• Stage 3a breast cancer, treatment options

    Asked by mytoby on Sunday, October 21, 2018

    Stage 3a breast cancer, treatment options

    Have any of you had invasive lobular carcinoma stage 3a, that is what I am by the pathology report, and am wondering what my options are and what is best, traditional medicine with possible chemo or alternative options like natural remedies such as detox, supplements, fruits and vegetables and herbs. Would love to hear from everyone about their experience, I know everyone is different but will help me look at my options and choices. thank you

    103 Answers from the Community

    103 answers
    • beachbum5817's Avatar
      beachbum5817

      I went with what my doctors suggested - surgery, chemo, and radiation in that order. I know that there are some on this site that have only used natural methods. Hopefully, they will see your question and tell you what they did. I did try all of the things that you mentioned, but I always checked with my oncologist to make sure I wasn't doing more harm than good. Good luck. Take care.

      29 days ago
    • dmarussell's Avatar
      dmarussell

      I am stage 2a, invasive lobular carcinoma. I have always been a very natural person...eating healthy, using herbs, exercise, meditation, and Still ended up with this breast cancer. Our breast cancer is caused by our hormones and there is No realmedical research that shows alternative remedies working. I went with surgery, chemo, soon to begin radiation and Tamoxifin. I chose to go with the science and medicine that has proven results for decades. Btw... chemotherapy actually came from a yew tree in the pacific region in the 1950s, if I recall correctly. Taking the bark was killing the trees so scientist came up with similar chemicals that are now used.

      29 days ago
    • Jouska's Avatar
      Jouska

      When I was diagnosed with breast cancer IDC (E+/P-, HER2+) stage 2a, I went with surgery, chemo, targeted therapy and Arimidex. The targeted therapy of Herceptin has been a life saver for those of us who are HER2+. I am very grateful for the medical research that made these good options for me. Was chemo fun, no, not at all. And I have long term effects such as neuropathy, from the chemo. But I am here, living my life as I want. I had a friend who was diagnosed less than two years ago with Triple Negative breast cancer. She chose a "natural" approach of detox, supplements, herbs etc, refused chemo which is always indicated with TN and she died in March. She left behind a beautiful 6 year old daughter and a loving husband. They are recovering and moving on with life slowly but surely. There are many things that can take us from this world. But breast cancer doesn't have to be one of them. Early diagnosis, proper medical treatment and our prognosis can be very good. Talk to your oncologist, make sure he/she and you are on the same page. My oncologist was also a doctor of osteopathy and very supportive of things like massage, acupuncture, exercise and other things that helped with the effects of chemo. I think post chemo a more plant based diet can be helpful, but during chemo, you need all the protein and calories you can get. I think you can do both, a medical-based approach that is the standard of care for your particular cancer and a wholistic approach towards overall wellness. Wishing you the very best.

      29 days ago
    • lynn1950's Avatar
      lynn1950

      I was diagnosed at stage IIIa. I threw the book at cancer: bilateral mastectomy followed by 8 weeks of adriamycin/cytoxin, then 8 weeks of taxotere. Then 6 weeks of radiation. Ten years later, I am taking my last dose of Arimidex this month. I questioned EVERY treatment, every step of the way. The first 12 months were the most difficult.

      Be brave and take advantage of every kind of support to boost your physical, mental, and emotional well-being. Although It isn't fun and sometimes you will cry, you will discover a lot of good things about yourself and others as you travel this path.

      29 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Nothing wrong with natural remedies--iF they are "integrative" or "complementary" (supplementing state-of-the-art/standard-of-care conventional therapies without conflicting with the latter) rather than "alternative." Those who claimed they "beat" cancer by going fully-alternative either were misdiagnosed, had exceptionally strong immune systems ("freak-of-nature," not the kind of strength attainable by lifestyle changes) or were among the very few who had inexplicable spontaneous remissions. The latter are unpredictable and not necessarily the result of prayer or faith (which are coincidental, not causational).

      Have a good heart-to-heart with your entire cancer team: surgeon(s), medical oncologist, radiation oncologist, and primary care doc. Explain what in your life is most important to you--both now and on your bucket list.

      And a slight correction about the origins of chemotherapy. While it is true that Taxol (paclitaxel) was first isolated from Pacific Yew trees and then the entire class of taxanes (which also includes Taxotere, aka docetaxel) were eventually synthesizable, chemo goes back way further than that. The original chemo drug was a derivative of the mustard gas used as a chemical weapon by Germany in WWI; later, vincristine (first used for blood cancers such as childhood leukemia) was derived from the periwinkle plant that also gives us the supplements vincamine and vinpocetine. The cytotoxic property of Adriamycin ("the Red Devil") was discovered when it failed as a naturally-derived antibiotic because it killed more than just bacteria. Platinum-based chemos (carboplatin, cisplatin) were derived from the mineral/metal platinum.

      So "natural bio-remedies" are a double-edged sword. Aspirin, first derived from willow bark, can be a miracle painkilling and anti-thrombosis drug--but also cause bleeding and gastrointestinal damage. Digitalis--which is a powerful heart medicine--comes from the deadly nightshade plant foxglove. So-called "vitamin B-17" (no such thing), aka "laetrile?" Derived from the same apricot pits (and the pits of close cousins bitter almonds) that also give us cyanide. Castor beans, ricin, toxins made by botulinus (in its weakened form, Botox) and anthrax bacteria range from permanently disabling to deadly.

      29 days ago
    • mytoby's Avatar
      mytoby

      Thank you. So are you saying that some "natural bio-remedies" are not so good to take? They can be harmful too? So many sites on the internet claim to heal people with cancer by detoxing, supplements, natural herbs, and a bunch of supplements that I have never heard of, but they seem more natural and less harmful to the body than chemo. I want to build my body up not take something that weakens it. If you take chemo to kill the cancer cells and it kills the good cells, than how can it be helpful? I don't understand if it makes you sick and weaker, your resistance is lowered and your immune system becomes weaker. Are you saying bitter almonds and B-17, laetrile, and those listed above are bad and don't do? I am just scared and still having some pain from the surgery, when does the pain go away? and when does the swelling and the numbness go away? I have some edema the surgeon said, a small part of what is left is swollen on both sides and it looks so bad. Right now, I am wishing I had not done this, think I was pressured and rushed into having surgery. If cancer was found in the sentinel node but not in any of the other 12 lymph nodes they took, then shouldn't that be good enough to not do anything more? I just want to take a pill and nothing more, I am scared to undergo any treatments, and another thing is how much does this cost? don't know if I can afford it, my husband has heart problems and we have had additional medical costs because of his procedures. This is overwhelming and I feel nervous, want God to take care of it if I keep praying and asking him for healing and protection that he will get me through this, just doesn't seem right, feel like I am being punished for not doing enough for God, and he is allowing this to happen to me. What causes cancer? how can we prevent it? is it genetic or environmental or stress related? I have had a lot of stress in my life, and my husband smoked for 50 years, but I always kept my distance and stayed away when he was smoking and he didn't smoke in the house or car, I know they say second hand smoke is very bad, but I tried to avoid that as much as possible. he quit 2 years ago, which is good, but now he is going to have a defibrillator put in, and his heard muscle is very weak. Please help or suggestions welcome, and prayers for God to guide us and help us get through this, thank you all.

      29 days ago
    • Jouska's Avatar
      Jouska

      Mytoby, your nervousness, fear and concerns are normal. Please, please, talk to your medical team about your concerns with chemo, money, etc. And talk to your minister about your religious concerns. No one asks for cancer, it happens. Whether it is genetic, environment or a combination of factors has not been determined. Pray to your God for strength to guide you through treatment and to help you heal. But to answer your other questions, natural/bio supplements found on the internet are not legitimate treatments. If they were, your doctors would be doing them too. The point that ChicagoSandy was attempting to make, I believe, is that many chemos and other medicines have their roots in plants and other substances. But they have been refined, tested, and proven effective. Maybe someday there will be a pill we can take to cure cancer, but not today. Today there is an arsenal of surgery, chemo, targeted therapies and radiation. Your oncologist wants to do the least harm to you while doing the most harm to your cancer cells. Typically for cancer that is found in the lymph system beyond the breast, surgery is not sufficient treatment, additional treatment is needed. It does take a while to recover from surgery. I had never had surgery until my double mastectomy and I had no idea how swollen and painful it would be. But with time, that all went away.

      29 days ago
    • mytoby's Avatar
      mytoby

      Thank you Jouska, how long was it before you started to feel better. It has been about 16 or 17 days since my surgery, and some of the numbness is waring off and now I have pain in my chest, maybe that is from the healing inside, it is tight, and at times sharp, like someone is stabbing me, and my side hurts still from where they had the 2 drains. I got them out Thursday, and my side is very sore. I did 1 side, can't imagine doing them both, I was considering it, but for now I only did the 1 mastectomy, maybe down the road I will do the other one, not sure at this point, if I have to or choose to, 1 day at a time. I just feel so unsure, am I going to make it or am I going to die soon? When reading the things on the internet, they sound so convincing, and questions they tell you to ask your oncologist, for instance, would you do chemo or give it to your family? and most oncologists would say no. To me, that tells you right there that they are thinking of the money and not what is best for our health. Maybe I am wrong, but am getting a negative option of oncologists. I meet with the oncologist on Thursday, and I am sure if he says do chemo I won't have to decide right away and can think about what my options are. I keep thinking if it was not in the lymph nodes then I don't have to do anything more, but the surgeon mentioned chemo, I am so scared of doing that. Anyway thank you for writing to me, appreciate your thoughts and help.
      How long ago did you do your surgery? and how are you doing now? did you start treatment right away or wait until you felt better?

      29 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Here's the difference--eventually the normal healthy cells damaged by chemo will regenerate; hair grows back, sores heal, immune system re-strengthens but hopefully the tumor cells will stay dead. But laetrile, B-17, magic mushrooms, detoxes, etc. will do nothing for you. At best they will be ineffective and deplete your bank account. At worst, some of them will interfere with the proven tried & true conventional treatments; and if you choose them instead of conventional treatments, they will allow the cancer to spread further and even rob you of later on of any chance you had to effectively treat your cancer.

      Not only was I pointing out that many conventional medicines started out as and were developed from "natural" substances, but also that just because something is "natural" instead of "chemical" doesn't make it safe. Look: it's a mistake to call alternatives like herbs, "detoxes" (a scam if ever there was one), "cleanses," fruits & vegetables, supplements and herbs "remedies." Something is a "remedy" only if it is proven to work. Nothing wrong with getting as much fresh or frozen produce into your diet as possible, especially if it leaves you no room for refined and processed junk foods.

      Watch out for those herbs & supplements, though. Not all herbs are harmless (well, maybe if you EAT and fresh ones like parsley, basil, mint, thyme, rosemary, etc. or cook with culinary herbs)--those like kratom & kava kava can be contaminated or poisonous; others like vinpocetine & ginkgo biloba can increase bleeding, especially if you must be on aspirin therapy; valerian, St. John's Wort, Devil's Claw, Black Cohosh and lavender are estrogenic--not a great idea if your cancer is estrogen-receptor positive.

      Supplements are a minefield--even worthwhile vitamins & minerals are totally unregulated as to safety & purity, much less effectiveness; the Fed. gov't considers them "foods," not the quasi-drugs they are. (Why? Because their mfrs. are major campaign donors to a certain political party currently in control of our gov't). Some will clash with your conventional medicines. And others, like antioxidant supplements, must be avoided during chemo & radiation--yes, they protect cells against damage, but cell damage is the whole point of chemo & radiation: you WANT to damage & destroy cancer cells. But just like chemo can't kill only the cancer cells and leave healthy rapidly-dividing cells alone, antioxidants can't protect only the non-cancerous cells! (It's okay to eat reasonable amounts of antioxidant foods--like those fruits & berries, and seasoning with turmeric).

      A word about "detoxes:" bull$#*t! Your body gets rid of "toxins" via perspiration & excretion (solid & liquid). Not everything that could harm the body is a "toxin," and certainly enemas, cleanses, chelation (except under strict medical supervision, and only for heavy metals) will not "detox you." If you are addicted to alcohol or recreational drugs, yes, "detoxing" is necessary. But that has utterly nothing to do with cancer!

      Why are you being recommended chemo even though only your sentinel node was positive? ILC is a sneaky cancer that tends to spread laterally like "leaves" or "sheets." And "Stage IIIa" ("stage" is expressed in Roman numerals, not Arabic numbers) says it all: tumors that size are on the verge of affecting the function of nearby organs and even metastasizing if you don't unload the arsenal upon them. Metastasis happens not just via the lymph system but also the bloodstream. Chemo will give you a much better chance of stopping that in its tracks as a Stage III instead of it becoming metastatic aka Stage IV (technically, "Stage IV" is a designation reserved for those cancers that have already metastasized when first diagnosed, but everyone these days uses the terms interchangeably).

      What caused your breast cancer? Nobody knows. Your husband's smoking didn't. What you ate or drank didn't. What you wore and used on your armpits didn't. (Ignore those wacko theories about bras & antiperspirant). Not praying hard enough or "properly" didn't. It is NOT, NOT, NOT punishment from God!!! If it was ER+, maybe it was because you started menstruating early and went into menopause late---but those are things beyond our control. Maybe it was heredity, but 85% of us here had no family history. You did nothing wrong. Until science can discover the answer, we have to go with "$#it happens." It happens to 1 in 8 of us no matter how we live our lives or treat others.

      29 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      One more thought. A cancer diagnosis is probably the scariest thing that will ever happen to us (except of course being told down the road that there's nothing more to be done). Our instincts often tell us that because our bodies are under attack (by our own cells), we want to prevent any further harm or pain, however temporary it may be--and too many people think that the way to do that is to avoid any remedies that may be painful, immunosuppressive, appearance-altering, etc. and instead seek help from Mother Nature. But Mother Nature is part of science--as are climate and disease.

      We all want hope. But some think that hope can come only from prayer and natural substances.

      hiThere's an old joke:

      A huge catastrophic storm approaches a town. The mayor, governor, and weather reporters all urge folks to evacuate pronto. But one guy thinks, "No worries--God will provide." The storm comes, and soon the street on which he lives starts flooding, up to his doorstep, and he can no longer get away using his car. Along comes a good Samaritan with a heavy-duty SUV, and offers to take him to high and dry ground. "Thanks, but no thanks--I trust in the Lord to provide." The waters reach halfway up the first floor, and along comes a first responder with a boat. "Climb in," the responder says, "I'll take you to safety." The homeowner says, "I appreciate that, but I know God will save me." The waters rise higher--he climbs first up to his attic and then, reluctantly, on to his roof. Soon, he hears a loud whir, looks up and sees a rescue helicopter, with a basket slowly being lowered. He waves it away, saying "I survived this long, and I know God will provide." Eventually, his house is engulfed and the floodwaters are moving so fast that he can't stay afloat and is swept away to his death.

      He finds himself at the Pearly Gates, and complains to St. Peter, "I don't know why I'm here. I was a man of faith all my life, taught that the Lord always provides. He abandoned me." Suddenly, from up above comes a deep, booming voice: "Who do you think sent you the people with the bulletins, SUV, boat and helicopter?!"

      Think of chemo, radiation, surgery, targeted therapy, immunotherapy and all that modern medicine has to offer as bulletins, SUVs, boats, and rescue helicopters.

      29 days ago
    • Jouska's Avatar
      Jouska

      I had my surgery in June 2014 and started chemo in July - about 4-5 weeks later. My surgeon would have preferred we wait, but my oncologist felt we needed to get moving. I was pretty much healed at that point. I hated the drains - nasty things!!! I had a double mastectomy and reconstruction all at one time. Go big or go home!!! I think I slept in a recliner for most of those 4-5 weeks after surgery. I told my doctors that I wanted to be very aggressive in my treatment, so we were. I had 6 rounds of chemo every three weeks and then continued the Herceptin for the HER2+ for a year after that. It took about 4-5 months to recover from chemo - about the same length of time the chemo took. I thought it would be faster, but that was wishful thinking. The recovery is incremental. You don't really see it coming but one day you are doing something that a month before you couldn't do. The Herceptin by itself was very mild and I had no side effects. I finished all treatment, except the Arimidex that I take daily almost 4 years ago and I am really back to normal - living my life, working, showing my dogs, enjoying my friends and family. I finished my chemo in November of 2014. Life does go on. It really does and for me it has totally been worth it. I would do it all over again.

      29 days ago
    • mytoby's Avatar
      mytoby

      Thank you ChicagoSandy for those words of wisdom. I see what you are saying, still thinking about why would I even have to think about chemo if my cancer is stage llla, only in the sentinel node but not in the other 12 lymph nodes that they took, that means it hasn't spread, right? I would think so, and the surgeon said she got it all. But maybe the oncologist will think differently as a precaution is what I am thinking. But I am still scared and afraid. My cancer is ER and PR positive, but not HER2, so from what I am learning that is a good thing. The tumor was 4.2 cm, I had a mamo in Dec 2017 and they did not find it, and when I went back in Aug. 2018, 8 months later, they found this tumor, think the surgeon said it was probably there in Dec. but they didn't see it, that's not very encouraging, is it? I just think they are practicing and make mistakes too, and we are the ginney pigs and they play with our bodies and hope they get it right. I'm sorry to think so negative, and I know it could be worse, they could have not found it when they did. I'm hurting and still sore, I have pain deep in my chest and it is warm to touch, I feel like I am on fire at times, I suppose that is part of the healing process, I don't know. Anyway, thank you for you comments, I do appreciate them and will consider what you are saying. thank you, goodnight for now.

      29 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      1. Based on your questions, you may not know that ANY cancer cells that are left anywhere in your body can grow and spread to other areas. There can be cancer cells that are too small to show on an X-ray that can grow and spread later, so we want to prevent that. If you do any alternative treatments, you should first ask your Oncologist if it's OK.

      2. You should depend on your Oncologist and staff to give you treatment advice, as they have many years of education about cancer research. There are people on the internet who will tell you anything to sell you things and take your money. If you are doubtful about what your Oncologist advises you, get another opinion from another Oncologist (or two).

      3. Make a list of your medical questions and take the list to your next doctor's appointment, along with a friend to help you remember your doctor's answers.

      4. With all your concerns, tell your doctors you are very anxious and ask if they can recommend a Counselor and/or a support group for cancer patients.

      5. You need to discuss your insurance with your doctor's office, preferably a social worker who can advise you about financial assistance if needed.

      6. The American Cancer Society has additional information on most things involving cancer, including financial help, so explore their website and info, and call them with your questions. They can also send you literature to read.

      Best wishes to you!

      28 days ago
    • gpgirl70's Avatar
      gpgirl70

      I was stage IIIc. I had a bilateral mastectomy. My entire chest, under my arm and down the side, part of my upper arm, and shoulder are still numb. However, I don't even notice it anymore. It did bother me at first especially when I would get tingling as nerves tried to regenerate. I also had stabbing pain at times and still do on occasion. I did not get reconstruction but did get a full chest tattoo which didn't hurt at all due to the numbness. Yeah! Now I get to see beautiful artwork when I look in the mirror.

      Anyway, I spent much more money on alternative medicine than I ever did on conventional medicine because by the time I was done with surgery, I was max out of pocket and never got a bill for chemo or radiation. After conventional treatment, I went to a naturopath but was disappointed because they really don't have a grip on hormone receptor positive breast cancer. Alternative medicine providers often prescribe supplements which are not good for those of us with ER/PR+ cancers. I wish I had cleared everything with my oncologist and did my research before buying because I ended up throwing away hundreds of dollars of supplements. Some my oncologist knew about and advised strongly against them and some I researched myself and found that they were estrogenic. That said, food is very strong medicine. I read a book called the Anti-cancer Diet and follow it fairly closely. I do take some vitamins and supplements that have been okayed by my oncologist.

      I was very scared at first and thought there would never be a day when I would be at peace. I am three years out from diagnosis and now have times when I don't think about cancer. I have made sure that I live life to the fullest and have plans in the works to look forward to at all times. Sometimes it is something little like dinner with a friend and sometimes it is a trip. I look ahead and find activities I want to experience and make plans. I even did that during chemo and radiation.

      28 days ago
    • ChiSandy's Avatar
      ChiSandy

      Why if you had only one cancerous node would you still need chemo? Because your tumor was 4.2 cm and that is big. It wasn’t even visible a year earlier, so that means it was aggressive. There is a “genomic” test called OncotypeDX that is done on tumor tissue samples of hormone+/HER2- breast cancers (“Luminal A”) with up to 3 positive nodes. You didn’t say what “grade” (1,2, or 3–from least to most aggressive) your tumor was. But that test is ordered only for those Luminal A tumors that fall into a gray area between obviously “no-chemo” (node-negative, Grade 1, Stage I) and definitely chemo (Stage II or larger, Grade 2 or 3, and node-positive). The size of your tumor puts it outside the gray area, and tumors that large are almost never less than a Grade 2 and likely 3. That it grew so large in only a year shows it is aggressive and even though Luminal A has enough rapidly-dividing cells that chemo would work and cause more good than harm. Especially the younger you are, the faster it grows. Size III is big enough to be on the verge of spreading via the bloodstream and possibly impacting nearby organs and structures even if it hadn’t spread.

      In your case, chemo is necessary. It’s no picnic, but it beats dying from a cancer that has irrevocably spread. Once that’s done, you will likely be on a daily pill like Tamoxifen or an aromatase inhibitor. You WILL get through it.

      28 days ago
    • mytoby's Avatar
      mytoby

      My thoughts exactly, why would I need chemo if cancer was only in the 1 node, the sentinel node, and not in the other 12 that they took? The surgeon said my cancer was a grade 2, so that means a medium grade is guess, she said it was 1 to 3 and mine was a 2. So not the slowest but not the fastest growing. Yes, does seem surprising that nothing showed up 8 months ago and then they find a 4.2 cm tumor. I was in shock and unbelief. I am still in pain after 2 and a half weeks, it is numb some, but still pulls and feels like someone is poking me in my side where the 2 drains were and my chest feels so hot and at times I get a sharp pain, when does this stop, or does it? I have gone through menopause naturally, not on hormones so why did I get this? I am ER/PR positive so I guess I will have to take a pill for about 5 years they said.

      Have any of you had a PET scan? after your surgery what type of other tests can they do to see if they got all the cancer? you mentioned a test Oncotype DX, guess I should ask the surgeon or oncologist about that? Also, someone mentioned to me a Mamoprint test, have any of you heard about that? I read the PET scan is done when they inject a sugar substance in you to see if there is any cancer, why would they do that if cancer thrives on sugar? Seems like if there were more cancer in your body it would make it spread more? I'm going to see the surgeon again tomorrow, my side is really hurting and I am thinking there may be an infection from where they took the drains out last Thursday, see what she says tomorrow. Thank you all for your comments, they are helpful.

      28 days ago
    • ChiSandy's Avatar
      ChiSandy

      Ask your oncologist what the “Nottingham score” was. Based on 3 tumor characteristics (differentiation, mitotic rate aka proliferation, and tubule formation), each of those characteristics is given 1,2,or 3 points—from most to least favorable. But tubule formation is upside down: the more tubules found, the better—and therefore the fewer the points. So the lowest possible Nottingham score is 3 and the highest is 9. Grade 1 is 3-4 points, Grade 2 is 5-7 points and Grade 3 is 8-9 points. Within Grade 2, though, the most important factor is mitotic rate. If the mitotic rate is 1, it’s likely the tumor is slower-growing and less-aggressive. Mine was a Grade 2: because I didn’t have enough tubular cells in the tumor that was worth 3 points; but the mitotic rate was only 1 point. My Nottingham score was 6, squarely within Grade 2. Yours, if you had a high mitotic rate, might have been 7–which is a high Grade 2.

      Because your tumor was so big and hadn’t shown up only 8 months earlier, that trumps the fact that you had only 1 positive sentinel node. Maybe even if you were node-negative, the size and how fast it grew would probably still have indicated chemo was necessary.

      28 days ago
    • ChiSandy's Avatar
      ChiSandy

      I also went through menopause naturally. But I got my first period at 10 and didn’t finish menopause till 55. I had very short cycles, so I got periods every 25-26 days, which means my body made more estrogen. (And those short cycles made it difficult to get pregnant). Had only 2 pregnancies, both after age 30 (the first was a “blighted ovum” miscarriage) and could breastfeed my son for only 6 weeks before I had to start taking meds that’d have gotten into my milk. So I was basically teeming with estrogen for decades.

      28 days ago
    • Jouska's Avatar
      Jouska

      MyToby, I know you want answers but cancer is not black and white. However there is established a standard of care for almost, if not all, diagnosis. Because cancer was found in a lymph node that does mean it has spread. They can't see individual cells, but because that is a significant possibility, chemo is recommended. One sugar injection for a pet scan will not cause cancer to grow, nor it is proven that sugar will make cancer grow. You need to get off the internet and talk to your doctors.

      28 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Okay, here's more info (and correction of misinformation & misconceptions). First, your tumor was big enough that neither OncotypeDX nor Mammaprint genomic testing are appropriate. The former is done--as I said--on Luminal A tumors that fall into the "gray area" where doctors are unsure about whether chemo would be effective enough to outweigh the risks. Too small (less than 5mm) and "indolent" (very slow-growing), node-negative, Grade 1? Clearly no chemo needed and it wouldn't work anyway on those slowpoke tumor cells. But Grade 3 or high-Nottingham-score Grade 2 (7 points), larger than 2cm, and at least one positive lymph node? Get thee to the chemo suite (do not pass "GO," do not collect $200).

      Now, what if your tumor had been in that "gray area" but its OncotypeDX score came back "intermediate-risk," i.e, 18-25? Until this year's second phase of the TailoRx study came out (more about that in a little bit), that's when another genomic-assay test such as Mammaprint or Prosigna would be ordered to be performed on a tumor sample. Those two tests have no "intermediate risk" category, just "high" and "low." "Low-risk"=no chemo (unless you really, really want it);m "high-risk"=definitely chemo.

      But that "TailoRx" study examined data for 10 years of postmenopausal women whose tumors were OncotypeDX-tested and who took endocrine (anti-estrogen) therapy such as Tamoxifen or an AI. The first phase of the test, released in 2016, showed that scores of 0-10 were so low-risk that it was perfectly safe to skip chemo and just do the endocrine therapy. Second phase, released earlier this year, found that those with scores from 11-25--except for women younger than 50 with scores of 16 or higher--could also safely skip chemo. (Those younger women with scores of 16 or higher might derive "some benefit" from chemo). So OncotypeDX's "intermediate risk" category of 18-25 was--except for younger women--effectively eliminated. An OncotypeDX of 0-25 (and for women younger than 50, 0-15) is now "low-risk;" 26 and above is "high-risk."

      But again, your tumor is too big and aggressive to qualify for either OncotypeDX or Mammaprint/Prosigna. Go ahead and spend the $4000 if you want to--but insurance wouldn't cover it if your tumor wasn't in the "gray area."

      28 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Second, it's way too early to do a PET scan. They're done when there is suspicion of metastasis, abbr. "mets" (spread beyond lymph nodes to other organs)--either upon examination, after a blood test for tumor markers (some oncologists do those for all patients, some not until they suspect mets) shows elevated markers, or if the patient mentions symptoms that might indicate mets. They do produce a dose of radiation higher than X-rays or CT scans, and they are expensive.

      Third, "cancer" does not "thrive on sugar." ALL cells need glucose, and ALL food we eat other than fat or pure insoluble fiber is converted by the pancreas to glucose. The sugar in the PET scan dye is mixed with a purple dye for visual contrast (PET scans are color) and a radioisotope that will glow when exposed to radiation. Yes, cancer cells do absorb glucose more readily but they don't "thrive" on it any more than do any other body cells.

      The reason refined sugars & starches are bad for cancer patients (except in moderation) is that they cause inflammation. For that reason alone, they're not great for anyone, cancer or not.

      28 days ago
    • mytoby's Avatar
      mytoby

      The pathology report said overall it was a grade 2, score 7, Nottingham score 7/9, tubule formation 3, nuclear grade 3, mitotic rate 1, estrogen receptor positive, progesterone receptor positive, specify score result: 8, pgR scoring system: Allred, HER2 negative, Average intensity of staining: strong, sentinel node positive, but 12 other lymph nodes were negative, no cancer. They took 2 biopsies and they both read the same, invasive lobular carcinoma. I had an MRI and the cancer was only in the right breast, there was no evidence of cancer in the left breast. the MRI said there was a 1.6 x 4.6 x 1.9 cm bass with type III suspicious washout kinetics, multiple small foci of enhancement was noted elsewhere throughout the right breast and may relate to background enhancement, although more extensive disease cannot be excluded given the large size of the mass. BI-Rads category V., don't know if this is helpful or not, Maybe since it was not in the other lymph nodes I will be able to avoid chemo.
      I have had pain the last few days, had the drains removed on Thursday, and my side still hurts very much. I am going back to the doctor tomorrow morning, don't know if something is wrong or not, hope it is not infected, still very sore and hurts to touch, also have swelling still, and it feels somewhat hard under the skin, looks awful with it caving in some and then sticking out under my arm with the swelling and the excess fat that she left and did not cut out. I think it looks awful, don't know what kind of surgeon she is, thinking maybe she could have done a better job, but who knows what to expect when you go through something like this.

      thank you all for your comments, appreciate it, and am learning a lot, it is so much to take in and try to educate myself. thanks again.

      28 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Because it was so big, appeared so quickly, was node-positive (yes, even one sentinel) and was a Nottingham of 7/9 (nuclear grade 3--poorly-differentiated--takes precedence over a mitotic score of 1 if tubule formation was also a 3; before the Nottingham score was devised, grades were assigned by degree of differentiation: well-differentiated was grade 1, moderately was grade 2, and poorly-differentiated grade 3--you will almost certainly be recommended to get chemo.

      BIRADS V means "highly suspicious for malignancy" and almost certainly cancer. Biopsies are done for BIRADS IV ("suspicious") on up. (BIRADS VI means the mass on the image has already been diagnosed as cancer).

      Your post-op symptoms, need for drains (rare for lumpectomies) and the "awful" appearance are all due to the size of the tumor and the size of the total amount of tissue removed in order to get clean margins. You will probably also be advised to have radiation (when getting both, chemo comes first). Normally, you would have been given the option to avoid radiation by getting a mastectomy--but given the size of the mass and the positive lymph node you would probably need radiation even if you had mastectomy. I can tell you that radiation isn't as traumatic as you think it is, and you undergo it for a relatively short time.

      You have a right to get your lumpectomy breast reconstructed--by Federal law all insurers, including Medicare & Medicaid, are required to cover it. A lumpectomy's official medical name is "partial mastectomy."

      27 days ago
    • mytoby's Avatar
      mytoby

      Thank you. The surgeon said I could do a lumpectomy, but she was recommending a mastectomy, and with that, radiation would have to be done. See what the oncologist says when I see him in a couple of days. I am learning so much and wanting to understand what is happening to me and to my body. I just want it over, scared to do chemo and loose my hair, will they tell me about doing chemo and when and then I would go and get a wig to be prepared ahead of time?

      So much to take in and so overwhelming it seems so unreal and like a bad dream, but when I look at my chest I know it is not a dream, and when I feel the pain and the numbness I know it is not a dream. Cancer is so awful. Thanks for all your input, you know a lot Chicago Sandy.

      27 days ago
    • Jouska's Avatar
      Jouska

      mytoby, we have all been exactly where you are today. It is so scary and typically most of us don't know much about breast cancer when diagnosed and we have to go up a steep learning curve and make major decisions very quickly about our health and our future. It is totally overwhelming and at times doesn't seem real. Hang in there and breathe. This too shall pass.

      27 days ago
    • mytoby's Avatar
      mytoby

      Thank you for your input, so much helpful information. This is sure a learning experience, I am learning something new every day. Wish I didn't have to go through this at all. For some of you how long did you feel bad or have pain after the surgery. I suppose it is less painful to have a lumpectomy than a mastectomy. I am cut from the middle of my chest to under part of my arm, and it is still numb but some of the feeling is better than it was, but then I am having chest pain and a burning sensation, and a tightness. I suppose a lot of this is normal. God bless you all for what you have been through and what you are able to share.

      27 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      mytoby, everyone's post-op pain experience is different--and it doesn't always depend on whether it was a lumpectomy, mastectomy or bilateral mastectomy. From what you described, you had a pretty extensive lumpectomy--closer to a "quadrantectomy."

      By way of comparison, even though my tumor was 1.3cm (about the size of a jellybean or fingernail), they took out a golf-ball-sized chunk to make sure they got clear margins the first time around. But my breast was pretty big to begin with. They took four lymph nodes (2 sentinel and 2 non-sentinel which were stuck to them and "came along for the ride"). None of them were cancerous, but I still developed a painful "seroma" (i.e., fluid that fills in the cavity where stuff was removed during surgery) in my armpit which grew to the size of a tangerine or small orange before it "popped" along the incision line--it had to be sutured closed.

      And I also developed a large seroma in my tumor cavity (the empty space left where they'd taken out that chunk) that swelled considerably before receding--the body eventually "resorbs" (re-absorbs) the fluid. My axillary (armpit) seroma is gone, and the one in my tumor cavity is now smaller than the empty space it had filled (and then some). The one in my tumor cavity caused the outside of that breast to bulge and made it temporarily the bigger of the two (and required I buy. bigger bras). It felt kind of tender inside for a few months after radiation--but it wasn't a burn; rather it was the pressure of fluid against fat, muscle, blood vessels, etc,

      How long did I hurt? The pain from the lumpectomy was gone long before the pain from the sentinel node biopsy--but again I had less tissue removed relative to what you had. 3 years later I still get occasional "zaps" and soreness where nerves that had been cut are reconnecting. It all depends on how much they took out and where they took it from (therefore, how much and where you were cut), and it sounds like yours has been quite an ordeal. Ask your surgeon about ways to deal with it.

      May I suggest you read (either borrow, buy, or download) one or both of these books: "Dr. Susan Love's Breast Book" (the breast cancer bible, updated almost annually, written by the pioneer of late-20th-century breast cancer surgery); and Dr. Elisa Port's "The New Generation Breast Cancer Book." (She's the surgeon who operated on Food Network's--and First Lady of NY State--Sandra Lee). A great site for reference--and support & knowledge from those of us worldwide who've had many different kinds of breast cancers & treatments--is Breastcancer.org, founded & headed by Dr. Marisa Weiss, a surgical oncologist.

      And never, ever be afraid to ask questions from those on your care team. Ask if your hospital, breast center or cancer center can assign you a "nurse navigator" who will literally guide you through this confusing and stressful journey.

      27 days ago
    • SCB's Avatar
      SCB

      Hi mytoby,
      I was diagnosed at stage IIIC with invasive lobular carcinoma in the left breast in April 2014. I had a unilateral mastectomy, followed by 4 rounds of AC every other week, then 12 weekly doses of chemo, and then 6 weeks of radiation. I finished my treatments in November 2014 and began Tamoxifen in December which I continue to take now.

      When I was given the diagnosis of Stage IIIC, I put my trust in my surgeon and oncologist and went with the standard treatment protocol. Had I received a stage 0-1, or maybe even early stage 2, I think I would have explored alternative treatments more thoroughly, and I believe my doctor's would have encouraged the same. However, when dealing with an advanced stage diagnosis, I felt I didn't have time to spend researching alternative treatments -- I just wanted the breast off and the treatments to begin so I could stop it spreading any further.

      I will admit that I have second-guessed my choice to go all in with the chemo & radiation, especially after completing treatment and just wanting to feel "normal". It takes longer than you anticipate for your body to recover and when you're still feeling lousy and your hair isn't growing back as fast as you'd like, you will question if it was worth it. Then, on other days when you're feeling stronger and getting back to things you set aside for awhile, you will feel you did make the right decision.

      It will be 4 years next month that I completed my treatments, and today I feel that I did make the right decision. My advice to you would be to research diet and nutrition that are helpful before, during & after chemo. Some hospitals offer nutrition counseling or classes for cancer patients that you should take advantage of. And, stay positive, try to keep your sense of humor on difficult days, and make sure you're comfortable with your doctors.

      26 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      SCB is spot-on. Check with your hospital (or the Web) to find out if there is a "cancer wellness center" or the equivalent in your area--they give not only nutrition advice but often services such as acupuncture & massage and classes such as yoga, tai chi/qi gong, and guided meditation to help you cope and get back to feeling better.

      Remember: when it comes to your health (especially cancer)...there's no such thing as a "stupid question."

      26 days ago
    • Kp2018's Avatar
      Kp2018

      There has been so much wonderful input to this question that I hesitate to offer mine, but here goes:

      You express many fears relative to your treatment options, and that resonates with all of us. That leads me to ask, though, do you fear your cancer?

      The fact that I have cancer and that I know that cancer kills is the root of my greatest fear – that this disease is going to take my life before my natural time (whatever that is) is up.

      I absolutely fear my cancer and especially the fact that it is a type that has a nasty habit of metastatic recurrence.

      Within this context, I have embraced every treatment that has been offered to me – surgery, 20 weeks of chemotherapy, and now radiation therapy. I don't love these treatments, but I appreciate every single one of them because they are designed to eradicate every single cell of cancer in my body.

      My surgery was just lumpectomy, with a re-excision a week later. I was pretty sore, and hated to miss yoga classes on the days the surgeries were scheduled.

      Did the surgery kill me? No, but the cancer it removed could.

      I was very apprehensive about chemotherapy because of the side effects. Much of my apprehension was alleviated by the “chemo teach” session which is offered to every patient before the onset of chemo therapy. This one on one session taught me how to handle each possible side effect. It taught me that I was not at the mercy of the chemo, instead, I could manage the side effects so as to make the experience less unpleasant. Also, the oncology nurses who administer the infusions had a wealth of information and suggestions. I learned to never let a side effect to get a toe hold. As soon as there was a problem that either I didn't know how to manage, or my management was not sufficiently effective, I let my nurses know, and they instantly offered solutions.

      As a result, I never got sick during chemo. I did get mouth soreness, and mentioned it to my nurses, and they immediately offered both a prescription medicine and a special mouthwash. That took care of that problem.

      Lesson learned: there are compassionate medical professionals who are dedicated to making chemotherapy as tolerable as possible for their patients, and they do a great job.

      Did the chemotherapy kill me? No, but the cancer could.

      Of course, I lost my hair.

      There is a catalog called TLC that is offered by the American Cancer Society. It has a wonderful variety of hats, scarves and very reasonably priced wigs. I ordered hair matching samples, and once a great match was made, I ordered at least 5 wigs until I found one that is perfect for me. TLC was wonderful about allowing wigs to be returned without penalty. I do have a problem, though. I have gotten so many compliments about how nice my hair looks (with the wig on), I don't think I'll be able to go back to my real hair (which never looked half as nice).

      I was apprehensive about the logistics of chemotherapy, like how much time it would take. It was not a problem. The first type of chemotherapy was administered every two weeks. Each infusion session took about a half day. That's all. The second type of chemotherapy was administered weekly, and took only about 3 hours per session. That's it. Your life goes on as usual. I NEVER had to miss a cardio or yoga class during chemo.

      Radiation therapy is almost over. It has been a bit more time consuming – daily for 20 sessions. It's inconvenient because it takes about 3 hours to drive to the treatment center, and the radiation session takes just 3 minutes.

      Is the inconvenience killing me? No, but the cancer could.

      When this whole thing arrived in my life, I had to rummage through my lingerie drawer to find my big girl panties. Putting them on and putting my fears into perspective helped immensely. I hope you can find yours.

      I'm still afraid, but only of the cancer.

      26 days ago
    • mytoby's Avatar
      mytoby

      Thank you SCB and Chicago Sandy. Good things to know, I will look up those people.
      I had a mastectomy and they took the sentinel node, it was cancer, and then took 12 more nodes, they were not. I am still very sore and still have a lot of swelling under my arm and on the side and top. it hurts a lot. hope it will get better soon.

      26 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      Hey, Mytoby,
      Kp2018 said it perfectly. Cancer is to be feared, and the treatments your doctor recommends are your best chance of killing the cancer. Best wishes.

      26 days ago
    • mytoby's Avatar
      mytoby

      kp2018, thank you for your honesty and words, Yes, I am afraid of cancer, and thinking what if all this is for nothing, and it comes back, and I have suffered in pain, loss of hair, financial loss, I can't imagine how much it costs to do all of this. We are facing a lot of bills because my husband has heart problems, he has been wearing a life vest for over 3 months now, and he is scheduled to have a defibrillator put in, in 3 weeks, unless they can get him in sooner. We have scheduled to buy another house, have it built in several months away, won't be ready until March or April, that was before all this started, we are retired, and our home, which we bought 3 years ago, at the time, I thought it was a good decision, now we are not sure, and we want to go smaller and in a 55 plus community where they do the lawn care, because my husband can't do that now, we pay someone to mow our lawn now, and I am wondering if we should cancel, will we both be alive by March or April, or will we both be better by January, and it will all work out? I am not sure, I see the oncologist tomorrow, may know more about my future after I see him. Thank you all so much, it really helps to hear what you have to say. I am fearful, trying to stay positive, but scared. Who would think as a senior, after menopause I would have to face this? I have been pretty healthy all my life, and now this? It definitely changes things and makes you think about how much time you have left and what do you want to do with your life and what is important? It changes your thinking, doesn't it?

      26 days ago
    • Kp2018's Avatar
      Kp2018

      Mytoby, you truly do have a lot on your plate so it's little wonder that you are feeling so overwhelmed. It's a terrible time when you're facing not only your own medical needs but your husband's also - with all of the time and financial repercussions associated with both. But, because this is cancer, it may be time for you to mentally put on your own oxygen mask first as the saying regarding aircraft emergencies goes.

      As I tried to point out, receiving treatment does not consume all of your time. There is plenty of time for your husband's medical needs to be addressed while you are receiving treatment.

      And, yes, the financial considerations are very real. As BarbarainBham has already suggested, discuss your concerns with your doctor's office or the medical center where you may receive treatment. There is plenty of financial assistance available for cancer patients who need it. Don't be afraid to ask!

      Also echoing BarbarainBham, ask your doctor about counseling and support groups. Cancer is stressful, and there is support for patients who need help in prioritizing what to be stressed about and in managing the stress. You'll do better in treatment with your stress under control.

      I am heartened by the fact that you state that you have been healthy throughout your life. Your good condition will help you immensely during treatment.

      You are so right about how cancer changes your thinking. And, I'm one of the old broads (I say that with pride) who develop cancer well after menopause. We all thought that retirement would bring our "golden years." I guess we all have to think again.

      I wish you well for your appointment today. Remember the World War II slogan: We Can Do It! And, you can!

      25 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      mytoby
      Kp2018 said: "because this is cancer, it may be time for you to mentally put on your own oxygen mask first as the saying regarding aircraft emergencies goes."

      Treating your cancer as your doctor recommends should be your highest priority, no matter what your living situation or financial situation may be. There's plenty of financial help for cancer, so you need to discuss it with your doctor's office and/or hospital, and apply for assistance. If you haven't already, do the same for your husband's health problems.

      I hope you got your questions answered at your appointment today and will make some phone calls tomorrow, as our posts above describe. Remember as we get older, we have to accept that parts of our bodies wear out, and it's difficult to plan too far ahead. Put your health and your husband's health above all else, and focus on that.

      As we recommended above, talk about this with a counselor if you are still anxious. Best wishes.

      25 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Yup--there comes a time in our lives (for everyone) when we must realize we can no longer fix one thing without breaking another, nor fix that too without breaking something else. We're not modular machines which can have parts replaced & repaired and be good as new--and not even most machines can do that.

      We have to prioritize. We can't help the ones we love if we don't help ourselves first (that oxygen mask metaphor is so spot-on). And health has to be the priority over all other matters, even if it means postponing or forfeiting something material we've desired for a long time. Do the math and see which is more feasible while you are spending the ABSOLUTELY NECESSARY money to care for yours & your husband's health: the extra money spent on remaining in your current home and having to hire more and more services to maintain it, or the cost of living in an environment where your needs are met and you can concentrate on making the most of your lives.

      It's not a matter of medical vs. housing expenses--medical is a non-negotiable priority. It's a matter of being honest with yourselves as too what you must reluctantly give up, where you must cut back (or spend a bit more upfront) in order to free up as much $$$ as you need for medical care. (And that also includes looking for various forms of assistance--public, corporate, private, charitable, faith-based, whatever--to fill in the gaps).

      25 days ago
    • mytoby's Avatar
      mytoby

      Thank you all for you comments. Saw the oncologist today and he gave me some hopeful news, he said what the surgeon put on the paperwork, stage 111a, was not correct, it is a 11b, and he showed me on a site called NCCN, National Comprehensive Cancer Network, that showed many doctors and they have revised the categories as of Oct. 8, 2018, he said was the latest. So having a11b is better than a 111a, from what he said. He also said they could take some of the tissue sampling that they took from me and have it tested, guess they test the genes, an expression test, and he said he uses Prosigna. And it would look at what the likelihood of cancer recurring and whether chemo would benefit me or not. I am anxious to hear about that, and am glad that he didn't say right away to do the chemo. I have an appointment to go back to him the end of November. I didn't ask him if he wanted to see the incision and he didn't seem like he wanted to, was wondering if he might, to see whether it looked like it was healing ok. I told him I was still having pain, and he said that was normal, it hasn't been a month, and it may take many months to feel better and maybe up to 6 months for pain to still be there. Have any of you heard about these genetic tests? I have heard about the Oncotype DX and the Mammaprint, but not the Prosigna one? if so, what do you think about them and what they tell you?

      I am still nervous and scared as to what our future holds. We both have medical issues, my husband is 72 and I am 69, who would think we would be dealing with this? we have been healthy all our lives, just minor things and now our "golden years" are not golden. Like I said previously, we are planning on moving in the spring, we are suppose to meet with the salesman on Wednesday and go over preconstruction paperwork I guess, and give him some money. We had applied and been approved for a home equity loan to come up with the additional money they needed for the down payment. I just feel unsure since our health has changed, and not even knowing if we can get out of it or not, or if we ought to, I think about mentioning to him when we see him that we have been having health problems and see what he says, and ask him if one of us dies are we still obligated to get the house? But part of me hates to say anything, and since we signed a contract to do this a few months ago, I am not sure what the liability is and if we are locked in, wondering but afraid to bring it up. My husband is very difficult to deal with and he gets mad at me and raises his voice and yells at me, we have had a lot of issues over the years, I know he loves me but doesn't have a very good way of showing it. He does a lot around the house but has a negative and bad attitude, and is critical of a lot of the things I do. So life has been hard over the years. When I get down and sad, I would ask God to take me and get me out of this sad world, and now that this has happened I sometimes think he is leading me in that direction, but I know I should stay hopeful and positive and not to give up. Things happen for a reason, right? so that's what they say, and I am trying to see what I can learn from this. To be more appreciative and thankful for what I do have, and to count my blessings every day I wake up. God loves us but why does he allow us to suffer through things like this? I am sorry to ramble on ladies, just get carried away, and think if I write it out it will help get some of my frustrations and feelings out. Thank you all so much for your words and for your support. God bless you all, and have a good evening.

      25 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      I can't give online legal advice (I'm retired, probably in a different state, and we don't have a written retainer agreement). Like someone on Quora identifies herself in her sig line, "I'm a lawyer but I'm not YOUR lawyer." So this is not legal advice.

      You are not obligated to follow through on getting a loan, and in most states all you'd be out if you don't complete the process is the earnest money you'd already put down, if any, at this stage of the transaction. If I were you I would stay put in your current digs till the acute phase of treatment is done, and not touch your home equity for anything other than a serious emergency. That as-yet-unbuilt house isn't going anywhere anytime soon. Also, in most states you cannot be compelled to buy something--"specific performance" is only for performing an action (doing something), or paying for something you already received or for services which someone has rendered on your behalf. But PLEASE consult a lawyer in your locality.

      Such a relief to hear you are a Stage IIB and not a IIIA--HUGE difference. Though both are still considered "early stage," IIB is much earlier and more easily treatable. Highly likely you'll be around for a good long while, plenty of time for the sparks to keep flying between you two (see last paragraph).

      Prosigna is the same kind of a test as Mammaprint--back when OncotypeDX still had an "intermediate risk" score category of 18-25 and a tumor scored "intermediate" with OncotypeDX, Prosigna was one of those two tests performed on the surgical pathology sample because it has only "high" or "low" risk categories. I suspect Prosigna will be used more often now--especially for ER+/HER2-tumors ineligible for OncotypeDX but still undecided about whether to prescribe chemo.

      Good idea to take that Prosigna test (actually, it isn't done on you but on a sample of the surgical path tumor already removed) and wait for the results. Usually 10-14 days, during which you will have more time to heal from your surgery.

      I can't give marriage advice either. Long-married senior couples often develop irritating habits that rub each other the wrong way, but still love each other deeply. (One of my favorite songs, Paul Simon's "Darling Lorraine," charts the course of such a marriage--from starry-eyed courtship to married crankiness to devotion in the end).

      25 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Oh, and consult an insurance broker or check out various Medicare insurance companies before Dec. 7 to get a Medicare Part B supplement or Advantage plan if you don't have one (or if you do, one with better benefits, wider network &/or lower premiums). That'll go a long way towards defraying your medical expenses.

      Since my husband & I went on Medicare and bought our Part B & D supplements, he's had four hospitalizations & two surgeries, and I've had three surgeries and a raft of medical appointments, tests & services. All we've had to pay for are medications--and the ones I take for breast cancer? Letrozole is $5-9/mo. and the Prolia shots I take twice a year to keep it from giving me osteoporosis cost me nothing out of pocket. Zero. Zip. Zilch. Nada (okay, four bucks to park at the cancer center).

      25 days ago
    • Kp2018's Avatar
      Kp2018

      mytoby, I am so glad for your good news. You must be feeling very relieved about the possibility that chemo may not be necessary. I sincerely hope the results of the testing point in that direction.

      I hope that you will take the advice that ChicagoSandy has so generously and ethically offered. If you do, two major stressors can be set aside to allow you to focus on your own and your husband's health. My very best to you.

      24 days ago
    • Ginalola's Avatar
      Ginalola

      ChicagoSandy. How are you doing with the Prolia injections? Are the side effects listed troublesome?

      24 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Ginalola, no side effects at all (yet). After a Zometa infusion, I spiked a fever, had bone aches and felt flu-ey for several days. So that's why I switched to Prolia. First three shots my arm was sore for a day or so; fourth shot, the nurse injected it very slowly--felt like a flu shot going in and my arm never swelled up.

      I'm not having any oral symptoms, but the goal is to prevent osteonecrosis of the jaw. I get dental cleanings regularly. My dental team is being very careful to avoid extracting teeth or implants--I had two root canals (not caused by Prolia) and composite-acrylic fillings in order to save the teeth and lower the risk of ONJ. (Not showing signs of it). I'm going to need orthodontia to keep one front incisor from protruding any further (originally caused by a fall I took in childhood) and loosening. Orthodontist will probably proceed very slowly & gently.

      24 days ago
    • Ginalola's Avatar
      Ginalola

      ChicagoSandy. I may have missed some of the conversations. What were you diagnosed with? How long ago? Did you have reconstruction? If so. What kind? I am overwhelmed w decisions and getting back to work.

      24 days ago
    • mytoby's Avatar
      mytoby

      Thanks for the updates and comments, tell me more about the Prolia shot? My oncologist has mentioned that also. I have heard bad things about it, and some of the side affects and am scared to get it. Also, what about the pill you have to take for 5 years, he told me about that? he said the side affects are like going thru menopause, which I have already done, so I guess hot flashes, thinning hair, muscle and bone aches, is that about it? doesn't sound like much fun.

      I guess I will wait to hear from the oncologist about the Prosigna results and go from there. yes it was a relief to hear it was a state 11b not a 111a, that gives me hope.

      Let me ask you, what after surgery and then are most doctors doing any additional tests to see if the cancer has spread? I guess I will wait until the Prosigna results come back and go from there.

      I am surprised that he did not start me on the pill that he said I would be taking. Guess it is one thing at a time. This is definitely a learning experience.

      How long does the pain last? I am still hurting a lot at night time. I put ice on the incision or I have a bag of frozen peas, that helps a lot in the evening before I go to bed.

      I have a few pain pills left and am trying to take Tylenol instead of the pain pill. But most of the time Tylenol doesn't seem to help. I am tired of the aching and the pain.

      I may try to contact a lawyer for a free consultation just to see what they have to say. If we go through with the purchase of the house next year or not, they have broken ground and are beginning to lay the forms, went by today to see.

      Praying all goes well and both of us get healthier. Any more thoughts and suggestions from everyone, thank you all.

      24 days ago
    • mytoby's Avatar
      mytoby

      Also, how can they test to see if the cancer is anywhere else? is that by a PET scan?
      How about a CT scan? I am just tired of the aching and pulling, it feels like someone jabbed me in the side and chest, very painful in the evenings.

      How long is it before you feel like wearing a bra? these camisoles are great, most of the time they are comfortable, but as the day goes on they tend to annoy me and rub on my incision.

      Thanks everyone for all you comments.

      24 days ago
    • Jouska's Avatar
      Jouska

      I think either a MRI or a PETScan can be used to see if cancer has spread. When first diagnosed I had a MRI to see if any of my lymph nodes "lit" up. There was one suspicious one. They removed 5 during surgery and all were negative. Surgery is very invasive and your body responds to the invasion by hurting, swelling, oozing etc. I lived in zip front hoodies and no bra for several months and slept in a recliner. Unfortunately pain and swelling are part of the healing process. I used Ibuprofen and Robaxin (a muscle relaxant) for my pain management. You have to stay ahead of the pain. I took 4 IB every four hours, even waking myself up during the night to take the IB. I think I took the Robaxin twice a day. It worked. Drugs like Norco make me very ill so I won't take them. If your incision is not infected, it is probably just going to take some time to stop hurting.

      24 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      OK, this'll probably take three posts. First, Ginalola, I was diagnosed (after my 21st annual routine mammogram 8/17/15) with invasive ductal carcinoma (IDC) 9/8/15. Lumpectomy & sentinel node biopsy (SNB) 9/23/15. Stage IA: 1.3cm, Grade 2, ER+/PR+/HER2- ("Luminal-A-type" IDC, the most common postmenopausal kind & the slowest-growing). Tested negative for all known genetic mutations. OncotypeDX 16, so no chemo. Had 16 sessions of radiation targeted to the tumor bed. Started Letrozole 12/31/15.

      24 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      I did not have MRI--my breasts are fatty, not dense. Just routine mammo, then "spot compression" (close-up) mammo followed by ultrasound. And not only did I not need reconstruction, I might even get a bilateral reduction to "even them out" and take stress off my upper back & shoulders. (My cup size is one I didn't even know existed until 10 yrs ago when I got properly fitted).

      I haven't had bad side effects from Letrozole. In fact, probably fewer aches & pains than most women our age. Weight gain due to slow metabolism (and food cravings--as well as the "life is too short to deprive myself" mentality) was probably the worst side effect. I had a ridiculously easy menopause--no idea what a hot flash feels like. I sweat a bit when I first get under the covers, but the ceiling fan takes care of that. (I do have to clip my hair up at night or in the gym because the sweat makes it dry haphazardly wavy & frizzy).

      I had my first bone density (DEXA) scan the day I started radiation, 11/2/15--before starting Letrozole. It showed I had osteopenia. 2 years later, 11/15/17, my osteopenia has actually gotten milder. I can't take oral bone meds because I have acid reflux (GERD). So they started me out on a Zometa infusion because at the time Medicare Part B & D wouldn't cover Prolia (denosumab) because it was too new & expensive. I had awful side effects from Zometa, as described above (and with my small veins it took 5 attempts to find one). Then almost 6 months later, Medicare revised its guidelines to approve Prolia for postmenopausal women with osteopenia or osteoporosis who are on aromatase inhibitors (i.e., "AI"s, e.g., Letrozole). Have had 4 out of 6 twice-yearly Prolia shots and am doing fine.

      The potential side effects are not that common or serious--you do have to be careful to avoid infections for the first week or so after the shot, but you need to do that anyway. And in the doses given for bone health on those taking an AI, the risk of osteonecrosis of the jaw is 0.1% (1 in 1000). You can lower that risk by good home tooth & gum care, regular dental cleanings, and not getting extractions or implants. The bigger risk is for those taking the Xgeva form of denosumab for bone mets--stronger dose, more frequent.

      23 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Be patient about post-op pain. Everyone heals at a different pace, especially when you consider the extent of the surgery. Talk to your surgeon or nurse about how not to let the pain get too bad--you need to stay ahead of it because it's much easier to maintain a tolerable level than it is to bring it down from agonizing to merely awful. (I learned this after my knee replacement surgeries). Keep up with the icing--but never more than 20 min. on. 20-30 min. off. You might want to ask about how to integrate tor alternate the pain pills & Tylenol. If the pain is from cut nerves you might want to ask for something other than an opioid. (And I find that CBD oil at bedtime really helps with pain tolerance--haven't touched an opioid since a week after my arm/wrist surgery).

      When to wear a bra again? Well, you had a mastectomy, I had lumpectomy--so my answer might not work for you. I was in fact ordered to wear some sort of bra 24/7 for the first 6 months to help the seroma swelling go down. A front-close "leisure bra" for sleep and for the first couple months post-op a soft cup (no-underwire) bra. But I found partway into my radiation that the underwires in my bra didn't touch either the incisions or the radiated tissue, so I have been wearing my normal underwires during the daytime ever since.

      They do make nice mastectomy bras with pockets for forms or prostheses ("foobs"). And believe it or not, U.S. law requires your insurance (including Medicare) to cover one prosthesis per removed breast and two bras a year! (Even for those of us with lumpectomies, which are considered "partial mastectomies"). Ask your surgeon for a prescription.

      23 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      OK, I lied. Post #4:

      My MO explained that our cancer center doesn't do followup scans--either MRIs, ultrasounds, CT or PET--on a routine basis after initial adjuvant treatment (chemo, radiation) for early-stage breast cancers in women who don't have dense breasts, especially if regular followup exams and mammos show no recurrence. The only time they do PET scans or tumor marker blood tests is when they suspect there might have been spread--based on a physical exam or you telling them about any symptoms that might suggest it. Then they'll do them routinely thereafter if metastases have been diagnosed--to check on the progress of the mets as well as the efficacy of the treatment. But let's not get ahead of ourselves. PET scans are expensive and do expose you to ionizing radiation stronger than an X-ray or mammo. "Save the rays" for radiation treatments & mammos (and the dentist once a year).

      Wear what's most comfortable. You might want to try a soft piece of cloth (flannel, fleece) between your incisions and your camisole or bra to minimize friction. Sleep in the least painful position you can find.

      One more thing about side effects--don't watch drug commercials on TV. The disclaimers always mention side effects so gruesome that you'd rather stick with the disease instead. Not everyone gets side effects and for those who do, they may be quite tolerable. And nobody gets them ALL.

      23 days ago
    • mytoby's Avatar
      mytoby

      Thank you so much for all the information, it helps. The oncologist says I will need to get the prolia shot, since I will be taking the ER/PR pill to help prevent cancer from coming back, and that weakens your bones, as I have osteopenia and osterporous already. What about dental work, I forgot to ask him if I could go to the dentist, I've been looking for one for awhile and hate to go and spend the money, but I know we need to go soon. My husband needs to go too, but with his upcoming surgery in a couple of weeks, think we will wait a bit.

      I put a bag of frozen peas, the ones they gave me after the biopsy, I wrap it and put it on my incision in the evenings, that helps, for about 20-30 minutes, helps ease the pain, as it gets worse as the day goes on and the evenings it hurts quite a bit, guess it is using the arm throughout the day and it catches up to me. I know the dr. said to keep moving and stretching it as much as possible, which I have been doing. So much new and to learn, it definitely changes your life.

      One day at a time, thank you all for your information, will see how it goes on Tuesday, I go back to the surgeon. I hope she tells me something positive besides it looks good and it is healing. I am alittle disappointed in her, thinking I would go to a woman dr. that she would be more caring and compassionate, but not getting a lot of that feeling from her, she is ok, don't get me wrong, but I guess I was expecting more, more answers and more information than she has provided. I have found out so much from all of you, much more than she has ever told me. Thank you again all of you. Have a wonderful Saturday and Sunday!

      23 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Yes--you can go to the dentist--but do it first before you get your shot. It's okay to get fillings, cleanings, crowns, even root canals while on Prolia; but if you have to get any teeth pulled and/or implants, you should complete the work and allow them to heal one to two months before your Prolia shot. (Ask the dentist--that's what mine told me). You might want to increase the frequency of your routine dental cleaning visits from twice to three or even four times a year, to keep your gums in good shape and monitor for any signs of bone loss.

      Even though dentists are expensive (and not covered by Medicare), your teeth are the gateway to the rest of your health--even heart health. You MUST take care of them! If you are near a university dental school, they have clinics that charge an income-related sliding scale. Each appointment takes longer than with a private dentist, but the students are supervised literally every step of the way by the professors who must approve before the next step, and the quality of the work is excellent. I still have two crowns that were installed at the Univ. of Wash. dental school clinic when I was an impoverished law student...45 years ago!!!

      Easy does it with the stretching--you should feel it stretch but not be painful. Increase your range of motion very gradually. And always ice (10-20 min.) after each session. Try "wall-walking" your fingers "itsy-bitsy-spider"-style up the wall, but back off and head back down when you feel true pain.

      The reason your surgeon isn't being more forthcoming with you is that she, too, is waiting for more information from the pathologists, etc. She is probably also overloaded with patients and can give them only a limited amount of time. She has seen dozens if not hundreds of patients, but sometimes doctors--even the most caring ones--can forget that for each cancer patient, ours is the only case in the world. And while caring and compassion are desirable, doctors can burn out if they get too emotionally involved. The best surgeon in the world is useless if she becomes a basket case. (Speaking as a doctor's wife, I can tell you that doctors care much more deeply about their patients than they let on).

      23 days ago
    • mytoby's Avatar
      mytoby

      Thanks for all the info. Are you an attorney? you said you were a law student 45 years ago. and you are a doctor's wife? that is awesome. How educated you are. You have so much knowledge. I will check on the dental soon, as I have not been in a couple of years and know I need to go soon, but have been putting it off because of #1, I hate going to the dentist, and #2 the cost involved when we have already spend quite a bit of out of pocket cost for our portion of our medical tests and in and out of the hospital stays. I have not idea about the prolia shot and also about the prosigna test that the oncologist is talking about running on the cells that were in the tumor that they took, I should have asked him when I was there last week, maybe I will call on Monday and check on that. I keep thinking of things after the fact even though I went in with things written down to ask. I do like the oncologist and he seems very kind and caring. I just think about so many new things, trying to stay upbeat and positive, God will get me through this, right?
      Thanks Chicago Sandy, by the way are you in Chicago? if so, is it cold there? I live in Florida, not wanting to go back to cold weather again, grew up in Maryland and that got pretty cold in the winter. Thank you for all your knowledge and information, it really helps.

      23 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Not only God, but knowledge and advocating for yourself will get you through this. I am a retired attorney and semi-retired performing songwriter (locally, I no longer tour). Yes, I'm in Chicago. It's chilly here, but not outright cold...yet. We might have one "Indian Summer" (is that a culturally-insensitive term yet?) left before winter sinks its teeth in. They're calling for a slightly warmer & drier winter here due to El Niño--but that doesn't mean we still won't get much snow or that it'll never dip down near or below zero. I grew up in Brooklyn and my mom (z"l) spent her final decade & a half in Florida. I found it tolerable in winter, but brutal in summer...almost as hot & sticky as Chicago summers. But at least we never have to worry about hurricanes, and tornadoes are rare here in the city, especially near the lakefront.

      You're very welcome, mytoby--best of luck going forward and do keep us posted.

      22 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      mytoby, ChicagoSandy is giving you great advice, and I want to urge you to talk to an attorney before your Wednesday appointment because of the money you mentioned giving the real estate person. As ChicagoSandy mentioned, in my state you would lose any money given to the real estate person if you decide not to buy the house, so it's very important not to jeopardize your money, even more so if its from an equity loan. If they have started building the house, it will be easier to get out of your contract now than later, before the builder has sunk so much money into the house. He won't be happy if he builds it before you tell him.

      Remember, ChicagoSandy also said:
      "It's not a matter of medical vs. housing expenses--medical is a non-negotiable priority. It's a matter of being honest with yourselves as too what you must reluctantly give up, where you must cut back (or spend a bit more upfront) in order to free up as much $$$ as you need for medical care. (And that also includes looking for various forms of assistance--public, corporate, private, charitable, faith-based, whatever--to fill in the gaps)."

      Don't forget to use the Medicare Open Season (ends Dec 7th) to consider better insurance supplements that cover like ChicagoSandy's, so you won't have to worry about costs for cancer. If you need help, call your State Insurance Commissioner, or ask your doctor's office if they or the hospital have a Social Worker to help you choose.

      Since you said again that you didn't expect to get cancer at this age, I would ask why not. Your body is getting older and naturally will wear out as a part of life, so plan for it financially.

      22 days ago
    • mytoby's Avatar
      mytoby

      Hi Chicago Sandy, question for you: We have made a contract with a builder, signed papers and gave them a $10K deposit, and now I am wondering if we should go through with this because of our health issues. Do you know if we are bound to keep the contract and follow through, or would we get our deposit back or loose it? Just doing know what to do and feeling nervous, don't know what to do, it won't be finished until March or April, but they have broken ground. Any suggestions on what to do and who to contact? I am afraid to consult with the salesperson. We are suppose to meet with him on Wednesday to go over pre-construction and meet with him. help please.

      22 days ago
    • mytoby's Avatar
      mytoby

      Don't know how our health issues will be in 5 or 6 months. The community is a 55 plus community, On Top of the World community but don't know their attorneys or how their legal process works, and if because of our medical problems we could be allowed to withdrawal.
      Any suggestions or help please. I'm nervous and scared to move but feel we need to get a smaller house and downsize.

      22 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      mytoby, I'm not an attorney, but until ChicagoSandy replies, I can direct you to your contract you signed when you gave them the $10,000. It should say if it's refundable or not if you change your mind. ChicagoSandy pointed out that laws can vary by state. Even if it's not refundable, if you tell them sooner rather than later before they sink money into building, it's possible they might give you the money back for good PR.

      No one can require you to stay in a contract, but it's possible they won't refund the money, so don't give them any more money.

      22 days ago
    • mytoby's Avatar
      mytoby

      Maybe I could check with some legal service, or maybe I should pray that God will see us through this and I am worrying for nothing, and by March or April we will both feel better. I keep thinking what if one of us dies before the house is completed? how can I do this if I am left alone? but I don't want to stay where I am, the house is too big but I am afraid to move, all the work to do and stuff to get rid of, at the time we signed the paperwork a couple of months ago and gave them a deposit I was not diagnosed with breast cancer, even though I believe they got it all, as of right now, and my husband's heart problems were just beginning, but we felt he would be getting better, it has been 3 1/2 months and now he is scheduled to get a defibrillator in a couple of weeks, we both may be better in the spring, maybe this is just a bump in the road, so to speak, I just don't know, it is easier to stay put and make the best of what it is and what we have, rather than go through things and have all the stress of moving, which is very stressful, praying for God's wisdom and guidance, and direction for what to do about this situation, thoughts and suggestions, what any of you would do if you were in my situation. Part of me wants to move to a house in a community where they take care of the lawn care and have less to worry about and there are activities and lots of things to do, which I think would be good for us. I am more sociable than my husband and thinking it would be good for me to not feel depressed, to stay active. My husband doesn't care too much about things to do, activities, he likes to watch TV a lot, and I get bored, and like to go out with people, hoping and praying God will direct me to make the right decision. I may have no choice, and it may be too late to cancel, like I said, I am afraid to ask anyone, they do not know we have had health issues. Funning how your lives can change quickly. thanks to all of you for listening and sharing.

      22 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Consult a lawyer, now! Especially since you say you are unfamiliar with the retirement community's lawyer(s)--you do NOT want to go in there alone. Ask around your congregation if you belong to or attend one of whatever faith. Consult the faith-based charity of your own faith--they may be able to find you someone who would work on a contingency fee (% of what they save you).

      If you cut bait (i.e., cancel), there is a definite possibility you will lose that $10K but perhaps a lawyer could negotiate a lower price proportionate to the amount of work already performed--hard to believe that merely breaking ground can eat up $10K. Materials can be returned to the vendor or used on the contractor's next project. If you don't cancel, you could be obligating yourself to pay even more money and dig yourself into a hole deeper than the one to be dug for the foundation of the house. The fact that you don't feel you can afford both this and your medical treatment says it all--your health comes first. Especially since you say you aren't up to the task of staging the house, packing, selling and moving--that takes more and more effort the older we get.

      But the cold hard truth is that you must set priorities. You can't have it all--good medical and dental treatment and a brand-new house without groundskeeping responsibilities. Something's gotta give. As to lawn care, if you stay where you are you could inquire as to young people or handymen willing to do the basics at a low cost. You might be able to barter if there is a service you could render (driving, babysitting, etc.).

      21 days ago
    • BarbarainBham's Avatar
      BarbarainBham

      mytoby, remember things usually work out for the best and as they are meant to. After you do as ChicagoSandy recommends, prioritize your health, things will work out as they are meant to. After your cancer is behind you, you and your husband can decide where you want to live or if you want to stay where you are with some help. Best wishes.

      21 days ago
    • mytoby's Avatar
      mytoby

      Hi Chicago Sandy: thanks for the advice, I will maybe talk to the salesman or someone in charge, we are suppose to meet with them on Wed. at 1 pm, the salesman, to go over preconstruction, it is a large community, and they build spec homes and sell, and I am sure they would sell the house if we were not to take it, nothing lost out of their pocket, they build their own houses, so they would be building it anyway, nothing lost on their part. Just am scared and afraid to speak up, embarrassed I guess, I could tell them that we have health issues and what if one of us dies before the house is completed? we are in a 2330 sq. ft. house, the new one is 1980 sq. ft. my husband says we need to downsize more and get rid of stuff, so maybe if we went smaller, he would be happy. I am just stressed and I kept thinking if we get past the holidays and the new year we will be better and will be more able to handle the move. And the fact that it is a 55 plus community with lots of activities for things to do, would keep up happier and younger. I have always wanted to buy a golf cart and be able to go to a community center and a few stores close by and that community offers that. It is kind of lonely and depressing living in a community where there are a variety of ages and we have nothing in common with the neighbors, the ones next door are a little younger and are nice, but a lot of them have small kids and work, so we don't mingle with them. Our kids are older than they are. I am just sorry we moved here and was thinking it would be good for us to be more active, right? keep busy, live longer, stay healthier. well, maybe my husband will call and talk to someone about it at the community. I am not good at confrontation, I want peace and no conflict. You know the fight or flight, well I am the flight person. Anyway see what today brings. thanks for your support.

      21 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Talk to a lawyer first if you can, but when you do meet on Wed. explain the full situation--don't be vague about "health issues," but instead open up about both your cancer diagnosis & treatment and your husband's heart condition and need for a defibrillator. They're not monsters and may very well understand. With more Baby Boomers retiring every day, there's probably a demand for housing such as that. (BTW, even your future "downsized" home is bigger than mine, and mine's one of the bigger homes on my city block)!

      As to getting rid of stuff, why not start winnowing down stuff, or at least packing away things you haven't used for a while and don't need to use? And those younger neighbors might be happy to get some busy-work like mowing your lawn.

      Where in FL are you? My mom was in Kings Point in Delray Beach, a 55-&-over condo community where most of her lodge sisters from Brooklyn had moved. It was great until she hit 80 and started outliving her neighboring friendss. She didn't drive nor ride a bike/adult trike, and needed a car service & friends who lived a town or two over to take her places the shuttle bus couldn't. When she was on home hospice (cardiopulmonary disease, not cancer), she had a daytime caregiver, and we'd fly down every couple of months to spell the caregiver, keep her company and take her places.

      21 days ago
    • mytoby's Avatar
      mytoby

      Has anyone had a reaction to the Prolia shot? and any reaction or symptom to the pill that they say that you have to take for 5 to 10 years? side effects? I understand it is like being in menopause, hot flashes, sore and aching bones, joints, thinning hair, etc. things like that?

      21 days ago
    • mytoby's Avatar
      mytoby

      We live in Belleview, which is between Ocala and the Villages. Our home we are building is in Ocala, On top of the World community. It is a lovely community and I was hoping to make some new friends and feel like I had a community where I can relate to others and find some activities to do, to help us stay younger and be happier. Even though my husband doesn't care about social activities and things much, he's happy staying home, sleeping and watching TV. I like the feeling of friendship and companionship. I have made many friends at church, and that helps for now for where we are, but here I have to drive everywhere, and if we move, I want to sell 1 of our 2 cars, and get a golf cart so I can drive around the community and maybe go to the grocery store or some where else close by. I have always wanted a golf cart. The Villages have a lot of people and golf carts, too crowded and too expensive. This community is like a smaller version of t he Villages. I am looking forward to going there, but scared and nervous about the move, and need a dose of motivation to get rid of stuff! suggestions or thoughts?

      21 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      I had no reaction to the Prolia shot except some soreness at the injection site--and the fourth shot produced no reaction at all.

      The pill to which you refer is called an aromatase inhibitor (abbreviated "AI")--there are three different ones: letrozole (brand name Femara), anastrozole (brand name Arimidex), and exemestane (brand name Aromasin). I have been on letrozole for almost 3 years, and for me the side effects have been quite mild--my joints have gotten a bit sore (except my knees, which are prosthetic), I sweat at night when I first get under the covers (ceiling fan takes care of that), and my metabolism has slowed down, causing me to gain some weight but not a whole lot. No bone pain, and my hair is no thinner than it was before I started taking letrozole. Also, because of the Prolia and calcium/magnesium/D3/K2 supplements, my pre-existing osteopenia has actually improved. I have no idea what a hot flash feels like--I had a very easy menopause. (Maybe because my periods were horrendous).

      If you do get side effects, you can try switching to a different manufacturer's generic version. or one of the other two.

      21 days ago
    • Jouska's Avatar
      Jouska

      mytoby, golf carts are a lot of fun! Just as an FYI I have been on Arimidex for about 3.5 years and have had minimal reaction to it, other than a little stiffness which could also be due other reasons. I am also receiving Zometa infusions every six months for the same reasons Chicago Sandy is. I have tolerated those well and my bone density has improved. I also take calcium and Vit D daily.

      21 days ago
    • mytoby's Avatar
      mytoby

      Thank you all for your comments. I emailed the salesman about the house, and told him that we were not able to get the home, that we were having medical problems. We are suppose to go and meet with him tomorrow at 1, will wait to see if he responds and what lies ahead. Prayers please from everyone, I am nervous, don't know if we will loose our $10K deposit, my husband is very angry at me, yelling and saying "I told you so", and "I should have said no", but he agreed and signed the papers 2 months ago, but I always feel like I can't do anything right, I am always wrong and the bad guy, feeling so very down right now. On a lighter note, I went to the surgeon this morning and she said I was doing good, that's her opinion, but it still looks bad, the said and under my arm are still swollen. Waiting to hear from the oncologist in a couple of weeks about the prosigna test results. Thanks for all your support and prayers everyone.

      20 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Losing $10K deposit is a lot better than being on the hook for a lot more if you let the project continue and then cancel later.

      I had swelling under my armpit for about 3 or 4 months even after my seroma popped open at the incision line. Healing does take time. Surgeons have seen a lot more cases than we have--so if yours says you're doing well, believe her.

      20 days ago
    • mytoby's Avatar
      mytoby

      Yes, you are right. Hate to loose that, and afraid to confront them tomorrow, hate to hurt people and feel that I am disappointing them. Makes me feel like a failure, and that they wouldn't like me any more. Like I let them down, but know they can sell the house to someone else. Prayers for tomorrow please, it is at 1 pm. thanks for your support.

      20 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Prayers and good wishes sent for tomorrow. Remember you are neither hurting anyone nor letting them down. You did not ask to get breast cancer nor your husband to have a serious heart condition. You are not a failure--health and circumstance failed you. Happens to all of us.

      20 days ago
    • mytoby's Avatar
      mytoby

      Thank you. Appreciate your support. better get some sleep soon, almost 12 here. prayers for tomorrow. you are right, health and circumstances failed us. God will help us and get us through.

      20 days ago
    • lynn1950's Avatar
      lynn1950

      mytoby,
      We can't see the future, but we can imagine what we would like it to be and work toward it purposefully. In hindsight, I wish that I had been better at imagining my future when I first learned I had cancer.

      .A bc diagnosis is a blow to the solar plexus and I experienced a lot depression and anxiety in the first years following treatment. At times I was suicidal. It was a very dark and painful time. My husband was not always understanding and supportive (he is a good guy, but he is human).

      I am completing 10 years of Arimidex today! My last Prolia shot will be in January, providing my Dexascan in Dec. cooperates. I no longer have osteoporosis.

      The greatest strength I possessed going forward was a willingness to try everything and never give up. It is 10 years since my diagnosis - only scattered fragments of depression and anxiety remain. I enjoy my three new grandchildren, two new sons-in-law, a new, smaller place to live, writing, good friends, the beauty of each new day.

      One of the most important things I learned is how to breathe (through counseling and yoga classes). You have to practice how to de-stress by breathing, not just pull it out of your pocket when anxiety overtakes you.

      So take a cleansing breath. There will be good things in your future.

      19 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      There are even breathing apps (one is built into the Apple Watch) to guide you through taking centering & cleansing breaths. In through the nose, blow out through the lips--and as singers do, use your abs, not your chest muscles to power it.

      19 days ago
    • mytoby's Avatar
      mytoby

      Thank you. I will try some of the breathing techniques. Well we went to the community and I told the salesman that we were having medical problems, both of us, and that we don't know what the future holds, but we would not be able to get the house until we see how we do, and he was very nice, and said he was sorry, and that I should send him something in writing, which I did, and have not heard anything back from him. He said he would talk to the people "higher up" and see about our deposit. I felt bad, and started crying, I feel like I let them down, and part of me still wants to get the house, and today I am sad, and thinking I made a mistake, and wish I had not done that. I am just back and forth in my thinking, I want to move, but I think about all the work it takes, and don't know if we are up to it, but by March or April things can change, and we could both be a lot better. It is not the "ideal" house, or the one I really would want, I gave up some of what I wanted to get, because either they couldn't do it, or it was too much money, and we had a certain amount that we were trying to stay within price wise. I have put so much work in planning and picking out things for the house, I am sad today as I can't make up my mind on things and I am wishy-washy on it, one day I think it will be ok, and the other day I think I made a mistake. Any suggestions or encouragement is what I need, as I don't have a lot of self confidence. I'm praying I won't have to have any chemo, and if it is suggested, I don't know if I will do it or not. The fear of it overwhelms me. Saw the surgeon and she said I was doing good, even though I am still swollen and it still hurts and pulls. But the pain is getting less than it was a week or two ago. Thanks everyone for your support as I pour out my thoughts and feelings. A place to vent and share, thank you.

      18 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      You did not let anyone down. Print out your & your husband's (if it's ok with him--HIPAA, of course) diagnoses from your patient portals or have the oncologist & cardiologist write & sign a short note, then send copies to the salesman. Give the higher-ups a chance to process things and be patient--it can take a while to make a decision and then cut you a refund check.

      See how you feel by March or April. Be honest with yourselves at that time about whether you have the strength to begin staging, selling and packing up your house, and ask your doctors what they think both of your prognoses might be by then. Those spec houses aren't going anywhere. And you might be able to find an already-built one that better fits your needs and is up for sale by its current owners, even in that very community.

      If it's any consolation, my husband & I are a few years younger and healthier empty-nesters rattiing around in this big (for a city neighborhood) house--but when we think of what effort it would take to get it ready to sell and then weed out the stuff we don't need and pack up what we do, we both break out in hives. We still have unopened boxes from when we moved here from Seattle 40 years ago.

      17 days ago
    • mytoby's Avatar
      mytoby

      Thank you Chicago Sandy. That is encouraging and helps me deal with the present moment, not knowing what will happen to either one of us, hoping things get better but only God knows. Part of me wants that house and part of me doesn't. It is not the perfect house, we met with the design team and picked out our tile, backslash, flooring, etc. and it was fun and I was looking forward to that. I wanted a walk in shower, but the option for the master bath which I picked to make the closet larger, they would not do a walk in shower, so that is no big deal but it was disappointing. Possibly they would keep our deposit and use it toward the future purchase. Who knows, maybe by January we will both be better and we could still get the house if it isn't sold. It is suppose to be completed by March or April. I still want to move but like you said, the thought of getting rid of stuff is hard, and I have boxes and things in closets that I haven't worn or used since we moved here 3 years ago. I will try not to worry about it and maybe tell them I am still interested in moving there and hoping our health improves. Thanks for your thoughts and comments. It helps.

      17 days ago
    • mytoby's Avatar
      mytoby

      I have not heard back from the builder, but am still thinking it may work for us to move in the spring. I am hoping both of us will be better by the first of the new year. I would like to go up and sit and talk with them and see what our options are and if they can be patient and see how my husband's surgery goes on Nov. 13 he is scheduled to get a defibrillator and I am hoping I won't need any farther treatment, staying positive. I am beginning to feel better, my arm and chest still hurt, but not as bad as a week ago, thinking I am getting stronger and back to normal soon, so I will be able to think more about packing and sorting and getting rid of things. I just feel like our lives are so uncertain now, and pray for guidance and wisdom from God to open the right door and that his will be done in our lives, for peace about this. Hoping better days are ahead for both of us. I have not heard yet from the doctor about the results of the prosigna test. I'm hoping it will be positive and I will only have to take the pill for 5 years. Thinking positive thoughts. thank you everyone for listening and your support.

      17 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      By. spring, even if you get chemo, you will be done with chemo & radiation. And your husband likely will have gotten acclimated to the defibrillator.

      These genomic tests like OncotypeDX, Mammaprint, and Prosigna can take 10-14 days to get results. Doctors have to send the tumor sample to the company's lab, which "slices & dices" it to examine 17-24 genes, depending on which test. But it's done in the order they receive samples, so when they first get the sample it goes into the pipeline. Then, once the genes have been "assayed," the results need to be gathered and run through a computer algorithm to produce a recurrence-risk score. All this takes time. And then they have to get the results to the doctor who ordered it. If you have a patient portal, your doctor will message you with the results--but usually you have to meet with her to get the full report and various statistical graphs.

      As to the antihormonal pill (the AI), the conventional wisdom used to be 5 years; then 10; then, for some, even 15. But they have developed a test called Breast Cancer Index (BCI), which is usually run on a tumor sample as you're nearing the end of 5 years. They may also test for estrone levels and how well you metabolize the drug. .

      17 days ago
    • mytoby's Avatar
      mytoby

      Thank you Chicago Sandy, you are so smart. You have a wealth of knowledge. I imagine the Dr. will notify me when he gets the results from the Prosigna test back.
      Have you participated in any clinical trials? I was also thinking about that, and wanted to ask him when I talk to him again. I am anxious to hear about the results from this test. Don't know what pill I will be taking yet for 5 years I think he said. I can handle a pill, said it has menoposal symptoms, but that is ok, should not be too bad. thanks for the information.

      16 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      I did participate in a Mayo Clinic trial before my surgery, but it wasn't of a drug or a treatment. It was a study to determine whether "decision trees" had any impact on a patient's choice of surgery (mastectomy, bilateral mastectomy, or lumpectomy+radiation). I was asked my preference, then shown a series of visual aids (informational slides, handbooks, graphs, charts, videos) and asked after each one if they influenced me in any way--whether I learned anything new from them, changed my mind, or reinforced my preference. I learned something new (that overall survival is identical for bilateral mastectomy and lumpectomy+radiation; and while recurrence risk for lumpectomy+ radiation was twice that of bilateral mastectomy, those numbers were 4% and 2% respectively--and then those percentages were illustrated as red silhouettes among 100 black silhouettes). But in the end, that new information reinforced my preference.

      16 days ago
    • RoxyMom's Avatar
      RoxyMom

      I was diagnosed with ILC in July, had a r mastectomy and have just started radiation. I am also working with a naturopath to mimimize side effects, and help with long-term health and lower my risk of recurrence.

      I have personally struggled every step of the way with whether to go with traditional or natural treatments. I research every step, and have settled on using the best of both. I’m only 55, and want to say I’ve done everything I can. I have had a hard time accepting the seriousness of my diagnosis. Wanting the removing of the tumor to be the end. I’ve had to accept that I have to do more. I have fought having the radiation every step of the way, but I am doing it for my family. If was 15-20 years older I don’t think I would do it, but I can’t know that for sure.

      There are a few suggestions i can give. #1 - since it’s ILC it is most likely hormone receptive. Ask your surgeon to have the OcotypeDx test done on the tumor. This may indicate that you most likely would not need chemo. #2 - in working with my naturopath he was honest that I am probably being over treated, but that he still supports it. 70% chance the radiation is not needed, but the 30% chance in my case (small # of cells in the lymph nodes) makes it still worth it. #3 - If you want to add natural/complementary treatments, find someone who understands the traditional medicine. My naturopath worked several years at Cancer Treatment Centers of America alongside MDs.

      The most frustrating thing in all of this for me is that there is very little that is 100% sure. You’re fighting something that may or may not be there systemically. Research it, ask questions, and keep your head involved, not just your emotions.

      16 days ago
    • mytoby's Avatar
      mytoby

      Thank you both for your comments. Roxy Mom, what stage was your cancer? I had a right mastectomy in Oct. and am healing and still having some pain, numbness and soreness, but is slowly getting better. I am waiting for the results of a similar test called prosigna, the oncologist said it is like the Oconto DX type but he uses that one, and will see what it says when it comes back. He says I am a stage 2 B, the surgeon said a 3A, but I think the oncologist knows best. He said they came out with new information/guidelines I believe it was Oct. 8, and he showed me how they came up with that diagnosis. The scar and my chest looks awful, bumpy and concaves in some and then bulges out, so I am not happy with how it looks, but it is what it is, right? I have to live with it, and hopefully it will get better as time goes on, I am trying to eat healthier and less sugar and junk stuff, and I have lost a couple of pounds, but not enough, it is a start. Maybe some of my extra fat will go away with the swelling as it gets better. I will ask the oncologist about any clinical trials that may benefit me. Also, about diet and healthier eating. Looking into things on line too about making good choices. Got a book and some info by Chris Wark, who beat cancer. I think if we look at other avenues and try to make good choices in our food, and supplements we can stay strong and cancer free. I am believing that the report will come back good and that they got all the cancer, surgeon said it was not too deep and it did not go to my chest wall. I am trusting God and trying to stay positive. I will admit I am scared some days and I still cry, but hopefully the worst is over. We are trying to do the best we can with what we are dealt. Cancer is so bad and seems to be increasing. thanks for all your comments and information everyone.

      16 days ago
    • RoxyMom's Avatar
      RoxyMom

      MyToby, my surgeon rated the tumor 2b, but my oncologist also said the new ratings would make it lower. Give yourself time to heal, you're not that far from the surgery. I'm about 7 weeks out now, and everything looks much better than it did at 4 weeks.

      16 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      NO, NO, NO!!! Do NOT follow "Chris Beat Cancer!" He had a very, very different type of tumor in a different organ--and he is young enough that we cannot be sure whether his "natural cure" is truly effective yet. Some cancers, especially in young men, can have spontaneous remissions or disappear; others may not have been true cancers at all.

      16 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Alternative treatment (i.e., instead of conventional) is a total crock. Integrative natural treatments are okay so long as you do them along with conventional ones--unless they chemically or metabolically conflict with conventional treatments. If any of them do, drop that natural treatment.

      16 days ago
    • mytoby's Avatar
      mytoby

      Are some of you on the ER/PR hormone pill that helps fight cancer from coming back? since I am ER/PR positive, and HER2 negative, I understand there is a pill that you take to fight the hormone receptors from being attached by the cancer, if I understand that correctly. Oncologist says side affects are like menopause, hot flashes, thinning hair, muscle or joint aches, anyone experienced that? I know everyone is different and what might affect one person may not affect another. thanks for your input.

      16 days ago
    • mytoby's Avatar
      mytoby

      Still waiting to hear about the Prosigna test, I am hoping and praying it will come back positive and the change of recurrence will be very low. Has anyone had that particular test? or one similar? Anyone want to share their results, if they have had the tests and what followed after that. Would most of you believe the test to be accurate and follow it's recommendations?

      My incision is still hurting, but not as bad as a few weeks ago. I'm hoping in 4-5 months the pain will be gone and my numbness will be gone and I will be feeling much better, almost like before I had the surgery. Trying to stay positive and not think about it most of the time. Thank you al for your support and comments. Still not sure what the outcome will be on our house, waiting to hear back from our salesman. My husband's surgery to get a defibrillator is scheduled for next Wednesday, outpatient surgery center. Prayers that all will go well. He had an EKG and he is back in A fib, heart still weak, but hoping and praying it will improve with rest, medication and time, thank you all for your support and prayers.

      11 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Prayers that your husband's defib-implant surgery goes off w/o a hitch. You might want to take some of your deposit refund money (if you get one) and buy him either an AppleWatch 4 or a KardiaMobile (pocket-size) device--both have a limited EKG/quasi-Holter monitor function that can alert not just him to a suspected A-fib episode but sent a readout via app to any doctor he designates. I have the watch--the full EKG app. is scheduled to be ready next month but the built-in cardio app does alert the wearer to bradycardia, tachycardia and possible a-fib episodes so (s)he can decide to call a doctor or visit the ER.

      11 days ago
    • mytoby's Avatar
      mytoby

      Thank you ChicagoSandy, hope all goes well on Wednesday. His ejection fraction rate on the left ventricle is only 15-20%, which is low, and so far the medication has not helped much. He is back in A fib by what the EKG said he had on Wednesday of this week. The defibrillator won't help his heart much they said, but if he were to have a heart attack it would shock him. I will keep that in mind, he has a cell phone but doesn't use it, he isn't technically savvy or interested in much of that, but maybe the kardiaMoble device might be something to check into. I will try to mention it to the cardiologist when I see him. Prayers that early Wednesday morning all will go well. We have to be there at 6:30, surgery scheduled for 7:30.

      10 days ago
    • mytoby's Avatar
      mytoby

      Did is ask any of you if you have had the prosigna test done? and if so, what were the results? can you believe them and how accurate are they? I am still waiting to hear about mine from a couple weeks ago. Are any of you who have had breast surgery sore and hurting for weeks afterward? It is getting some better, but at night time it hurts and I put ice on the incision, my under arm is still quite a bit numb, and my arm between my elbow and my wrist hurts to touch, and some of my upper arm hurts, the part that I do have feeling in. Shouldn't it be better by now after 4 weeks? My surgeon did not explain any of this to me or what I would expect to feel. I am wishing that I had not gone through with it, and thought about other alternative treatments, supplements and more natural cures, to fight my immune system. It is too late now, it is done, and I am hoping the jabbing pain I get in my chest off and on goes away. Thank you for your support.

      10 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      4 weeks is way too soon for your breast to be completely healed. 3 years out, my armpit is still numb. About your forearm, ask your surgeon about "cording" or lymphedema and for a referral to a therapist (but not till you're done with radiation). Avoid those "alternative" cures because they may conflict with your standard treatment. Ask your oncologist what immune-boosting foods you can safely eat--WITH, not instead of foods. As a rule, until your oncologist gives you the green light, you should stick to only those supplements necessary for basic nutrition: a multivite, probiotic/fiber, D3, calcium, magnesium, K2 (and if on a statin, CoQ10). Antioxidant foods are ok, antioxidant supplements not. Your next step will be either radiation or chemo--and you WANT to promote tumor cell destruction. Antioxidants will keep those treatments from killing those cells! Your jabbing pain is probably from nerves being cut & reconnecting.

      9 days ago
    • lynn1950's Avatar
      lynn1950

      I just finished taking Arimidex, an AI, on Halloween - after ten years of taking the little white pill. My hair is thinner, my bones are thinner, I am NOT thinner, I ache all over, but I am alive!

      9 days ago
    • mytoby's Avatar
      mytoby

      Thanks Sandy, how about multi vit, coq10, probiotics, glucosomine for bones and joints? D3?
      I have been taking a lot of these for quite a long time, he has not said anything yet about what I am taking, I will ask again when I see him in a couple of weeks. Wow, your armpit is still numb?
      I guess it will take awhile, I am expecting it too happen too soon. Don't know yet about any treatment other than the pill for 5 years, and don't know when I will start on that. I go back the week after Thanksgiving. so antioxidants are not so good? here all along I thought they were suppose to help your immune system. I bought Activia to drink, is a probiotic, isn't that good? and I bought some probiotic pills to take. I thought I did eat right, even though I would eat some junk food, but when reading things about cancer, it looks like we get cancer by environmental, bad food choices, and stress, that's what I get out of it from some of these sites. I know stress is a big factor. That is a hard one when we have lots of stress in our lives. thanks for the info.

      9 days ago
    • ChiSandy's Avatar
      ChiSandy

      All the supplements you listed are fine—they won’t interfere with your adjuvant treatments doing their tumor-cell thing or interfere with your aromatase inhibitor. Probiotics are ok too. Eating antioxidant and anti-inflammatory foods (berries, green veggies, etc,) are fine—just don’t take herb pills or antioxidant supplements. You don’t get cancer from bad food choices—they just might cause inflammation and raise your risk (and even that is statistical). Stress also doesn’t cause cancer but managing stress helps you get through treatment. Certain things are beyond our control—we can’t avoid all the stuff that emotionally stresses us, or air pollution or fumes in the air. Certain things like parabens, phthalates, processed soy (tempeh, seitan, textured vegetable protein) chemical sunscreens (mineral is fine) an be endocrine disrupters, which can increase estrogen production—so read cosmetic and personal-care product labels carefully and try to avoid most soft plastic containers.

      9 days ago
    • mytoby's Avatar
      mytoby

      Are the plastic water bottles ok? I usually buy a case of bottled water at a time. Leave them in the garage, and then take 1 when I need to. I have been trying to get used to using the water out of the refrigerator, it is cold and filtered, which I think may be better than the bottled water. I don't use soy and don't use sunscreen. I try to add some almond milk with 1% milk to my cereal, and I use either fresh or frozen blue berries and maybe a third of a banana. Try to eat veggies at least once a day, I drink lots of water throughout the day. I don't know what you mean by parabens, phthalates, processed soy, tempeh, seitan, or textured vegetable protein, have not heard of them so I don't think I take them. I don't wear much makeup, I shower and wash my hair every day, put lotion on afterward, should I worry about what shower gel and lotion I use? I have not thought about that. Just hard to believe that estrogen would be a contributing factor when I have gone through menopause, think my body would produce less estrogen and it would not be ER/PR positive. It seems a bit confusing and hard to understand how that works. When reading those type of labels what should you look for and avoid? those things you mentioned above? What about diet programs or supplements to help loose weight? I know what they say, avoid carbs, rice, pasta, potatoes, starchy foods, high fat foods, etc. Would some of the food you eat make cancer grow or worse? I guess my oncologist must feel there is no hurry to proceed with anything while waiting for the test results to come back. I would have thought he might have put me on the 5 year pill to start. I hope it is not expensive, and that my insurance will cover must of the cost. I think of so many things that I have never thought about before. Guess this is what it is like once you have cancer, do you always worry and wonder if it will come back or if it is somewhere else and they just haven't found it yet? My mind thinks about things like that, like never before this has happened. I just hope my arm and chest will feel better, stop hurting, and the numbness goes away. I wonder when you wear a bra if it rubs against the incision and where the drains were. My side still hurts from the drains, if only I knew, they never told me all these things before surgery.
      It has to get better. I just hope the rest comes back positive, if not, I don't know what I am going to do. One day at a time. thanks Sandy for your info, helpful, this is a learning experience. in Reminds me what one of my principals told me, she said "This is a learning experience Pat", and she was right, same with this. Trying to learn all that I can to better deal with this and make an informed decision if I have to.

      9 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      I don't buy water in those soft plastic bottles, but I'm often given it at hotels, festivals, offices, etc. Better than throwing it out. It's really bad for the environment--much better to either: get a large 5-gal. jug delivered (with a dispenser) and fill your reusable BPA-free bottle from it; buy water in gallon jugs with the recycling symbol embossed on the bottom and fill your reusable BPA-free bottle from it; or fill your reusable BPA-free water bottle from your fridge's dispenser or water fountains when in public. If your tap water is safe, that's okay too. I find when I have one of those individual soft plastic bottles, I try to refill it as much as I can before putting it in the recycle bin.

      You SHOULD use sunscreen, just not chemical sunscreen, whenever you go out in daylight before 4pm (including driving). Look for mineral sunscreens (zinc oxide &/or titanium dioxide as the active ingredients) of at least SPF 30 (even your daytime moisturizer or foundation). If you go without sunscreen on your face, and on your exposed arms, you're flirting with skin cancer.

      Your dietary habits sound great. If you don't know what those soy products are, good--you're probably not eating them anyway (they're meat substitutes). Best to avoid refined sugars & simple starches--but not because of any theoretical (and I do mean "theoretical") effect on cancer. (Sugar does NOT cause cancer or "feed cancer cells"--ALL cells are fueled by glucose, a sugar that your digestive system makes out of everything you eat except fat). What's bad about sugar & simple starches (which turn to sugar when the enzymes in your saliva touches them) is twofold. First, they are bad for your metabolism--they end up promoting fat storage rather than burned by your muscles. Second, they tend to cause inflammation. Inflammation stresses your tissues, and has been shown to be the real culprit in heart attack and stroke (it can destabilize plaques in your arteries and make them break off and block the arteries--sometimes combining with blood clots). Third, they increase your blood sugar, which thickens the blood and makes it harder to pump and likelier to clot when it shouldn't.

      Phthalates are chemicals that function as "plasticizers," found in soft plastic reusable containers. (Most that are sold now, like Hefty, Gladware or Tupperware, don't have them any more). If you have older ones, don't microwave in them. BPA is a chemical that is also in some softer plastics to keep them pliable--nowadays, it's very easy to find BPA-free plasticware and reusable water bottles (polycarbonate, steel, glass, etc). Parabens (methylparaben & propylparaben) are preservatives found in many common moisturizers, lotions, shampoos, shower gels, conditioners, etc. Read labels--usually paraben-free products will proudly proclaim it on their front labels or packaging. (I carry a magnifier when I shop because the print is so tiny). Generally, stuff made in Europe will not have parabens or phtalates because the EU has banned them (they're way ahead of us in so many things).

      This is getting long--so the next answer will explain how we make estrogen even after menopause.

      9 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Part 2:
      It is true that after we complete menopause, our ovaries stop functioning and no longer make estrogen. But other parts of our body do, indirectly. Our fat cells (not the actual fat in them, but the nuclei and cell walls) and adrenal glands make an androgen (male-type hormone) called "androstenedione." Our livers make an enzyme called aromatase that helps convert that androgen into estrone, which is a form of estrogen. (Even though ER+/PR+ breast cancer is commoner in women our age, younger women can get it too--it's the most common form).That pill you'll be taking for 5 years? It's called an aromatase inhibitor, or "AI" for short (the three kinds of AIs are anastrozole, letrozole, and exemestane, and they're all pretty much interchangeable in efficacy--if you can't handle one, another might cause fewer or milder side effects). What an AI does is block the action of aromatase so it can't change the androgen to estrone, and therefore your ER+/PR+ tumor cells don't get the estrogen that would fuel them.

      Guided diet programs like Weight Watchers are practical & healthy, and those with prefab meals like Jenny Craig, NutriSystem, South Beach and Seattle Sutton are great if you hate to cook and don't eat out a lot. You can make your own healthy diet, but it's not easy for many people. Low-fat is questionable--especially since so many low-fat or fat-free foods are loaded with sugars & starches for texture. (The obesity epidemic skyrocketed beginning with the late-1970s "low-fat" fad). If you eat saturated fats, make sure they're from 100% grass-fed animals. You are what you eat, but you're also what you eat eats)! One type of fat you must avoid is trans fat (fat that started as oil but was hydrogenated to make it solid at room temperature). The best fats are omega-3s, from wild cold water fatty fish like salmon or halibut, egg yolks from pasture-raised chickens, and occasional small portions of grass-fed beef, pork or lamb. Olives & olive oil are good, as is virgin coconut oil. Seed oils (grapeseed, canola, safflower, sunflower, cottonseed) are high in omega-6s, which cause inflammation.

      But steer clear of weight-loss supplements. Those that claim to raise metabolism can be stimulants that are harmful to your heart and even cause stroke; the herbal kind are either worthless, estrogenic, or keep your AI pill from working. One exception is GTF (glucose tolerance factor) chromium (not chromium picolinate), which does help you better metabolize carbs without raising blood sugar--especially if you have pre-diabetes or type 2 diabetes. It's a mineral, though, not an herb. The biggest problem with supplements is that they are unregulated--so you can't be sure if they're safe, have the same dose as on the label, or aren't adulterated with other substances.

      Can't tell you about what the bra will feel like after drains, because I didn't have drains. As for the cost of the AI? I pay $9/mo for generic letrozole, whether it's the beginning of the year or after I've fallen into the PartD "donut hole." When I "climb back out," usually in Dec., I pay $5! And the one experience we all have with cancer? We have to get used to "waiting for the other shoe to drop." The trick is to not let it make you crazy--life goes on no matter what, the annoyances & stresses, but also the joys. Treat your cancer, but don't let it divert your attention from life.

      8 days ago
    • RoxyMom's Avatar
      RoxyMom

      MyToby, the pain in your arm is lymphatic cording. Mine started 2 weeks post surgery. Talk to your surgeon, and have them refer you to a lymphedema clinic right away. I started my lymphedema treatment at 3 weeks post-surgery, and they're following me through radiation so that it doesn't get worse. They will teach you exercises a massage techniques to do at home, and they'll help with that while you're with them. I'm only 2 weeks into radiation, but I've been pain free for several weeks.

      8 days ago
    • mytoby's Avatar
      mytoby

      Thank you Sandy and RoxyMom, good words and advice, so much to take in. This is definitely a learning experience. Hard to remember all of this when I am out at the store shopping or at a restaurant eating, trying to learn to make good choices, eat with less artificial additives and eat more natural. How about artificial sweeteners? something like Truvia, Pure Via or stevia? to substitute for sugar?

      Yes, it seems like my arm is hurting more now than it did before, I try to see if it looks swollen, but doesn't look much different than the other arm, but hurts to touch, the part that I do have feeling in. Up top, under my arm and armpit are still numb. I have not heard the term lymphatic cording. What is that?

      Does it matter how many lymph nodes they take out? they took out 13 of mine, do they re-grow themselves or not? and are they important, does it matter that they are gone?

      I think the gal at the store that sells things for women that who have had breast surgery said I would need an ok from my surgeon before I get a bra, that's ok, it still hurts off and on, actually I would feel better if I didn't wear anything against my skin, but it would look funny, I would look lopsided, I tried that, put on a shirt and I could tell that it didn't look right. I feel tightness always in my chest, like a pulling, guess that is because of the stitches, and it looks freaky, dents in then back out and where there is fat and muscle it looks like an extra piece of skin, weird. guess this is my new normal. I read that many women with this kind of breast cancer get it in the other breast, so I guess it won't be a shock if that happens. Trying to stay positive. More later, thanks everyone.

      8 days ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Any natural sweetener made out of stevia, monkfruit or xylitol should be okay in moderation. Artificial sweeteners will cause an insulin surge just like sugar does, because your brain thinks sugar is coming in and orders the pancreas to pump out insulin to handle it; but when the sugar doesn't show up, the insulin has nowhere to go. Two things will happen: first, the insulin will act on whatever glucose is in the blood and you'll get cranky and tired from hypoglycemia; second, the insulin will promote fat storage (and inhibit fat burning), rather than send glucose to the liver which is supposed to convert it to glycogen for storage in your muscles for fuel. For some reason, the above natural sweeteners (which gram for gram are many times sweeter than sugar) don't act like artificial sweeteners (which are even sweeter) such as saccharin, aspartame, acesulfame potassium, or sucralose (Splenda--which some say doesn't act like an artificial sweetener, but others disagree). Other than xylitol, stay away from "sugar alcohols," which--while they don't cause the insulin surge--can cause XXX and have an unpredictable laxative effect.

      Once a lymph node is gone, it's gone. It cannot regenerate the way a lobe of the liver can. 13 nodes are a lot--your risk for lymphedema is higher. I agree with RoxyMom that you likely are experiencing cording--that was my first symptom too. Get a referral to a lymphedema specialist or at least an occupational therapist who can break up cording and does decongestive massage--and will teach it to you. If your surgeon doesn't know one, go to LANA (Lymphedema Association of North America) or StepUpSpeakOut.org--the sites will have lists of certified therapists all over the country.

      That extra skin is sometimes called "dog ears," and when reconstruction is done it can either be removed or used for reconstruction.

      One of the reasons you need a surgeon's written ok for a mastectomy bra (even a lumpectomy is a partial mastectomy) is so that Medicare or your insurance will reimburse you. Federal law states that anyone who's had any kind of mastectomy is entitled to two special bras per year, and one prosthesis per surgical breast every other year. Same thing for reconstruction--by law it must be covered for symmetry. Unfortunately, for any lymphedema products (compression garments, wrappings, pumps) we're on our own. The Lymphedema Treatment Act (bipartisan) is stalled in Congress.

      8 days ago
    • mytoby's Avatar
      mytoby

      Glad to hear RoxyMom you are feeling better. Have never heard about this cording thing, I don't go back to the surgeon until the week after Thanksgiving, wonder if I should give her a call before then and let them know. Might not hurt, but doubt that they will do anything. Thanks for the information.

      8 days ago
    • mytoby's Avatar
      mytoby

      My surgeon's office said what I am feeling is normal and I don't need to get in any sooner. I am scheduled to go back to see her on the 29th of November. It is still hurting, and numb, I am so tired of feeling this way, and I know it has not been that long, but wishing I had not done the surgery, and dealt with the consequences. Nobody told me ahead of time that I would feel these things, the pain, tightness, soreness and swelling. It is really depressing. I did get the results from the test that I am considered low risk for recurrence, and will be on a pill for 5 years, and they will do some additional blood work in a month. The pill they want me to take is called Anastrozole, there are side effects and I see if you have osteoporosis you should not take it, so I have to ask them about that, even though I did get the medicine filled. They said I have osteoporosis on 1 side and osteopenia on the other side. Maybe I can take it for a few days or weeks and tell them when I go back on Dec. 14.
      My husband got his outpatient surgery this week, on Wednesday he got his defibrillator implant, he is doing ok, sore and tired, but says today he is feeling a little better than the last 2 days. Hoping he will feel better and start to want to do something, and have some energy, all he does is sleep, watch TV, eat, fix a little bit of food, rest and sleep and watch TV. Our lives are not fun right now. I am still hoping to be able to move next year, waiting to hear back from the builder as to what the status is, if the house being built is sold, if we should look for another house, if we will get our deposit back, praying the right answer will come and we will stay here for a while longer, or our health will be better and we will be well enough to move in the spring, so much is undecided, and now we have the holidays coming. I don't want to decorate or do anything, it is all too much work. Prayers please for support, better health, and some positive outcomes for the future. Thank you everyone for listening.

      about 13 hours ago

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