hormone blockers

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Has anyone decided not to take the hormone therapy.  I had DCIS/IDC stage 1 grade 2 type cancer in left breast two different quadrants of the breast.  I elected to have a bilateral mastectomy with reconstruction.  My onotype test score came back low so chemo is not necessary and there was no cancer in the sentinel lymph nodes.  All the pathology reports on my cancer came back with very good results.  So if I have had both breast removed, it wasn't in the nodes the tumors are slow growing and not a need for chemo.  I am seriously asking myself why would I do the hormone therapy with all those side effects if the risk is so low.  by the way I have not gone through menopause yet.

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited June 2015

    I have had this very conversation with my DH. Dx below, onco type dx score 3. None of my maternal Aunts were able to tolerate Tamoxifen. I promised to try, the AI's, along with prescriptions for Wellbutrin and Metformin, to pre manage depression and weight gain. But I also told both DH and MO that screwed up hands, weight gain, or depression and all bets were off. Many women have no problems, and with luck that will be you and I, but I won't lose my hobbies or what little optimism I have left to SE's. My fingers are crossed for us both

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited June 2015

    I took Tamoxifen for 3 months and already an insomniac it completely destroyed my sleep and left me with fatigue and concentration problems. My primary care persuaded me to try Effexor generic with a view to help me start back on the tamox. I took it for 6 weeks and it is the worst thing I have ever taken. I stopped it 3 weeks ago and am still getting side effects, head buzzing, fatigue and weakness. In between the 2 pills I was going to the gym 3 times a week, afterwards just laying in bed, sleeping half the day when not working. I just managed to get back to the gym once this week as I am so weak and need to try to get some strength back that I need for a short vacation in a few weeks that requires some hiking.

    I have an appt. with a new onc. tomorow that my primary care wants me to see. I will listen to what they have to say but I am not taking anything until after my vacation and have decided that I am just not prepared to ruin each day for something that may or may not happen, if that makes any sense. I am scared of having no life now due to the drugs. That is just me. I am turning into a bad patient I guess but I am 60 and just want to feel well enough to get on with life. I would not recommend others do this and for those of us that have side effects I am sure there are many who do tolerate the anti hormonals well but I am just doing what I am comfortable with.

  • tgtg
    tgtg Member Posts: 266
    edited June 2015

    I was 71 at diagnosis, with a low-risk tumor (stats, including oncotype# below), and decided to decline messing around with Mother Nature's and her hormones because of, as lyzzysmom says, what may or may not happen. Furthermore I saw no logical reason for taking (1) a drug (tamox) that would cause weight gain, when all the literature says weight loss is key to lowering one's risk; or (2) a drug (AI) that would keep me from continuing to lower my risk by regular exercise--resistance, abs, cardio--and that would render my hiking riskier than a possible bc recurrence because of the likelihood of breaking an osteoporidic leg somewhere at 10,000 feet; or (3) a drug (either tamox or AI) that would lead to prescriptions for even more drugs to counteract side effects that then bring on their own side effects;or (4) a drug (tamox) that would increase my chances at my age of having a stroke or blood clots, both of which are undetectable (unlike a bc recurrence) and usually life-destroying. If I have a recurrence, I will deal with it as need be, and have no regrets or second thoughts about my decision. Since my surgery two and a half years ago, I have summited several peaks, hiked umpteen mountain trails, white-water rafted, romped with my granddaughters (now 11, 7, and 4), lost weight sensibly, and also done long-haul flights to Asia (twice), South America, and Vienna without fearing clots and deep vein thrombosis.

    But I made this decision at age 71, and my age certainly was a factor in it as well as my favorable tumor stats and prognosis. My husband and I were newly retired and still had so much health and energy, so many mountains to climb (literally and figuratively), and so many new places to see, that it was the best decision for us, especially since the recurrence might not even happen at all or might happen at an age when we either won't fret about it or perhaps even have enough wits about us to know about it! Lomalley, you are younger by almost half than I so your situation is different, and your concerns are also different. And lyzzysmom, I didn't think twice about being a "bad patient"--in my book, a good patient is one who questions doctors, researches the treatments being suggested, evaluates them, and makes his/her own decision about whether to follow the doctor's advice (note, I say advice, not "orders.") Good luck as you wrestle with this decision.

  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    I was 55 at diagnosis, took Femara for 10 months but got to the point where I could not get out of a chair without help, from being someone who did many Zumba classes each week, and eventually my breathing was affected......so badly I was sent for urgent heart tests......I follow intuition a lot and that said stop, take a break adn see what happens, within a few weeks I was totally normal!!! After two months break U started Aromasin, joint pains were less initially but as time has gone on these have worsened but the fatigue has been dreadful and I am very prone to depression. Have had lung problems again so have decided to stop Aromasin and review in two months........I have been taking it for 21 months now and feel ancient and creaky, even my fingers.........

    My golden rule is no matter what I refuse to take a second drug to counteract the side effects of the first........and in any case there are none tha help with my joint pain or sleep unless i stay on valium for ever which i won´t do.....I injured my head and neck and had to take valium and that was the only time i slept well since starting Aromasin...............

    ILC is slow growing, if I recur in two months being off Aromasin I reckon I would have recurred anyway...................not easy decisions

  • gavinsgrandma
    gavinsgrandma Member Posts: 407
    edited June 2015

    Hi Lilly, i know we have been on the same threads in the past, it looks as though we have a very similar situation. And I too am not tolerating these AI'S well at all and I have been on just on just about everyone and they all end badly😒 I too am very active and these ses are ruining my quality of life, I have a call into MO office to tell them that I have decided not to continue as many of the ses can be non reversible, I have already gotten Trigger Thumb with 1 cortisone injection so far, it has seized up again, my Achilles Tendon is seized up and my joints have swollen to the point that I cannot wear my wedding ring for the first time in 26, years.

    Shary

  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    I have not done any real exercise, other than some gentle walking for 4 months now..............I long to get back to it and have some endorphins floating around and just feel a bit toned..........I want to live not exist......and I looked hard at statistics and it seems that the benefit for me in real terms is 15% (50% of the 30% risk)............and good exercise, eating healthily and sleeping well are all risk reducers too and not possible for me on AI´s........so I think I can improve on that 15% with other things too...........and I have not had a bone density test yet...........am sure there will be some issues.......after 3 years........I wonder if it would be useful to have a thread for those of us taking a break or who have decided to stop taking the, and then assess recurrence, if any?

  • gavinsgrandma
    gavinsgrandma Member Posts: 407
    edited June 2015

    Lilly, I think that is a really good idea, I think there arecalot of us either contemplating stopping these med's or already have..... We are faced with very difficult situations as we continue on our BC journey's, I too want to live and enjoy my life, not just exist and accept that this is the new normal... I accepted surgery, chemo and radiation but on this side of the journey I want to enjoy my life again.

    Shary

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