• Did anyone choose to not take hormone blockers ?

    Asked by Raeyye on Friday, July 11, 2014

    Did anyone choose to not take hormone blockers ?

    I had a double mast 2 weeks ago , no reconstruction. I had a 1.4 tumor and didn't want radiation over my old heart , I'm 71. The sentinel node was clean, also the other 2 nodes he took where clean. I'm hormone + . I know I'll be offered a hormone blocker for 5 years. They both have lots of side effects. , Tam has heart and blood clots and uterine cancer and stroke. A has bone lose and joint pain and insomnia. What pill to choose. I can choose none. I had a stroke years back , I do have ostiopedia and I don't want Flosomax for it. I was a young healthy non pill taking 71. If breasts are gone , and nodes are clean why do I need drugs ? Do you know anyone who took no hormone blockers and are happy with that decision. I know one , she is a nurse and said lots of people don't take these drugs. I don't know what to believe.

    114 Answers from the Community

    114 answers
    • cam32505's Avatar
      cam32505

      I would ask your onc for their opinion. I would think at your age, maybe you wouldn't have too many hormones left to block. Also, if the side effects are so severe, maybe you want to take your chances and live your life with quality, and risk quantity. Good to hear that everything has gone well so far for you. that is a tough surgery at your age.

      about 7 years ago
    • ld_105's Avatar
      ld_105

      I hope you are recovering well. But no, the chance of recurrence is highest 2 years post DX. I would try one and see if it works for you. See: http://www.hopkinsmedicine.org/avon_foundation_breast_center/breast_cancers_other_conditions/breast_cancer_recurrence/

      about 7 years ago
    • barryboomer's Avatar
      barryboomer (Best Answer!)

      Don't take any more drugs.
      Get a Plant based diet and live your life...
      B

      about 7 years ago
    • leepenn's Avatar
      leepenn

      i think it's a balance of the potential benefits (risk of recurrence reduced) versus the potential problems (icky side effects that compromise your quality of life). i think it's super important to ask questions like these.

      so - this would be my advice....

      ask your team - what's my estimated risk of recurrence with no hormone blocker?
      then ask your team - what's my estimated risk of recurrence with the drug?

      things that go into that calculation include grade of the tumor, tumor size, node status, and more. these details will be available through your pathology report.

      seek a second opinion....

      then - make your decision.

      i totally totally see your point, and if your risk of recurrence is already low, then i think going without the drug makes a whole heck of a lot of sense. based on what little i know about your cancer (hormone receptor status and tumor size) - it seems like your risk is probably low and that a hormone blocker would only reduce that risk by a small amount.

      i hope you are able to make a decision around which you feel PEACE!

      about 7 years ago
    • lilymadeline's Avatar
      lilymadeline

      Please take the hormone blockers! They are one of the main reasons that so many women survive breast cancer now, and they increase the survival rate at least 50% in estrogen positive patients.
      And you already decided against the radiation, so you have already taken a big risk of reoccurrence. Why raise the odds for the cancer to come back? Because women's bodies keep producing estrogen all over the place actually for all of our lives. Your breast cancer can come back anywhere in your body even though your breasts are gone. Brain, liver, lungs, and bones are common places for it to resurface. You're still young at 71 and could have decades of life to look forward too! But having said that, Tamoxifen is usually for younger women and they will probably suggest Arimidex or another one. I've been on Arimidex for 4 years and the side effects are all treatable and I have good quality of life on 2 hormone blockers! In fact many women don't have any side effects at all! And many other women that do have SE have them go away in a few months. Why not give it a try at least for 6 months! If you have any SE, ask me and I can tell you how to handle them. But estrogen also has to be controlled by diet as well, so please speak to your oncologist about that and ask for a referral to a dietitian to help you. However they can check your estrogen level so that there is no guessing being done! That way you will know for sure if your estrogen production is turned off! So please have a long hard talk with your oncologist, ask him or her to help you through this and give you help with any SE that come up. This is your life and cancer is a killer, please do everything possible to fight it! Your life is so precious and important! Good luck and God bless!

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      If you decide not to take the Tamoxifen, maybe you could reconsider taking the radiation. Someone told me that any damage radiation does to your heart doesn't show up for about 20 years, so we figure it won't matter then anyway! I salute you for going through that big surgery when you didn't have to!

      about 7 years ago
    • PaulineJ's Avatar
      PaulineJ

      I'm going on 70 in Sept.I so wish my oncologist would let me not take Arimidex.I did ask her a year ago and she said no.I have 3 more years to go and suffer moderate to severe 24/7.

      about 7 years ago
    • lynn1950's Avatar
      lynn1950

      I take Arimidex and yes, it can cause joint pain and osteoporosis. But I prefer my chances of recurrence being lowered and Prolia and Ibuprofen take care of the rest. Plus exercise and a reasonably good diet. I would find out your risk of recurrence, try the Arimidex for a start, and then decide.

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I chose a double mask because I don't want radiation over my heart. I have had 3 episodes of BP going up and down and heart pounding in the last 5 years. I have a hardening in part of my heart and a slight leak in the mitro valve. Radiation is not good on me now as I have no breasts. I'm still in lots of pain as it only 2 weeks. I only know one person who is 10 years well and said no to the pills after 2 weeks of back pain. I do have a choice. She is an oncology nurse who had small tumor with clean sentinel node. She said lots of people choose no pills. Where are they ?

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I can't take ibuprofen as I had an ulcer 4 years ago. I have been told I had ostiopedia 10 years ago , I said no thanks to pills , I'll excersise more and take more calcium. My diet is almost perfect as my husband is a Paleo health nut. I would take the hormone blocker if I didn't have soft bones and a had a stroke more than 5 years back. I did 2 years of Curves , and now I do yoga 3X a week , or I did until last month.

      about 7 years ago
    • baridirects' Avatar
      baridirects

      I can understand why this choice can be a difficult one, particularly for someone who was at a fairly early stage at diagnosis. What I can tell you is that, overall, about 30% of all breast cancer patients go on to develop metastatic disease regardless of what stage they started in (even Stage 0 patients have been known to progress), and as Id mentioned, that chance is higher in the first 2 years. They still don't really know why some progress and some don't. I developed bone metastases only a few short months after having finished primary treatment, and at the time, I was on Tamoxifen. There are absolutely no guarantees, simply degrees of relative risk.

      It is worth a discussion with your oncologist as to your relative risk. If the risk for you developing further disease is low, and you can live with that possibility, then I would say it's a reasonable decision not to move forward with taking medication. I will say, however, that I am currently on a combination of Femara, Faslodex, and Xgeva, and the few side effects I'm experiencing are definitely livable.

      There are other things you can do to help support your immune system and keep the beast at bay....as Barry and others have said, dietary changes can be very helpful, as are daily exercise, yoga, meditation...there are a host of complementary therapies you can explore. For me, hypnotherapy has made a huge difference in controlling my stress and supporting weight loss.

      Namaste,
      Christine

      about 7 years ago
    • dxdiva2's Avatar
      dxdiva2

      I choose no pills. My tumor was tiny, not aggressive, clean lymph nodes and I had previously had a total hysterectomy including ovaries, so the oncologists and some other doctors agreed there was no reason to take the hormone blockers. I had taken tamoxifen 11 years earlier for DCIS and did not like the side effects so it wasn't hard to go along with their recommendation this time.

      about 7 years ago
    • moreorless' Avatar
      moreorless

      I was on them for four years and said no more to Arimidex I had all the side effects but I was in stage 4 13 years ago had masdectmy chemo radiation 2002 . 2011 was told cancer had spread to colon tried fast lodex it worked for about 4 months cancer then found in gall bladder and ovalaries tried another chemo buy had every side effect and felt quality of life would be better then quanity you may not get any of the side effects but get a second opinion and with your partner and family make the decision that will change your life You can always stop taking it if it is not letting you live the life you want

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Raeyye, you asked where are the people who didn't take the Tamoxifen pills----I didn't take the Tamoxifen, but I did have radiation and I had my doctor's approval not to take the pills. Unfortunately it sounds like you do have other diagnoses that conflict with your breast cancer treatment, so I would recommend you discuss the risks for a return of your breast cancer with your doctor again and then make your decision what to do.

      Remember that you'll have to weigh the advantages and disadvantages of each choice and make your decision considering the importance of what you may be "trading" for your decisions, such as your cancer coming back. One important thing you didn't mention is whether your osteopenia is being monitored with bone density Xrays every year to be sure it isn't getting worse, because you need to be sure your body is absorbing the calcium and Vitamin D you take. It's common for it not to be absorbed, which is why people need the Fosamax. If your bones get too weak, you won't be strong enough to exercise and do the things you do. In severe cases, people have to stay in bed to keep from breaking bones.

      Its not any healthier to be pill-free than it is to take a pill that puts your body back in balance. Medicine in moderation can improve and extend your life. Good luck to you!

      about 7 years ago
    • Genie's Avatar
      Genie

      Raeyye,
      I took Tamoxifen for about a year, and had a lot of side effects, body aches and weakness and fibromyagia, and including feeling more stressed and depressed, which I didn't even realize was from the pills until I stopped them. I tried Arimidex and didn't sleep for two weeks, so that was the end of that. My onc said the effect on my own long term recurrance was only about 5%, so he agreed it may not be worth it for me. I had surgery, chemo and Herceptin, so it's not like I skipped treatment. I am now 3 years post diagnosis, so far so good. It is different for everyone , my mother took Tamoxifen for 8 years and had no side effects, so, go figure. I would say it is probably reasonable,to try it and see how you do. You can stop the stuff if you feel too bad. But definitely ask your onc how it affects YOUR long term numbers, not some general survival quotes. Hugs to you!
      Genie

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Hi Raeyye. You've received a lot of good advice. I take Arimidex...it's the one for post menopausal women...and I had some pretty severe muscle cramps during the first few months. Bad enough to get me hopping around the room in the middle of the night. I've been on it now for 9 months and only have a rare, small muscle cramp. I didn't know if I could stay on it with the severe cramps. I couldn't use my hands for an hour at a time because they would cramp up. They never cramp anymore. Just a rare cramp in my foot or toes. I don't really have hot flashes...a slight one here or there...because I've already done that during menopause. My hair is thinner..whooopeee...at 67 there more important things. I sleep like a rock. So..I guess I would say try it...give it a year...because it is a lifesaver. That studies all say that Tamoxifen and Arimidex are lifesavers. I'm not sure why you can't have radiation. Can they not target it in such a way that it doesn't hit your heart? They are very precise nowadays in targeting only the area of your breast and underarm. Good luck with whatever you decide Raeyye. Keep in touch!

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I had a double mastectomy so I wouldn't need radiation. The tumor was small 1.4 C. Sentinel node clean , 2 more nodes checked , clean. Why would I need radiation ? I could have had a lumpectomy , I chose a double mastectomy instead because of 4 black spots ( not cancer ) in my other breast. It's only 2 weeks , drains are out , still lots of pain and underarms swollen. They will offer me a pill in a few weeks , my oncology nurse friend who had a double took no pill. She said I don't need it , I'm 71 and I always looked and felt like 50. Thanks for your advice everyone.

      about 7 years ago
    • PaulineJ's Avatar
      PaulineJ

      MaryChristine I've been on arimidex for almost 3 years now.And difinitely want to stop it.I didn't realize it was for post menopausal women,but can't stand what I'm dealing with.I have just the opposite on what you say.And more.I was going to tell the surgeon in a couple of weeks when I see him for the 100th time, about the oncologist not letting me get off of it,but now since I have 3 and somewhat more years to go and what you're saying I guess they won't let me stop.

      about 7 years ago
    • Lindzy59's Avatar
      Lindzy59

      diagnosed with stage 4 breast cancer with bone mets over 3 years ago. I take the blockers. first tomoxifen but it quit working. Now on exsemistane and have not had many side effects. Maybe.. LOL I do have lots of pain but take extended release morphine and percoset for break thru pain. Have neen on oral chemos since. Currently on Afinitor. Am 55 and not ready to throw in the towel. cancer was in my spine, hips, ribs and sacram. last week PET showed it is active again in mart of my back and left hip. which I figured since I have had more pain recently in those spots. This really made me mad! Am starting the Crazy Sexy Diet by Kris Carr. Sure wont hurt and may actually help! Good luck and cyber hugs!

      about 7 years ago
    • KLC's Avatar
      KLC

      Hi Rayeyye,

      Before taking anything, get the books - Dr. John Lee - what your Dr. may NOT have told you about breast cancer and Heal Breast Cancer Naturally by Dr. Veronique Desaulniers. Both cover detailed explanations of how your hormones themselves do not cause cancer. It's the toxins that build up in the body that mimics the aggressive estrogen hormone estradiol (E2). This estrogen becomes aggressive especially when introduced to various chemicals from the environment and bodycare products. It's the predomoniant natural estrogen during reproductive years and has been linked to the development of various female cancers such as breast, ovarian and uterine. Again, however, the hormone itself doesn't cause cancer (or every 21 year old would have it). Estriol (E3) is actually a protective estrogen. (protects brain, bone, heart, skin, and many other functions within the body) (E3) Estrone is typically the least abundant of estrogens but is most abundant in postmenopausal women. Estrone can be converted into estradiol (the most aggressive).

      Should you decide to take the natural path, it's important to evaluate what may have caused the breakdown in the body and to try to heal it. Most common in hormone positive breast cancers is a condition known as estrogen dominance. (unopposed estrogen). As we age the body's production of progesterine decreases (progesterine is the preventive hormone that is supposed to keep estrogen in check). So we make less progesterine, but, we take more estrogen in. Fake estrogen, called xeno estrogens such as from environmental toxins, synthetic drugs (ie : hormone therapy replacement, birth control pills).

      I have decided not to take the Tamoxifen as I am not comfortable with taking a known carcinogen (even on the World Health Organization's list) which can severely damage the liver (which you need to metabolize hormones). It is definitely a personal choice and we all need to be comfortable with our decisions.

      If there is one thing for certain, this "journey" definitely presents tough choices. Best of luck to you ! ! ! : )

      about 7 years ago
    • tam4givin's Avatar
      tam4givin

      I to am choosing not to take them, and the more research I do the more glad I am not. My oncologist tried hard to get me to take Tamoxifen, I asked, then begged, then insisted on the test to see if I could metabolize it. I can not. She still wanted me to take it! Sited 2 studies from years ago that they say show I would still benefit! LOL I looked up the studies, saw they were on all woman who were POST menopausal, (I am not) and other things in the studies that do not make them good enough for me. There are more studies that say I would not benefit. There are studies that say Tamoxifen increases chances of a worse kind of breast cancer! So many people are not doing research and just believing doctors that do not have the time to keep up with all the research! The test they do to show how much I would benefit says my chances of return would go from 12% down to 7%, that is only 5%! (If it was really working.) I already have bad joint pain and hot flashes. I had the same small slow growing tumor with negative nodes. Radiation was not even recommended with the mastectomy. I think it would do more harm to body than help.

      about 7 years ago
    • tam4givin's Avatar
      tam4givin

      After I refused Tamoxifen the oncologist sent me to a special GYN doc to see if I was still menopausal or post. The GYN doc said I was post (I started a period 2 days later.) The oncologist tried to talk me into Famara. I am so glad I refused again, because what came out in the news recently: Famara is good for fertility because it works by blocking estrogen production, tricking the ovaries into producing MORE of the hormone! The oncologist says I could take shots to make ovaries stop, OR have surgery to remove them! (I have enough health issues the surgeon made me go through 5 months of tests before he would do surgery, and then I had major complications! I am going to jump right up on another operating table! NOT!)

      about 7 years ago
    • moreorless' Avatar
      moreorless

      I would be Doctor shopping for three doctors surgeon oncologist and ob-gyn . We are talking our lives here and putting that life in their hands and if you do not trust yours then even the best Doctor is wrong for you.

      about 7 years ago
    • Jbro's Avatar
      Jbro

      I've been taking Anastrozole for a little over a year - onc says I should take it 10 years. Most of the side effects are annoying but manageable. I intend to discuss AI's vs. quality of life with my doctor at my next appointment. Unless they make a significant difference in preventing recurrence perhaps the risk is worth it.

      about 7 years ago
    • Ritag's Avatar
      Ritag

      I just saw my onc last week. I have been on arimadex for over 3 years! I hate it, but I keep doing it. My dr. says it is my lifeline. And after I read a study recently that reported. 92 percent success rate of almost 5000 woman not having a recurrence at 5 years I was motivated to keep with it.

      about 7 years ago
    • carter4's Avatar
      carter4

      I WOULD NOT BE ALIVE - if I had not taken mine - the side effects are not that bad - attitude helped me too - you will not get all of the effects listed - they come and go!

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      It really boils down to whether a recurrence of your cancer would make you regret not doing something that could help prevent it recurring. By the time you know if the cancer recurs, it will be too late to have the same chances of prevention. Doctors do the best they can to predict based on what other patients report and experience, and collectively we are fortunate to have the benefit of the statistics we do.

      It sounds like you have a good life looking and feeling like 50. It would be a shame to lose it if you can take an action to prevent that. Best wishes for success!

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Mastectomy doesn't mean you don't need an AI. Mastectomy relieves your body of any tumor burden but it doesn't mean you can't have a tumor elsewhere. Tamoxifen, Arimidex (AI's) starve tumors when they are trying to start. If you are fortunate enough to have a tumor type that has a medication, why wouldn't you take it? There are many women out there...suffering...dying...with triple negative tumors. Be grateful you have something that can give you a chance at long life...and take it!

      about 7 years ago
    • PaulineJ's Avatar
      PaulineJ

      I don't understand how arimidex stops tumorsAfter have bc/lymp noyeds rermoved 2 years ago.I ended up with 4 tumors and a bipsass surgery of my aorta valve in Jan.when the ultra sound saw one tumor in Sept.after persuing the cause of some symptoms I had for a year.

      about 7 years ago
    • Genie's Avatar
      Genie

      Lets get back to, its different for everyone. For all of the people lecturing us on the side effects "are not that bad" and "do everything you can," please remember that you are maybe lucky, and are not having such severe effects. For me, I was miserable. The fibro, the emotional wreck, I would cry at the drop of a hat. I could not return to work full time, i was so weak. 14 months of being miserable. I cannot tolerate depression meds either. Even my onc said "If I felt that bad, I wouldn't take it." It really wasn't worth the 5% odds improvement.

      Carter4, I'm so glad you are doing well, but you really can't know if the Tamoxifen did it or not, unless you are observing a tumor shrinking. It does improve our odds, statistically, but can cause other cancers, etc.

      Please, let's support everyone in the decision that is right for THEM.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Genie, it sounds like you could not tolerate tamoxifen...and you decided to not take it. At least you tried. You say it doesn't improve survival statistically but that simply isn't true. I wonder where you are getting your information. The first major study of Tamoxifen improved survival in 50 percent of the test subjects and did shrink tumors in stage IV. I think you've received some misinformation.

      about 7 years ago
    • Genie's Avatar
      Genie

      Marychristine, please read my comments again. I did not say it doesn't improve survival statistically. I said the statistics are different for different people. It is not a 50%improvement for each individual. As I said, for me it is only 5%, after chemo, herceptin, etc. These things are more complicated, not that simplistic. I have done A LOT of research. My husband also, and he is a PHd in bioengineering, involved in breast cancer research. He can help me interpret research you read on the internet. And quality of life has to be one of the considerations. What good is surviving the cancer, if you feel like you want to jump off a cliff every day? ( and yes, I get counseling). I am starting to feel much better now, and getting my life back. I wish I could have tolerated the stuff, but I couldn't. I don't need lectures about it.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Genie...I'm sorry...the way I read your response...I thought you were saying 5 percent for everyone. Risk v. benefit for you seems to have tipped toward low benefit and high risk of side effects...and I agree everyone must weigh these things for themselves. I thought you were suggesting that no one should take these meds (AI's) because their risk is only 5 percent. Sorry again...chemo brain me must have misunderstood. I'm am hoping to find myself off Arimidex in 4.25 years and still be cancer free and AI's have been proven to help with this goal.

      about 7 years ago
    • Genie's Avatar
      Genie

      MaryChristine, it's okay. We all have to find our way through this awful maze as best we can.

      about 7 years ago
    • tam4givin's Avatar
      tam4givin

      Studies usually show what the people paying for them want them to show. Guess who pays for them? Statistics are read differently by different people. Many things have to be taken into consideration. Most studies for Tamoxifen have been done on POST menopausal woman. But has any oncologist told you that? We have no way of knowing how many woman who do not take it do not get any new tumors with in 5 years or 10 or even. We really do not know all the harm these drugs do. Had any oncologist ever told you about the studies that say it causes a worse non hormonal cancer? Few people do any real in dept research on studies. Most just go with ever the oncologist says. Where do they get their info? Who pays for and puts the info out in their conferences? Do they have time to check out what they are told or really investigate the studies? I do a lot of research and pray for discernment on decisions. I pray everyone does research, and makes the right decision for their case.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      I think what some people are trying to say is that no one knows how bad the side effects will be for them unless they TRY it. I'm one of the ones who couldn't take Tamoxifen, but I still would strongly recommend that people TRY everything their doctor thinks is appropriate. Some people have bad side effects and some people don't. You can always stop taking it, as I did.

      tam4given, although I've done a little research, our oncologists are being paid well to do that for us. They have the educational background that we don't have to interpret the research for us. If you don't have confidence in your doctor's knowledge and his intentions for you to have the best treatment for you, I would respectfully recommend you find another doctor you can respect. You deserve to be relieved from "reinventing the wheel" in oncology. We have more fun things to do with our time. Best wishes.

      about 7 years ago
    • carter4's Avatar
      carter4

      Genie/just an FYI
      - I am stage 4 and it did save me - my onc and gyn said I would not be here -

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      When we began the "war on cancer" some 40 or 50 years ago, the federal government, with our tax dollars, began pouring money into research. Tamoxifen is one of the products of that research. Most research is begun by cancer researchers who are not paid by or hired by or employed by pharamceutical companies. Pharmaceutical companies become involved during the clinical trials or once a compound has been found because they want to market it...naturally...someone has to put up the big bucks of producing a medication. Pharms do do their own research but cancer research isn't where their big interest (potential profits versus cost of research) lie. "In January, 1977..........Fisher recruited 1,891 women with estrogen receptor-positive breast cancer that had spread only to the axillary nodes. He treated half with adjuvant tamoxifen and the other half with no tamoxifen. By 1981, the two groups had deviated sharply. Treatment with tamoxifen after surgery reduced cancer relapse rates by nearly 50 percent. The effect was particularly pronounced among women above fifty years old--a group most resistant to standard chemotherapy regimens and most likely to relapse with aggressive, metastatic breast cancer. Three years later, in '85, when Fisher reanalyzed the deviating curves and relapse and survival, the effect of tamoxifen treatment was even more dramatic. Among the five hundred odd women older than fifty assigned to each group, tamoxifen had prevented fifty-five relapses and deaths. Fisher had altered the biology of breast cancer after surgery using targeted hormonal drug that had barely any significant side effects." (from) "The Emperor of All Maladies" by Dr. Siddhartha Mukherjee, pages 221,222 referring to a study, "B. Fisher, et al, "Adjuvant Chemotherapy with and without Tamoxifen in the Treatment of Primary Breast Cancer, Journal of Clinical Oncology 4, no. 4 (1986) 459-71"...This was the first such study...it has been confirmed repeatedly. The incidence of uterine cancer increases from 0.2 to 1.6 per thousand women when they take tamoxifen. The benefit of survival with tamoxifen so greatly outweighs the risk of uterine cancer as to make it not even worth considering.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      i.e. uterine cancer increase of to 1.6 women per thousand should never stop anyone from taking tamoxifen or Arimidex or any estrogen blocker.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      MaryChristine, thank you very much for the above info. Hopefully it will relieve those who don't trust what they hear.

      If we don't trust our experts (our oncologists), we need a new one.

      about 7 years ago
    • lilymadeline's Avatar
      lilymadeline

      Hi MaryChristine and BarbarainBham and everybody else for that matter....
      I have to say that I actually did get uterine cancer from Tamoxifen, so I guess I am the 1.6 thousand woman. However I would do it again because hormone blockers have helped save my life due to my stage IV breast cancer! And I strongly believe in hormone blockers!!!! My breast cancer feeds off of estrogen therefore I must shut down all the estrogen production in my body! And all other women with estrogen positive breast cancer should do the same if they want to increase their odds of survival! And all I have to do is have my oncologist check my estrogen levels in my body! It is so easy to check that! Ladies if you are trying other things besides hormone blockers to stop estrogen production, all you have to do is have your oncologist check your estrogen levels to make sure that whatever you are doing is working! It is so easy to do, and so important as well! Good luck and God bless!

      about 7 years ago
    • KLC's Avatar
      KLC

      As you can see there are a lot of conflicting opinions on the subject. It's a hard choice. Please make sure you do your research thoroughly and most important is YOU have to be comfortable with that decision.

      Here's a few more links to info you may find helpful.

      http://all-natural.com/tamox.html

      http://elynjacobs.wordpress.com/2012/01/15/natural-alternatives-to-tamoxifen/

      http://www.livestrong.com/article/95391-natural-alternatives-tamoxifen/

      http://www.mayoclinic.org/drugs-supplements/tamoxifen-oral-route/side-effects/drg-20066208

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Not sure who Kelly Turner, PhD is, nor what her background is ?? What is her Ph.D. in and where did she matriculate?? What research has she done? I cannot seem to locate this valuable information on her credentials. She sounds dangerous since she is recommending soy which is high in physoestrogen...um...we don't want estrogen if we are estrogen postive cancers. The supplements flaxseed and tumeric...my word...how much would one have to take to block every estrogen producing cell in their body? Looks like unwise alternative medicine but I wish you nothing but the best.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Think I found her. I don't see anything that qualifies her as a cancer specialist.
      http://sowkweb.usc.edu/sites/default/files/faculty_members/curriculum_vitae/Turner%20CV.pdf

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      She wrote a book of Stories of Cancer Survivor and interviewed them as to what they did to help.
      She is NOT a cancer expert.....just chronicled and interesting book of stories. I don't think you have all your facts together and WHY the Hostility? You DON'T have to read it....lol

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      Hey Mary Christine...check below...

      http://www.drkellyturner.com/about/

      Very Good Credentials and Motive.
      Don't judge people so fast.....ugh!

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      My regular Dr gave my Progesterone cream 8 months ago because saliva hormones tests showed high cortisol. I didn't use it everyday because I thought I had more headaches. Then I really stopped it as I thought it gave me BC. Saw him today for something else and he said I should be using the cream because it blocks estrogen ??? Its still have 2 weeks before the Oncologist offers me an AL drug. I'm really leaning toward giving it a try. I don't want to not take it and be sorry. Do I start the natural Progesterone cream while I wait ?

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      barryboomer, you are correct. I probably do sound hostile and I don't mean to. I'm a retired RN and I care very much about people and their health care. I am not hostile to any person but rather to the possibility that women are going to make choices that could cost them their lives. I want to scream as loud as I can...'STOP" because I want them to live. No treatment is 100 percent guaranteed for any of us but some of us have more tools and weapons...and some of those tools and weapons are estrogen blockers. To throw away anything that gives an edge to surviving goes so against my grain who will do all the things proven to help because I want to live so much. When I was first diagnosed so many people told me of alternative treatments. One was actually about treatment with urine. I know these loving people meant well but we get so many messages of this alternative treatment and that alternative treatment that it is very confusing for many. If I am strident it is because I want women to error on the side of life and that means traditional treatments. One of the links recommended above was so dangerous because it recommends soy...disastrous for estrogen dependent tumors. So I apologize if I sound hostile. I am just frustrated.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Barryboomer...by the way...your link to her credentials...it isn't very good. Research of what? PhD in what? You see...you could have a PhD in basketweaving and her research cold be in weaving materials. Tells us nothing. I suspect her research is in sociology of those who had remissions and not in the science of such remissions but I haven't read her book.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Raeyye, Ask your oncologist about Progesterone. Progesterone's interaction and role in estrogen levels is very complicated. Your oncologist is the hormone expert for cancer and the best person to ask.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      By the Raeyye, I'm so glad you are going to try the estrogen blocker. You've done so much to survive already...keep up the good fight!

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      All I did was recommend a BOOK.....not making anybody read it....lol
      GEEZE.....What kind of Special Credentials do you need to interview people and tell their stories. This isn't about Urine Therapy. Actually the number ONE common thread was controlling Stress.I think a Plant based diet was down on the list. Many did Chemo and Radiation....some did both and some just did Diet etc......She DID NOT do any research.....Just told stories that were told to her. I can do that. She was interested in Survivors of Cancer and what worked for them.....She is not telling people with breast cancer with estrogen positive to take a supplement that goes against that. BUT Soy extracts and Curcumin May help other cancers.....Information is powerful and we can use it any way we want...This isn't about alternate therapies....SO....lighten up and let people check things out and make up their own mind. Nobody has all or any answers in cancer. The Industry kills the aberrant cells and our immune system is trying to do the same and control the cycle where the cancer cells don't die (immortal)....They are our OWN cells.....gone astray....Killer T cells falling down on the job for some reason. I believe there is a time for killing and then a time for healing. Let's use everything at our disposal. Hope I explained myself....I seem to have been attacked over JUST recommending a Book...Hope you get better and do well. I'm scared everyday and pray a lot.......Never did the chemo or radiation but that's MY choice....Take care.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      MaryChristine, I get what you are saying and understand your frustration. I have also worked for doctors most of my career and know that most are highly ethical and motivated to stay up to date in their field to help their patients. Besides for years of education and training, they are attend national conferences where researchers speak and exchange ideas about treatments and new ideas. They are in a teaching hospital for a medical school, and it's possible private doctors are not the same caliber. I feel privileged to be treated by these doctors and think it would be ridiculous to think I or any other lay person would know more than they do about cancer treatments. I don't understand patients with so little regard for their doctors. . . .

      about 7 years ago
    • Genie's Avatar
      Genie

      You don't understand patients with so little regard for their doctors. Oh. This tells me you have luckily never run into a bad one. They are out there, believe me. I am not just referring to cancer doctors, but I have had some really bad experiences from doctors who are not paying attention, or just aren't good enough. Of course you want to trust them, but after you have been burned a few times, the trust comes a lot harder. Bad advice from a doctor can have some serious consequences. I do trust my oncologist now, but for any serious surgeries, etc, I will get second opinions. And i will definitely read up on any recommended meds. I have been hurt enough.

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      A Doctor is JUST a Person who has a Great Memory and sometimes wants to get in a field that helps people...BUT They are Humans with their own problems. Treating all these cancer patients is VERY hard and probably very hard on the Docs psychologically....They have a TOUGH Job and I wouldn't want their job and I admire them.
      BUT they learn a LOT after school from the Pharmaceutical Industry. THEY push the drugs and have stock holders to satisfy. IF they want to learn about any other aspect of cancer THEY must do it on their own. The Medical Schools are Financed to a great degree by Big Pharma.....SO...I have my Original Surgeon who did the Biopsy that diagnosed my cancer. I told him I didn't want to do mainstream treatment and WOULD he order scans and see me from time to time. He said yes and told me he has other patients that came back to him after treatments at big centers etc. and are doing well on some nutritional therapies....HE is a proponent of Raw Plant Foods. BUT He told me HE can't tell any of his Doctor Friends as He could get in trouble. They make fun of him and HE stopped telling anybody that he helps people with cancer in just a benign way...I find that alarming. I'm glad he is there and he did one surgery to remove a node in my groin that grew fast.
      My Point is that Doctors are taught about the drugs and new drugs....they are given samples in the office..( All Docs ) Given free trips to retreats and hotels.....It is NOT a pretty Picture....

      about 7 years ago
    • KLC's Avatar
      KLC

      LOL! I thought there was a bunch of new answers and it turns out to be MaryChristine and Barry going at each other. . .wish I could "import" a little pair of boxing gloves into the post. We all have to agree to disagree sometimes.

      I think when you have an open forum like this the person who throws out the question realizes the responses are only opinions. That's why it's our job to do our own research and make choices best for us as individuals.

      Raeyye - I saw your post that you're going to try meds. So you've made a decision. Hope everything goes well for you ! : )

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I see the oncologist July 28. I got referred to the best Oncologist in Reno , just the one I wanted. I was told I had Ostiopedia 10 years ago by a Gyno. I said No thanks to Fosomax , I'll excersise more and take more calcium. I'm hoping I can take the AL drug with this condition.. I may have to take 2 drugs ? Better than 2 cancers.

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      MY Opinions are Just MY OWN....Not saying anything else.
      JUST MINE alone. Most Docs do a great job and I admire them.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Raeyye, I hope you can take an estrogen blocker also. When did you have your last bone density scan?

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      LOL KLC...gloves are off.

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I had my last bone scan 10 years ago. I never believed in drugs. My husband is a health nut , Palio and beyond. I eat better than most people and gave up wheat, grains and sugar a year ago. I'm 71 , and I look 50. I did Curves for 2 years , the gym and yoga all these last years. I'd like to try the drug and maybe it won't be bad . My friend is only on Evista for life. I think she needs a hormone blocker too .

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      It worked for my 82 year old friend who took it for 7 years.
      Seems ok...

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      They will do a baseline bone density scan either right before or right after you start an estrogen blocker. You and your onc will have more info to make a good plan of action. I have a little osteopenia but I'm taking calcium and D3 ... I'll have another bone density scan in a few months. They follow you closely when you are on these estrogen blockers. I've been making super juices for my mornings now. I think I almost have to be careful to not overdose on vitamins...lol..

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      Raeyye, ask your onc about Evista. Seems they are using it as an estrogen blocker in cancer treatment now.

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I wonder if I can order a bone density scan from my primary Dr before I see the Oncologist ? I always took lots of vitamins. Now my husband is giving me MSM and Tumeric with all the others.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      I think your onc is the person for this. He/she will be able to talk to you about risk versus benefit in relation to your cancer. Onc's are the experts when you are dealing with cancer so he/she is your best resource. Write down all your questions so you don't forget!! LOL..I always forget something if I don't write it down.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Genie, I've had some doctors that I didn't like, but they were private doctors who were their own boss, not doctors in teaching hospitals/medical schools who answer to administration, are hired and fired if they don't measure up, and have the benefits of sharing information with other faculty on-site as well as at conferences.

      I believe in second opinions---my point about not understanding why patients have so little regard for their doctors was misunderstood, in that if you don't respect your doctor, you should immediately find one you do respect. They get paid too much to go to less than the best oncologist available, one you can trust to treat your cancer and not suspect ulterior motives.

      Doctors who work for the government or have NIH funded grants have to report any conflicts of interest with the research they apply for, which would mean any stock in pharmaceutical companies. The doctors I worked around never owned any pharmaceutical stock for that reason. FYI, NIH is the one with the big multimillion dollar grants that usually make a real difference. Isn't that interesting?

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      When I was first diagnosed, at a teaching hospital, I went to Stanford, paid out of pocket, for a second opinion. I was relieved to learn that my treatment plan was exactly what Stanford would do.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Raeyye, please get regular bone density Xrays (called DEXA), so you will know if your body isn't absorbing your calcium and Vitamin D. That's very possible since you are already deficient, and it can be caused by a lack of estrogen or some other things. Since you know you don't want estrogen, you may need to take Fosamax.

      Sometimes people need to take pills to get better. Please don't let that be a barrier that keeps you from getting better. Pills are one reason people live longer today than they used to, so take advantage of what's out there.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Genie, I also read up on my diagnoses and recommended meds, but that's just because I'm very curious and I want to be able to ask well informed questions when I see my doctor. That doesn't make me feel angry towards my doctors. I believe in peace and tranquility. It's very peaceful and tranquil at my house. . . .

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Raeyye, you probably know this, but be sure you make a list of the things your husband gives you to show your oncologist, and ask him if they will be OK to take with whatever he recommends. Sometimes things interact in a bad way, especially with supplements that the FDA doesn't monitor for milligrams, etc.

      about 7 years ago
    • Jbro's Avatar
      Jbro

      This has been an interesting discussion and one in which there are so many opinions and experiences. I have the utmost confidence in all of my doctors and feel very comfortable asking questions pertaining to my treatment. Good luck to all of you on your "journeys".

      about 7 years ago
    • tam4givin's Avatar
      tam4givin

      I am so glad some people have doctors that they have confidence in. Some people do not know medical care is much different in different parts of the US. And some places if your insurance is Medicare you are treated differently. Some areas you have very few doctors who will take any more Medicare customers. My nurse friends who have gone with me to appointments are always shocked at the quick in and out I get from most docs, and how hard it is to get a doc to even see me. I use to think when elderly people told me their stories about docs once they went to Medicare must be over reacting. I was wrong! That is why I have to do so much research on my own, and how I found out so many doctor recommended plans do not have good research to back it up.

      about 7 years ago
    • barryboomer's Avatar
      barryboomer

      Hey Tam4givin.....
      If the Medical Business was NOT based on HOW many patients and how many tests you run things would be different. If DOCS got a really good salary like what the President gets.....no matter how much the do.....they would take more time with patients and probably LIKE their job much better. THEY are stuck in a toxic system of middle men and whores....It's NOT their fault.

      about 7 years ago
    • MaryChristine's Avatar
      MaryChristine

      tam4givin, do you have a teaching hospital in your area? They are usually the most up to date and are great at accepting Medicare.

      about 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      TAM4GIVIN, I totally agree with MaryChristine about looking for a doctor at a teaching hospital/medical school. I see you're from Tennessee, and you could try somebody at the University of Tennessee Medical School in Nashville. You shouldn't have to beg to be seen with Medicare. You could call the American Cancer Socity for a recommendation and other help.

      Its my opinion that doctors at teaching hospitals are motivated by the love of medicine and are enthusiastic about keeping on the cutting edge, all while making a modest salary compared to those in private practice.

      about 7 years ago
    • tam4givin's Avatar
      tam4givin

      Thank you to everyone for trying to help.

      University of Tennessee College of Medicine is in Knoxville, a few hours away.

      There is a teaching hospital in Nashville.
      (They have been in the news a lot for cutting hundreds of staff people, to few of staff, letting in turns operate with no doctor on site, etc.)
      It is over a hour away. I have other chronic illnesses to and it very hard to keep traveling that far.
      I do go there for most of my cancer care. (because they use to have a very good reputation, and I figured they had to be better than the little one here that is rated real low.)

      My nurse friend who has gone to every appointment with me is in total shock at the bad and or lack of care there.)
      . Most of the young medical people I see there are nice, the older ones seem to just want to hurry up.
      I usually have to see nurses not doctors.
      There is no cancer society in my city of 150,000 people! The closest one in Nashville says they do not know anything about my city and can not recommend docs.
      Thankful this life is short the next is forever! :)

      about 7 years ago
    • jem1332's Avatar
      jem1332

      It would be wonderful if the statistics (clinical trials) would have more information and cover more than 5 years. I heard of a clinical trial to determine if women over 70 with early stage cancer should have radiation. There were 650 women in both groups and the study lasted 5 years. Statistical there was very little difference, but all the women took an AI for 5 years. So if your over 70 radiation can be your & your doctors choice, but you still have to take an AI. I didn't have any side effects from Arimidex for the first year, but now I do (which is unusual). The biggest problem is that I not getting enough sleep so I might try Melatonin. How is it different from other sleep aids?

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I don't need radiation , no lymph involvement and I had a Double Mastectomy. I can choose Al drug , or turn it Down , my choice. I will try it.

      about 7 years ago
    • KLC's Avatar
      KLC

      @jem - Melatonin is the preferred sleep aid "assistance" by naturopaths. It's also been shown to have protective aspects in cancer prevention. Melatonin is a chemical that is produced in the body. Some naturopaths would also prescribe tryptophan. You should also follow the basic steps in helping promote sleep naturally - exercise during the day, don't eat within 4 hours of bed time, keep the room cool, make sure it's dark, don't have electronics in the room, warm bath before bed, etc. I'm sure you've checked into tips to help.

      about 7 years ago
    • KLC's Avatar
      KLC

      Amen Hollis Walker. . .

      about 7 years ago
    • Raeyye's Avatar
      Raeyye

      I was told to take 30 mil or Melatonin an hour or two before bed last year to help sleep. I tried tryptophan and had awful scary dreams. Marching milk bottles and slices of cantaloupe. Never again.

      about 7 years ago
    • KLC's Avatar
      KLC

      LOL ! ! ! Like a flashback to that old Disney movie - - was it called the sorcerer's apprentice? With Mickey Mouse and the marching broomsticks ! ! Sounds like tryptophan is not for you. I've been lucky my entire life, within minutes of my head hitting the pillow - I'm out. The breast cancer diagnosis didn't change that. Only difference now is while I used to sleep straight through, I wake up a few times during the night with sweats (the chemical menopause at work). Well good luck with sleeping issue and the Ai. Have a great weekend : ) Karen

      about 7 years ago
    • anna1951's Avatar
      anna1951

      I had to look at what made the cancer grow, refused chemo and radiation and on second type of hormone blocker plus there are several newer ones. Saw OB/GYN for side effects and do alternative medicine, but it is up to each person. I had lymph node involvement and unclear margins.

      about 7 years ago
    • moreorless' Avatar
      moreorless

      I stopped takin Arimidex and all med after 3 years. My Doctors onc gyn primary care were all just adding more meds over 20 different medications to treat symptoms and not finding the cause of them. I was on anti depressent and found out 10 years later that was the cause of my diarrea problem and arimidex was the reason I could not use stairs and even had problem stepping up a curb. I am short and could not use my stepstool to get things from upper cupboards. My cancer has spread to colon gall bladder and ovaleries. Is it because I stopped taking arimidex or did they cause the cancer to metisized but for 5 years I felt better and I was almost back to what used to be the normal me. I could walk without pain and without worrying was I going to have a full load in my diaper without notice again

      about 7 years ago
    • DebraC's Avatar
      DebraC

      How long did it take for side effects to occur??

      over 6 years ago
    • lilymadeline's Avatar
      lilymadeline

      Hi Debra, Every body responds differently. Usually SE with hormone treatment hit hard the first day and then slowly recede while your body adjusts ( overnight menopause ) but some women don’t get any or very few SE and other women get them all. UGH! It is rare but sometimes the SE can take a few weeks to a month to surface....but again most SE with hormone treatments are gone in a bout 6 months.
      It just takes work to deal with them, but they very important drugs in the fight against BC. And if the first one doesn’t work, try another! I’ve used about half a dozen of these. Good luck and God bless!

      over 6 years ago
    • Beatrice's Avatar
      Beatrice

      I am on my second one - tried Letrozole (Femara) and could not handle it and now taking Anastrozole (Arimidex) and having a really hard time. I already have joint problems, fibro and nerve damage from the breast surgery - adding one more thing on top is just too much. I'll give it a bit longer but probably not much. If I can't get out of bed without Percocet, how good is my life?

      What I do not understand is how anybody can say they are hurting 24/7 and their doctor won't "let" them quit the AI...??? "Let"??

      over 6 years ago
    • islandlady's Avatar
      islandlady

      I had surgery, chemo and radiation. Have tried all 5 of the estrogen blockers and I am allergic to all of them.....body rashes, stinging, itching.....felt like fire ants on me all the time. I gave up after about 9 mos. I have survived 5 years as of this month and very grateful. I am told odds are cancer will return. I try to do all I can to prevent it. I will be 77 in June, but I am a fighter.

      over 6 years ago
    • Raeyye's Avatar
      Raeyye

      I had a Dexa scar last month. I don't have Ostiopedia anymore ? No , I still won't take hormone blockers. I do have trunkle lymphadema and lots of pain 10 months out. I was just Brca tested , my daughter is Brca 2 . I don't want more surgery at 72. I really just want my life back , no more pain.

      over 6 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Raeyye, it's nice to hear your update. I'm sorry you feel bad---you don't say what is making you feel bad, unless it's the trunkle lymphadema. I hope you're getting good treatment, including physical therapy for that.

      I want to reassure about the reputation of the teaching hospital in Nashville. MANY of the teaching hospitals in our country had a loose interpretation of supervision for surgical residents and fellows (NOTinterns who are a different educational level) because they've completed medical school, at least 1 year internship, around 6 years of residency and sometimes several years of additional specializing after that, including licenses and board certifications. In spite of that, in the teaching institution they are still called students in the medical school environment, although they are qualified to set up a private practice as a General Practitioner or Internal Medicine physician many years beforehand. Instead they chose to stay at the medical school to learn and specialize while making very little money, because they are driven to be the best. Because "the Best" (faculty physicians) are so busy, they trained their proven residents to perform surgery in their presence, and then trusting their skill might step outside the OR, but still be available by beeper immediately if needed.

      Although it's certainly better to have more doctors than less doctors actually with the patient, and standards have gotten more specific, saying that the faculty physicians have to be there rather than in another building, surgical residents who had been left without their supervising faculty physician were actually more educated than most of the doctors we go to in private practice.

      The TV show "Grey's Anatomy" is a good example of how faculty doctors supervise the physician residents. I hope that will make you feel like the Nashville teaching hospitals are still good places to go and can help you feel better. Best wishes.

      over 6 years ago
    • sheliblue118's Avatar
      sheliblue118

      Hi - I was stage IIIA and had 5 positive lymph nodes. Bilateral mast, chemo, radiation - then started arimidex in September - horrible side effects, so onc changed me to Femara - even worse side effects - vaginal atrophy so bad that I was getting infected cuts on the outside of my vagina that were horribly painful - thought I had herpes, but it is from the extremely DRY SKIN breaking down and getting bacteria and then being infected - finally read that coconut oil would heal everything and relieve the dryness - HOWEVER - I am NOT willing to live in extreme pain with all of the other awful side effects - my personal choice, and others don't have the side effects as bad - I just want to have some quality of life, seeing as how cancer has deprived me of any quality for the past 18 months since I was diagnosed. I think everybody should try the aromatase inhibitors to see what you can tolerate - it's a very personal decision. Good luck and God Bless!

      over 6 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Sheliblue118---I can recommend to you what I was given to me by my Primary Care doctor--- Estrace cream used vaginally in a low dose. I had a bladder infection, which she said was caused by menopause and pelvic prolapse, and that oncologists have approved local use of Estrace even in breast cancer patients at a low dose to relieve atrophy symptoms. It makes a BIG DIFFERENCE.

      over 6 years ago
    • Raeyye's Avatar
      Raeyye

      I tryed Arimidex , kicked all night , TV moved on the wall , felt terrible. I won't take anymore Als. I got a new a oncologist who agrees. 80 % it won't come back. I have bone on bone knees. So now 11 months out and I have Post Mastectomy Pain Syndrom and Trunkle Lymphodema. 7 months of 3 Lymphodema Specilists for PT , 2 months of Accupunture , and last month the pain Dr. Tried GABA , Cymbalta and Lyrica. All had bad side effects. My underarms and back are swollen , itchy , burning. I use compression Lymphatic massage and stretches everyday. I keep getting worst. Don't know what's next. I'm almost 72 and I can't do anything anymore , like play bridge , yoga , paint , clean my house , cook , I'm a painfull wreck and if the cancer comes back , no treatment. I just wish I died instead of having chronic pain. I take Tylanol , Valium , CBD oil . Ambium and Xanax to sleep , can't lay on my back or sides , it hurts and wakes me. I was going to try Calmare scrambler for nerve pain , now I think it won't work on Lymphodema. I'm researching going to CA or somewhere to get some help.

      over 6 years ago
    • sheliblue118's Avatar
      sheliblue118

      Thank you, BarbarainBham - my ONC would freak if I asked to have a prescription for that! Having estrogen induced breast cancer, I wouldn't even chance using that - HOWEVER, I have found that pure, virgin, unprocessed Coconut oil not only HEALS the lesions, but keeps everything nice and supple and relieves itching and pain!

      Raeyye - I don't blame you - it's been 18 months of nonstop pain and rashes and not sleeping and exhaustion, and you have tried WAY more things than I have! I am SO SICK AND TIRED OF DR.S AND THEIR INCOMPENTENCE! I had 52 very healthy years where I did not even get a runny nose - cancer comes along and I have medical ISSUES out the WAZZOO - I, too, want to move to CA - maybe Colorado. Best of luck and God Bless!

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      Raeyye and Sheli......are your symptoms from cancer or side effects?
      UGH...

      over 6 years ago
    • sheliblue118's Avatar
      sheliblue118

      BARRYBOOMER - all side effects from double mastectomy, chemo, radiation, second surgery for final implants, and also side effects from the anti-estrogen meds they want me to take that causes extreme joint pain, paintful trigger finger in two fingers, exhaustion, memory issues, rashes all over, lesions, etc. I was truly extremely healthy for 52 years until they started their $120,000 treatments on me - unbelievable.

      over 6 years ago
    • Raeyye's Avatar
      Raeyye

      I had a small tumor , double mastectomy , no reconstruction. No treatment. I suffer worse each day for 11 months. It's Post Mastectomy Pain Syndrome and Trunkel Lymphodema. I'm trying everything. Going to spend the summer in Carlsbad CA with my son. Looking into treatment there. Still researching . This is some thin I found , besides the Calmare nerve scrambler.
      . http://www.cancerlynx.com/truncal.php#TOC

      over 6 years ago
    • barryboomer's Avatar
      barryboomer

      SO the problems are from the Surgery and side effects?
      WOW

      over 6 years ago
    • Sharlie's Avatar
      Sharlie

      I have been reading through these comments with much interest...even though I'm late to the party. My initial experience was very similar Raeyye. I had a bilateral mastectomy in April 2015 with no reconstruction. No radiation, no chemo, no lymph node involvement. Took Tamoxifen for 3 months and had horrible side effects. I quit taking it in early August and informed my oncologist. He wanted me to give Femara a try, but I decided against it as I already have joint pain throughout my entire body. While my oncologist wished I would take the drug, he supported my decision to go without any hormone blockers. I am very sorry for the pain you were going through Raeyye and I do hope you're feeling better. I hope the new oncologist has been able to provide some help and hope to you. Thank you for sharing your story.

      over 5 years ago
    • Mrssunbum's Avatar
      Mrssunbum

      I am chiming in late, too.
      Stage 1, 1.3 cm tumor, clear marigines, no lymph involvement. ER+ Pr+ Her2+. Double mastectomy. Chemo and herceptio. When first diagnosed , I was told with that regime , family history, etc, my chances of reoccourance was 5%. When the time came to suggest AIs, they said it would cut my odds in half. Half of 5%?? To me, that 2.5% chance wasn't worth the side effects. Both oncologists agreed, but said they " had to make sure I was informed" . I am 58, post menopausal . It's only been 2 yrs since dx. Fingers crossed that my choice works for me. Hope everyone finds what works for them!

      over 5 years ago
    • Toyota59's Avatar
      Toyota59

      I had mastectomy last march 16,2016 and had an implant reconstruction,,,after diagnosed with grade2 invasive carcinoma,oestrogen receptor positive,8/8. I had sentinel node biopsy and luckily its clear. After the op they found out the tumor size is 4cm and its bigger than the mri result w/c was 3cm,,Now the dr request me to talk to my oncology about radiation and chemo but i think I won't go for it,,I really don't like to suffer with the side effect. IM 63 ,,,and now waiting for the next op for the removal of the expander to replace it with the implant on may. Im still thinking if i will take those hormone therapy pill,,,worried again with the bad side effect.

      over 5 years ago
    • ld_105's Avatar
      ld_105

      If you need radiation my understanding is that you should do it before getting the implant.
      You did not mention the oncotype test which is done to determine if you may need chemo. If you don't trust your dr's find someone you do trust.

      over 5 years ago
    • ld_105's Avatar
      ld_105

      BTW I am three years out and taking Anastrozole. My oncologist recently said that new studies may indicate there may be no need to do 10 years. It's all good and worth the aches and pains but of course it depends on your circumstances.

      over 5 years ago
    • Elephant's Avatar
      Elephant

      After my initial diagnosis, I stayed on Tamoxifen for 6-8 mons. That was 2012. Sm.lesion, stage 1, no lymph node involvement but hormone +. I had been on H.R.T. following surgery for Crohn's many years before-1987. The surgery involved taking my uterus, and one ovary. Plus bowel resection. I digress -brain fog from anti-hormone treatment. I chose to come off Tamoxifen as I had every side effect known. My chances of recurrence were put at 20% or less. I rolled the dice.
      6-8 months ago on PET scan, I showed positive sm. lesions on my upper lung. 3 opinions felt they were breast cancer metastatic lesions. Too sm. to biopsy and close to blood vessels.

      Since Nov.30/2015 I have been on Anastrozole. Yesterday I had a repeat CT. Lung lesions have gone. My side effects from this drug-physical not even worth mentioning. Mental- bad bad brain fog, extreme fatigue, feel like I have ADD. Very difficult to stay on task.
      I wish there was a synthetic non hormonal Estrogen. I do need my Estrogen. I functioned soo much better when off anti-Estrogen meds.
      I do not see my Oncologist until June 1st. Til then I am researching alternative therapy's. Although I know he will insist on my remaining on Anastrozole.

      I am super sensitive to many medications. However if I must remain on it, it is certainly better than the alternative.
      Each individual reacts differently. Friends of mine have been on anti-Estrogen with no side effects to speak of.
      Wishing you well, only you can decide what is best for you. hugs, Elephant.

      over 5 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      I didn't take them and have had no recurrence. However, its best to ask your doctor due to your personal testing he will do.

      almost 5 years ago
    • julianne6055's Avatar
      julianne6055

      AMYOTROPHIC LATERAL SCLEROSIS (ALS)

      I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2012, my symptoms started out with a "foot drop" on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2015 i started on NewLife Herbal Clinic ALS Herbal formula treatment, i read alot of positive reviews on their success rate with the ALS Herbal treatment and i immediately started on the treatment. Just 11 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than i'd thought i could ever be again, visit NewLife Herbal Clinic official website www. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com. The fatigue and general muscle weakness had also declined, this treatment is nothing less of a miracle!

      Julianne Regan

      over 4 years ago
    • julianne6055's Avatar
      julianne6055

      AMYOTROPHIC LATERAL SCLEROSIS (ALS)

      I was diagnosed of ALS (amyotrophic lateral sclerosis) in summer of 2012, my symptoms started out with a "foot drop" on my left foot, from there my left leg lost all muscle tone followed by slurred speech and inability to eat without getting choked, strangled, and coughing. My neurologist prescribed me some medications to help my symptoms but the medications did no good and their side effects were too severe. In 2015 i started on NewLife Herbal Clinic ALS Herbal formula treatment, i read alot of positive reviews on their success rate with the ALS Herbal treatment and i immediately started on the treatment. Just 11 weeks into the ALS Herbal formula treatment I had great improvements with my coordination, speech, breathing and muscle movements. I have basically gone stronger than i'd thought i could ever be again, visit NewLife Herbal Clinic official website www. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com. The fatigue and general muscle weakness had also declined, this treatment is nothing less of a miracle!

      Julianne Regan

      over 4 years ago
    • jem1332's Avatar
      jem1332

      In September, I will reach my 5 year on Arimidex. Also, will be 70 in July, my BC was stage 1, clear margins, no lymph nodes. I did not have any testing to verify how aggressive my cancer was (something I regret). I did radiation after my surgery. Just had my 3-D mammogram which was clear. I had my bone density test and I'm waiting for the results. I plan to stop taking Arimidex in September, after my visit with onc. How are you doing?

      about 4 years ago
    • Michellegreger's Avatar
      Michellegreger

      My mother was diagnosed with ALS in May 2016. Her doctor put her on riluzole, letting her know there was no cure but the medication might provide her a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. My mother, being 73 at the time, fell into a category of what they call "fast progression" (older female). Her arms weakened first, then her hands, her mouth, and throat, and finally her lungs. Throughout her two-and-a-half-year ordeal, she was able to walk with assistance nothing was really working to help her condition.I took her off the riluzole (with the doctor’s knowledge) and started her on amyotrophic lateral sclerosis herbal formula i ordered from Health Herbal Clinic, her symptoms totally declined over a 5 weeks use of the ALS disease natural herbal formula. She's now almost 75 and doing very well, the disease is totally reversed!! Visit there website www. healthherbalclinic. net

      about 4 years ago
    • joan312's Avatar
      joan312

      ALL THANKS TO DR ODIA WITH HIS HERBAL ROOT AND HERBS AM COMPLETELY CURED FROM FIBROID
      I can’t believe this. A great testimony that i must share to all fibroid patient in the world. i never believed that their could be any complete cure for fibroid with out going for surgery ,i saw people’s testimony on internet on how Dr ODIA prepare herbal root and herbs that shrink there fibroid naturally. i had to try it too i contacted him on: [email redacted]. and him told me how to get his herbal medicine, and you can,t believe that in just few weeks i started using it all my pains stop gradually . Right now i want to tell you all that i just give birth to a baby boy last month,and on till now' i have not had any pain, and i just went for text last week and the doctor confirmed that there is no trace of any fibroid in my system. after 8 year of suffering from fibroid am now free, Glory be to God for leading me to this great Dr ODIA I am so happy as i am sharing this testimony. My advice to you all who thinks that their is no herbal cure for fibroid that is Not true ,just contact him and get cure his email [email redacted] and you will be free and free forever, Try it and you will not regret it because it truly works. i hope to see your testimony soon.

      over 3 years ago
    • joan312's Avatar
      joan312

      ALL THANKS TO DR ODIA WITH HIS HERBAL ROOT AND HERBS AM COMPLETELY CURED FROM FIBROID
      I can’t believe this. A great testimony that i must share to all fibroid patient in the world. i never believed that their could be any complete cure for fibroid with out going for surgery ,i saw people’s testimony on internet on how Dr ODIA prepare herbal root and herbs that shrink there fibroid naturally. i had to try it too i contacted him on: [email redacted]. and him told me how to get his herbal medicine, and you can,t believe that in just few weeks i started using it all my pains stop gradually . Right now i want to tell you all that i just give birth to a baby boy last month,and on till now' i have not had any pain, and i just went for text last week and the doctor confirmed that there is no trace of any fibroid in my system. after 8 year of suffering from fibroid am now free, Glory be to God for leading me to this great Dr ODIA I am so happy as i am sharing this testimony. My advice to you all who thinks that their is no herbal cure for fibroid that is Not true ,just contact him and get cure his email [email redacted] and you will be free and free forever, Try it and you will not regret it because it truly works. i hope to see your testimony soon.

      over 3 years ago
    • Ellensmith's Avatar
      Ellensmith

      I am so grateful to Dr.Abe for curing me completely from COPD DISEASE. I was told by my medical doctor that i have COPD Few years ago, and ever since i have been taking different kinds of medication and yet no improvement until i saw testimonies of Dr.Abe about how he has been curing people from different kinds of diseases Although i was skeptical about contacting him, but i also knew the importance of herbal medicine, then i made up my mind and contacted him we talked on phone and he prepared and gave me the medicine which i took according to his instructions. Now I’m so happy I’m 100% free from COPD. My heart is so filled with joy, thank you so much Dr.Abe. If you are reading this and you have COPD or any other disease you can contact him on this Email address: [email redacted] or WhatsApp or call him on this number[phone number redacted]5.
      He cures all manner of diseases like

      Cancer
      HIV
      Hepatitis A AND B
      Diabetic.
      Herpes
      Syphilis
      Human Papilloma Virus(HPV)
      Cerebtospinal Meingtitis
      Chagas Disease
      Alzheimers Disease
      Schizophrenia.

      What ever the disease may be just contact him and he will surly cure you without having any side effect.

      over 3 years ago
    • Creese's Avatar
      Creese

      I am a cancer survivor because of CBD. I had breast cancer (stage 4) and I don't know how will I be cured but this friend of mine told me to try the CBD, at first I did not believe because my doctor doesn't allow me to take some cannabis as a medicine and this is a fake medicinal treatment. But I read this https://www.worldwide-marijuana-seeds.com/blogs/marijuana-news/cannabis-as-medicine that it really helps others that's why I tried it but I did not tell my doctor about it. So I take this for 11 months and it really helps me a lot. I know that others won't believe me but trust me it really does.

      over 3 years ago

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