Rejecting hormone therapy

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  • VioletKali
    VioletKali Member Posts: 243
    edited December 2021

    My personal choices, preferences, and decisions based on QOL are very much a *me* thought process. I don't base my decisions on QOL on others, or how they choose to live and treat breast cancer. I would not choose to live a certain way, but that is ME. I have no pity for anyone, I just don't want that for *me*.

    YOU do YOU is my motto.

    Example: chemo put me into menopause immediately with the first round, and by four rounds in I had two blood transfusions and decided that it wasn't worth it. I IMMEDIATELY began an AI and OS.

    I am a NURSE, and was unable to type and even insert an intravenous line. I developed trigger finger and was unable to make a fist. This would be just fine if I could sit on my butt all day and do nothing for the rest of my life, but I couldn't. I didn't care how long the rest of my life would be, I just wasn't going to live it like that.

    I've been treated for bipolar depression since I was 16, and have been stable ever since. I've tried to go off medications, and it just did not work, I was unable to function. Tamoxifen is not an option because I take a medication that is very good for me and it interacts with tamoxifen.

    I took Fareston, toremifene, without any difficulty, but when my oncologist left the practice and moved no other oncologist would prescribe it for me so I decided that I no longer needed the services of an oncologist and I have been doing fine for the past 5 years.

    My Internist orders my yearly MRI for my breasts, I also have tumor markers drawn for good measure.

    Every year I have a full Body MRI scan in Florida, because they have a cheap service, because I need to know early if I have brain Mets because I make life and death type decisions as a Nurse.

    IF something pops up I will DEMAND Fareston or buy it online if needed. In other countries Fareston is used for Metastasis over AI, and it has a better side effect profile.


  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited December 2021

    Outcome Without Adjuvant Systemic Treatment in Stage I ER+/HER2− Breast Cancer Patients

    • Patients with early-stage ER-positive HER2-negative breast cancer who received no adjuvant systemic therapy (AST) had a 2.5% lower 8-year distant metastasis–free interval compared with matched patients who only received endocrine therapy (ET). Slightly more locoregional recurrences and contralateral breast cancers at 8 years were observed in patients who received no AST compared with those who only received ET.
    • The benefits and side effects of ET should be considered for each patient.

    Update: This is the link but it is a members only page. I included a link to the abstract a few messages down.

    https://www.practiceupdate.com/content/outcome-without-adjuvant-systemic-treatment-in-stage-i-erher2-breast-cancer-patients/128195

  • ThreeTree
    ThreeTree Member Posts: 709
    edited December 2021

    Pi-Xi - Just FYI, the Annals of Oncology link goes to an error page, and the Practiceupdate link goes to a members only page.

  • PamEP
    PamEP Member Posts: 82
    edited December 2021

    Pi-Xi: Is this the link referred to in the Annals of Oncology?

    "Benefits and Adverse Effects of Endocrine Therapy" https://www.annalsofoncology.org/article/S0923-7534(19)39688-7/fulltext

    For a list and links to Annals of Oncology articles on the benefits of adjuvant endocrine therapy: https://www.annalsofoncology.org/action/doSearch?text1=benefits+of+endocrine+adjuvant+therapy&field1=AllField


  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited December 2021

    Strange that the link did not post properly.

    Outcome without any adjuvant systemic treatment in stage I ER+/HER2- breast cancer patients included in the MINDACT trial

    https://www.annalsofoncology.org/article/S0923-7534(21)04829-8/fulltext

    I was happy to post the information that so many ask for…what happens if you choose to forgo endocrine therapy.

  • ThreeTree
    ThreeTree Member Posts: 709
    edited December 2021

    Pi-Xi - Thanks for this. It came through just fine. It's too bad they only looked at stage I disease. It would be interesting to see what goes on with the later stages.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2021

    For those of you taking letrozole (or the other AIs for that matter) have you had your cholesterol and a1c rise? I posted a thread asking, but I thought I'd ask here too. My a1c is 5.6 was 5.1 before BC and seemed to creep up since starting letrozole. I have taken letrozole for 4 years and tamoxifen prior to that for 3. Also my cholesterol is up as well. I used to always have low cholesterol now TC is 233 and LDL is 116. I do eat sweets so that's gonna stop mostly, but was never an issue before. I think it's the letrozole so was wondering if anyone else taking this nightmare has had these problems? Thanks


  • muska
    muska Member Posts: 1,195
    edited December 2021

    Nancy, your A1c is still in the normal range and you know what you need to do in order to keep it there.

    AIs may have some impact but I wouldn’t forget we are not getting younger. Your pre-cancer baseline was from some seven or eight years ago, right? You are not saying how old you are but probably not in your 30s or 40s anymore? As we get older A1C and the rest don’t get better

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2021

    lol true I’m no spring chicken anymore. I am 59. Still I feel letrozole is contributing. My cholesterol rose 40 points between this year and last and it did it (rose 40 points) before a few years prior to this rise. Both significant rises I have been on letrozol

  • gb2115
    gb2115 Member Posts: 1,894
    edited December 2021

    Nancy, I agree with Muska, that's a normal A1c. I wouldn't sweat fluctuations within a normal range.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2021

    thank you. My dr is not concerned about a1c. He said they worry about prediabetes at 6 and over with 6.5 diabetic. I'm really moreconcerned with my cholesterol

  • muska
    muska Member Posts: 1,195
    edited December 2021

    high cholesterol is often driven by genetics and some are more predisposed. Statins do a great job lowering it. Btw, research shows they lower risks of some cancers. https://www.cancer.gov/about-cancer/causes-prevention/risk/statins-fact-sheet

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2021

    thank you muska. Yes my husband is on Lipitor and has no problem with it. Interesting that they can lower the risk of some cancers. I have been on hormonal therapy for 7 years (3 years tamoxifen and 4 femara). I did ask my oncologist about temporarily stopping letrozole until my next labs just to see, but maybe a bad idea. I don't know - first I was told hormonal therapy for 10 years then 7, then 10 again. Now my new oncologist wants to run a test to see if I will even benefit from an additional 3 years.

    Nancy

  • muska
    muska Member Posts: 1,195
    edited December 2021

    Hi Nancy, do you know what test your oncologist wants to run?

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2021

    I don't know the name of the test unfortunately. I thought she said this is new, but the test almost sounds like the Onco DX test since that test was never run on me.


  • Margun
    Margun Member Posts: 419
    edited December 2021

    I am taking letrozole for 2 years. Before bc I had no health issues. Now I have colesterol and osteoporosis. Besides vitamin D and calcium my BS prescribed me a medication to fight osteoporosis. I asked her how long I need to take letrozole. Her answer was that science changes on that but the minimum is 5 years. I am not sure if she said to don’t discourage me and God willing I reach 5 yers without recurrence, she will evaluate the situation. I heart my back a few weeks ago. Before the situation improved within a weak. But until now it hearts. If my BS did not do X-ray to rule out fracture. I would think I broke a bone.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2021

    Hey Margun,

    I'm sorry you've been having so many issues. Has your doctor tried you on other AIs/other brands? Failing that, tamoxifen is also an option for menopausal women who do not tolerate AI. Don't put on a brave face with your doc - it's their job to help you with this but it's easy for them to skip it if we don't insist on the severity of the side effects.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2021

    Muska it is the BCI (Breast Cancer Index) test they are running.

    Margun I agree with Salamandra about either switching to another AI or trying tamoxifen. My oncologist told me that letrozole is the least likely (but still can) AI to cause joint pain. I really haven't had joint pain on it, but I still believe it's raised my cholesterol.

    Nancy

  • KIDI919
    KIDI919 Member Posts: 425
    edited January 2022

    My cholesterol was up but not horrible. Dr suggested fish which I do not like and less red meat. We buy part of a cow every year so we do eat too much. After reading everyone's comments maybe I will try the Letrozole in am. I have to take a thyroid pill in am and wait an hour before eating so I could try the AL at lunch. I sleep ok but the leg cramps make me take forever to fall asleep.

  • lenaAZ
    lenaAZ Member Posts: 12
    edited March 2022

    How do you know which tumor marker tests to ask for? I was treated (chemo, surgery, radiation) by a supposedly top facility, but they offer zero survivorship plan help unless I agree to do endocrine with them. I probably won't be doing endocrine, but even if I do, I am angry that survivorship support is "conditional" on following their plan to the letter. My primary care doctor does not want the responsibility. So it's on me to monitor my own follow-up care. I am at a loss about how even to research it.

    Thanks for your posts.

  • VioletKali
    VioletKali Member Posts: 243
    edited March 2022

    My PCP Is ordering anything I ask for. She understands that I chose not to take hormonal therapy, she supports my journey. I didn't find another oncologist because my primary care provider said she would order anything I needed, and then if something were to pop up then I can see an oncologist if I need it.

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