anyone decline hormone therapy after surgery and radiation?

cissyewert
cissyewert Member Posts: 1
in Breast Cancer #1

I had a lumpectomy in November for stage 1 (.8cm) ILC with sentinel node biopsy (no spread). That was followed by 21 sessions of whole breast and targeted radiation. My Onc score was a 6 so no chemo needed. My tumor was HR+, HER-. My oncologist told me my chance of recurrence with the hormone therapy is 3% and doubles to 6% without taking the meds. I am seriously considering skipping the meds since my odds seem very low and hearing all the negative experiences with the side effects that come with these medications. Anyone else out there decline the hormone blockers and looking for advice on the topic?

Comments

  • jolen53
    jolen53 CSN Member Posts: 3 Member
    #2

    I’m considering not doing hormone blockers as well- I’m stage 1, HER2+, invasive ductal carcinoma, no lymph nodes involved. After just 3 infusions my tumor is barely detectable upon feeling for it. I just am really concerned about the side effects of the hormone blockers and want to live life and not be sick all the time

  • Ilove2watchBBand1945
    Ilove2watchBBand1945 CSN Member Posts: 2 Member
    #3

    yes, I am in same boat as above, Onca type very low at 3%. Does the hormone blockers block reoccurrence just in breast or whole body.

  • Ilove2watchBBand1945
    Ilove2watchBBand1945 CSN Member Posts: 2 Member
    #4
  • LifeInBloom100
    LifeInBloom100 CSN Member Posts: 60 Member
    #5

    Oo…. this is SUCH an individual decision to make.

    I'm sure it will feel empowering to have others chime in with "you'll probably never deal with this again with your personal risk assessment via oncotype and no node involvement (and that is LIKELY the case, statistically-YAY!), even if you don't take hormone therapy. "

    And I am in NO way steering you in either direction. BUT - I'll offer my own perspective here, ONLY since you're seeking thoughts:

    1. You ARE at super low-risk for a recurrence - locally and metastatically, and super fortunate not to have had lymph node involvement or detection of any cancer cells there.
    2. Your oncotype test results are stellar - it accounts for the rate / grade of progression of your particular tumor type, among other markers I can't recall and am not qualified to state accurately.

    At the same time, there are other factors that CAN impact your probability to live cancer-free (from breast cancer) from here on in:

    Lifestyle (inlcuding how stressful and you manage stress ——> inflammation), diet (watch that alcohol intake or eliminate it fully if possible; there are studies now that state it can be a causal, not just correlative, preventable factor), and EXERCISE.

    And then the factors of things beyond our control - environmental pollution, what's in our soil, our clothing, all that hoopla.

    I am coming from a place of having had ONE - the sentinel - lymph. node involved, four additional ones removed were clear. Stage 1B/2A (depending upon which measurement used) IDC, and having had a double mastectomy, radiation to the left chest, and receiving lupron injectins because I was premonopausal, and I DO take Anastrozole. And my oncotype score was a bit higher than both of you commenting with your results (one tumor was at 19, the other 21 - both are still at the lower risk level of metastatic recurrence over 9 years):

    Believe me —- I was kicking and screaming about taking the aromatase inhibitor - ALSO because of the adverse effects many were detailing her eon the boards and elsewhere online.

    EVERY BODY is different, including how we respond. I've had lupron injections for a year and 7 months now, and have been on the AI for a year. I DO have some mild joint discomfort. I DID have some night sweats (Ithey hve significantly lessened) and my sleep was initially disrupted. The depletion of estrogen does affect your skin - and horribly vain as it sounds, that (and bone density loss) were and are my two main concerns.

    I think I made the personal decision to follow doctors' best recommendation - to throw EVERYTHING at this for the best chance of never dealing with this again. The extra insurance above what I can do - exercise, eat healthfully, et al (the stress - I'll probably never be abke to eliminate the level of it) - makes the light at the end of the 5-year tunnel I'll be on these drugs tolerable. I meanwhile take high-calcium Osteobalance by Pure Encapsulations to help my bones, I exercise, I think about a life beyond cancer, and can say confidentally, a year and a half in: THIS IS MANAGEABLE for ME. I've ACCEPTED the physical impact, and it's NOT THE END of the world.

    That said - It does NOT mean you don;'t have your best interest at heart if you opt NOT to take the advice (of that's what it is) from your doctors and go on the AI. It means that you've weighed the information given you, and you know what you will commit to to give yourself the best chance of being a life-long survivor. There are people whose stories al over the internet who detail going without and doing well for years! And stories of those who have forgone and been less fortunate.

    I will end with this though - your prognosis seems to be among the best it can be, if you've been touched by breast cancer at all.

    I'm so grateful for that, and wish you a healthy, happy life, always.

  • LifeInBloom100
    LifeInBloom100 CSN Member Posts: 60 Member
    #6
    https://csn.cancer.org/discussion/comment/1722763#Comment_1722763

    I believe the Aromatase Inhibitor lowers the risk of metastatic recurrence, so… whole body.

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