• mytoby's Avatar

    mytoby wrote on AKmom's wall

    Hi: I have the same cancer as you, stage 11b, had surgery, mastectomy waiting to see what the next step will be. Mine is ER/PR positive, but HER2 neg. How are you doing and how are you feeling? are you having side effects? any pain?

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    mytoby asked a questionBreast Cancer

    Stage 3a breast cancer, treatment options

    103 answers
    • ChicagoSandy's Avatar

      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

      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.

      7 days ago
    • mytoby's Avatar

      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 12 hours ago
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  • GregP_WN's Avatar

    GregP_WN wrote on mytoby's wall

    Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started with the help you need right now.


    There are also subtypes listed on this page to narrow down the type of cancer to match your dx. Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the database to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall. Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also.

    Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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  • mytoby's Avatar

    mytoby shared an experience

    Procedure or Surgery (Mastectomy): Recently had a mastectomy last week. I have 2 drains, getting used to the routine, the drains, and pain, soreness, and numbness.

    • beachbum5817's Avatar

      I'm sure you are glad to have the surgery behind you. Take lots of time to relax and rest. Take care.

      about 1 month ago
    • ChicagoSandy's Avatar

      Glad you have the surgery behind you and they were able to remove the tumor first. And since you had mastectomy, you won't need radiation unless the tumor was close to the collarbone or chest wall. Remember to have a heart-to-heart with your oncologist about why they recommend chemo--I explained it in response to your question, but your doctors have much more experience and can explain it with greater authority. Tell them what you prefer to do--they will be able to tell you what is (such as diet) and isn't wise, and the best way to integrate it with first your chemo and then your endocrine therapy (at 69, it'll be an aromatase inhibitor like letrozole, anastrozole or exemestane--which after menopause are much more effective than Tamoxifen). Level with them about not just your fears (which they will probably be able to ease) but any other medical conditions you already have which might (theoretically) make the chemo more harmful than beneficial. Even then, there are workarounds to make chemo easier on your body.

      Demand they run the numbers by you. There is a doctors-only site called Adjuvant Online, and another you can use called Cancermath.net. They are both for Luminal A breast cancers (the type you & I had). You enter your data: age at diagnosis, size of tumor, grade (if you know it--it should be in the path report), and number of lymph nodes involved. You will get a graph that tells you the chance of recurrence between doing nothing, having endocrine therapy only, and endocrine therapy plus chemo. In my case, having endocrine therapy is estimated to give me another couple of years of disease-free survival over doing nothing; but adding chemo would give me about four extra months at most.

      These sites are free to use, but they are still "guesstimates" because they depend only on the info you give them--they don't actually examine the tumor tissue itself. Oncotype DX assays 21 genes in the tumor tissue sample, which is why it's so expensive. But most insurance and Medicare PartB covers it at least 80%. (If you have a PartB supplement or Medicare Advantage, it should cover the other 20% so you will not be out of pocket).

      My tumor was Grade 2, 1.3cm, and node-negative--I was diagnosed at 64. It hadn't shown up on the prior year's mammogram. But going from invisible to 1.3cm in a year (actually 16 months) is a lot slower-growing than going from invisible to 4.3cm in only 8 months!

      I assume you're in the U.S.? At 69, you're on Medicare Part A & B, right? Even if you don't have Part B & D supplements or Advantage, you'd still be on the hook for no more than 20% of the cost of chemo--which since it is done at a facility is considered a "service" under Part B and not a "drug" under Part D. If you have a Part B supplement or Medicare Advantage plan, you will not pay anything out of pocket. From now till Dec. 7, you can change plans or sign up for one if you haven't already. Your Part B premium is strictly income-based--so if, as you said, your husband is not working, your premium would be quite low. There is also assistance available from the American Cancer Society as well as Federal assistance to help pay for your treatments & drugs if your income is low.

      Be thankful you're 69 and not 59! Uncle Sam will be picking up the lion's share of the tab at our age. (I had good private insurance that covered the first 4 months of my treatment 100%; and when I turned 65 Medicare Part B and Part B & D supplements took over. I still haven't paid a penny for anything other than parking, gas, and the co-pays on my prescriptions. (My more expensive co-pays are for meds that have nothing to do with cancer; my co-pay for letrozole is nine bucks a month until I climb out of the "donut hole" Part D coverage gap, and then only five bucks a month).

      I had an OncotypeDX test done because my tumor was in the "gray area" (Stage IA, Grade 2, Luminal A) between chemo vs. no chemo. It came back with a score of 16, which at our age is low-risk of recurrence whether or not chemo is given. But as I said earlier, your tumor was large enough and grew fast enough that they do not want to leave any stone unturned. They will not order an OncotypeDX on a tumor your size because they are certain the score would come back >25, making it "high risk" for recurrence without chemo.

      People like to say when they're diagnosed that they want to do everything they *can;* but the better objective is to do everything they *should.* Not everything "possible" but everything "necessary." With a tumor the size of yours, the "should" and the "necessary" of treatment needs to be of the "throw-everything-in-the-arsenal at it" variety. If you treat it aggressively and it still recurs, you will know it was the nature of the tumor itself and not anything you did or didn't do. If you choose to go only the endocrine + "natural" (especially the "natural only") route and it recurs, you will be second-guessing and emotionally beating yourself up with the "coulda, shoulda" refrain.

      28 days ago
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