Hormone Therapy - 10 years?

Double Whammy
Double Whammy Member Posts: 2,832 Member
in Breast Cancer #1

I really thought I'd made up my mind that I would quit at 5 years in spite of the "latest research".   I visited the oncologist today and said, I'll be at 5 years in February, I have enough pills on this prescription to last me through December, how about if I quit end of December?  I was given the speech for 10 years and told that while my bc was early stage (1b), grade 2, that because my oncotype score had been in the high risk area, they would really recommend 10 years (I'm on Tamoxifen) and since I'm tolerating it well (I am) and I don't have  the concern about an AI hastening osteoporosis, I really should consider continuing.  (In fact, my bone density improved on Tamoxifen)  I said, ok for now, but we'll revisit this every 6 months.  For now, I'll do 6 more months and then we'll talk about it again. 

I'm leaning toward staying on because I personally know 3 early stage recurrences, 2 of whom could not tolerate the AIs so didn't take them very long and both recurred, one locally and one distant.  The third friend (a very good friend) took AIs for 7 years, and then recurred with very advanced mets some 3 years after stopping them.  My logic (today) is that if I'm tolerating the drug, that the risk of recurrence because of my oncotype score is not one I'm wanting to take, but again, I will revisit this at my next 6 month visit.  My other reason (today - this could all change tomorrow) is that I had a callback on my mammogram in July which turned out to be "nothing", but I'm not sure I fully believe it.  I will have a breast MRI in January (routine for me) and if that's all good, then I can decide to let go and believe it.

In the meantime, I'll  still be taking Tamoxifen (much to my dismay) beyond 5 years, how much beyond 5 years is unknown.  Afterall, 5 years was the standard of care until a couple of years ago . . The older I get, the more I realize that our physicians have a lot more knowledge than me, but it really is a crap shoot, isn't it?

What are your thoughts?

Suzanne

Comments

  • aisling8
    aisling8 Member Posts: 1,627 Member
    #2
    I was taken off after 5 years

    Hi Suzanne,

    It's a tough decision. A part of me wanted to remain on Arimidex because I tolerated it well, and though she left the decision to me, my oncologist strongly suggested I go off because of my osteoporosis. She said there were no studies to speak to the benefits of remaining on it another five years and that osteoporosis was a rather big side effect. I agree, it is, and since I refuse to take biophosphonates, I chose going off. It is a lot like jumping into the deep end not knowing how to swim. I feel, I don't know, unprotected. But then, broken bones are scary, too.

    So I hear you. And agree with your wait and see every six months attitude. If my bone density were better, I would have stayed on the Arimidex.

    Just my thoughts and two cents' worth.

    xoxo

    Victoria

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #3
    aisling8 said:

    I was taken off after 5 years

    Hi Suzanne,

    It's a tough decision. A part of me wanted to remain on Arimidex because I tolerated it well, and though she left the decision to me, my oncologist strongly suggested I go off because of my osteoporosis. She said there were no studies to speak to the benefits of remaining on it another five years and that osteoporosis was a rather big side effect. I agree, it is, and since I refuse to take biophosphonates, I chose going off. It is a lot like jumping into the deep end not knowing how to swim. I feel, I don't know, unprotected. But then, broken bones are scary, too.

    So I hear you. And agree with your wait and see every six months attitude. If my bone density were better, I would have stayed on the Arimidex.

    Just my thoughts and two cents' worth.

    xoxo

    Victoria

    I'm in it for 10 years

    Suzanne,

    I'm premenopausal, and have been on Tamoxifen for nearly 6 years now.  I'm in it for 10 years.

    For myself, the biggest reason is that I trust my oncologist -- he's a huge data geek, very knowledgeable about the latest research, and is loathe to recommend anything, anytime, unless there's strong data to back it up.  He feels strongly that there's now good data to back up my continuing Tamoxifen for 10 years.  

    Of course, for each patient, he considers her own personal situation -- in my case, my side effects from Tamoxifen are minimal, I'm not at any especially high risk for blood clots or endometrial cancer, and I'm faithful about my annual pelvic exams.  So 4 more years of Tamoxifen for me!

    I have another, definitely less scientific reason: As most of you know, I had a prophylactic bilateral mastectomy back in January.  Even though it was prophylactic, I was very interested in the post-surgery pathology, and really expected them to find maybe a little bit of DCIS somewhere, something.  After all, I'd had breast cancer in BOTH breasts 6 years ago.

    Nothing.  Zip.  Nada.  Both breasts completely cancer-free.  Is that because I've been faithfully taking my Tamoxifen for the past 6 years?  No one can say for sure, but my gut feeling is that it's doing its job, and I'm committed to letting it keep doing its job.

    Traci

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #4
    10 years for me

    I too just a few days ago got to 5 years on Tamoxifen and had a conversation with my oncologist.  He felt very strongly that I needed to remain on it for another 5 years.  I has expected he would say this but thought that the conversation was worthwhile - and I was hoping he would let me off for a while.  I tolerate it well and so have no reason to want to be off it other than I just don't want to think about it everytime I take a pill in the evening.  Still, my cancer was agressive (grade 3), very strongly ER/PR positive (95%/100%), stage 2 and there was small spread to my nodes so I know I need to do everything I can to keep it from recurring.  My bone density has remained stable over the 5 years of Tamoxifen and I have experienced hyperplasia of the uterus lining, however, had a biopsy earlier this year and it came back totally fine so I didn't need to get a hysterectomy.  I was happy about that, even though at 46 I'm not going to be having any babies.  I guess I'd just rather remain more "intact" than not.

    Clementine

  • cati0314
    cati0314 Member Posts: 203
    #5
    5 or 10 years?

    My oncologist just took me off Arimidex after slightly more than 5 years.  He is not my original oncologist.  He felt that since I was almost triple negative and have osteoporosis that there was no benefit to me to continue.  I am ER- just barely PR+ and HER2-  A breast surgeon I went to for a consultation on what I thought was a lump also said I should come off of it.  That my PR , positive status was barely there.  So after much concern on my part I listened to the doctors.  Some of you seem to feel that the AI's also help if you have a high chance of recurrence.  That I had not heard.  I was only aware that it could help with hormone positive cancers.  My cancer was agressive at a grade 3.  Hard to feel that you may be up a stream without a paddle but the doctor's speak from knowledge where I speak from fear of recurrence.

  • button2
    button2 Member Posts: 421
    #6
    Hi Suzanne

    I've been on tamoxifen for three years now. At first, I hated it and the side effects, but now I have gotten used to it. I was told I'd need it for 5 years and now I'm actually getting scared that the time will pass too quickly. I also personally know two women who got recurrences after refusing to continue on the drug. My oncologist says it is like continuing chemotherapy, so I don't want to stop! I am very careful to have my uterine thickness measured every 6 months by my ob/gyn and only a change in that would make me quit tamoxifen. I'm hoping my oncologist will let me stay on it for the 10 years now recommended. Let us know what you decide to do and good luck with your MRI in January.... Hugs, Anna

  • Katie2015
    Katie2015 Member Posts: 4
    #7
    Arimidex for Breast Cancer

    My oncologist told me the same thing.  Becasue my cancer was hormone receptive I have to take the drug for 10 years.  I find myself sweating alot because this blocks what little estrogen I have circulating right now.  I think it is a good idea to continue taking Tomaxifin.  After all they are always doing new clinical trails and might find out that 10 years is too long.  But until they do we should do what our doctors say.  At least this is my opinion.  I hope this helps you

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    #8
    When I first was doing HT

    When I first was doing HT (2012), my oncologist had said that I would be on that for five years.  I would switch drugs midway.  Then the time was extended to seven years, change midway.  In 2014, it became a ten-year plan, change drugs midway.

    Why I tend to take my oncologit's advice is that he also teaches in his field at a medical school.  I see him as being very current in his options.

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #9
    I am unsure what what Hormone

    I am unsure what what Hormone Therapys is- MY Dr  has me on Tamoxifin for 5 yrs (off 2 yrs now)-but told that is NOT Hormone.

     

    I did end up with Thickend uterus from that Med., about 2 1/2 yrs into it and had to have full hysterectomy-then went back on it.

     

     

    I hope others here have better info.

     

    Denise

     

     

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