Not going back on tamoxifen

Nancy2581
Nancy2581 Member Posts: 1,234
edited June 2017 in Hormonal Therapy - Before, During, and After

As some of you know I had an abnormal pap smear May 17th. This Friday June 2nd I get to have a cervical biopsy and an endometrial biopsy. Fun times-NOT. My onc immediately had me stop tamoxifen. I don't know what the biopsies will show, but I'm pretty sure the tamoxifen caused the abnormal pap smear as I've never had an abnormal pap smear before. I've been doing them for forever.

I'm not going to go through this crap every year and worry about if tamoxifen is creating uterine cancer. Heck I don't even know whats going on right now - not happy.

Anyhoo, I'm sure my onc will suggest an AI. I'm fine in trying them although I don't like that choice either (gee am I sounding annoyed, pissed off, unhappy - you bet). I know everyone is different, but is any one better/more tolerable than another? I know when we discussed switching me to an AI at the 5 year mark (been on tamoxifen for 2 years 4 months) my onc said she would put me on letrozole (that's Femara isn't it?). Have no idea why she chose this one. Any suggestions on what I should try first?

Thanks

crabby Nancy




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Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Hi Nancy!

    I'm on Aromasin (a.k.a. exestemane). It made me moody (gone, thanks Celexa!) and gives me hot flashes. I don't think one AI is "easier" than another, but some BC patients do have to shop around to find which one gives them the least side-effects. Some patients will even try different generic manufacturers to find what suits them.

    The worst side effect is joint pain. Some patients develop trigger finger. I don't have joint pain per se; I just feel a little creaky if I've been sitting for a long time. (I'm thinking of getting a desk at work where you can stand up for part of the time.) This summer, my sons are really into taking walks, so I'm moving more than ever.

    Hope your biopsies go well!

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited May 2017

    Hi Elaine,

    I worry about joint pain. I walk my dogs twice a day every day and I can't have joint pain, but maybe the fact that I am walking will keep it away. I'll have to ask my MO why Femara if she chooses that. I'm sure she'd give me any one I want.

    Thanks

    Nancy

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited May 2017

    Have you considered a hysterectomy//oopherectomy? I had those procedures and take Tamoxifen. I am so glad that I had mine removed because I always had to worry. My cycles showed no sign of stopping. My MO suggested removal or lupron/zoladex shots. I chose removal which my OBGYN was happy to oblige.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited May 2017

    My MO said Femara (letrozole) is an itty bitty teenie tiny little bit better than the others but if I couldn't tolerate it she'd keep trying until we found one that worked for me. I get mine from Teva mfg and so far (fingers crossed) no side effects besides vaginal dryness ( I can't believe I just confessed that to the world, ha).

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited June 2017

    I don't like giving up body parts lol. Of course if I have to I will, but I'd rather not. Just me. I heard that giving up your ovaries puts you at risk for heart disease/attack. Not sure where I heard that. Breast cancer - the gift that keeps giving blah

    Thanks for your input ladies

    Nanc

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  • PhoebeLee
    PhoebeLee Member Posts: 11
    edited June 2017

    Nancy-

    Had to chuckle at that- "Breast Cancer- the gift that keeps on giving" although I'm not in a good mood today. This morning I got my biopsy results back- I have uterine cancer, very likely caused by the tamoxifen I've been taking since Jan 2016. I too am angry right now. I'm angry at this horrible choice we breast cancer survivors get. A drug that can either save your life or in some cases take it. Oh, but those stats are rare... meet me, the 1 in 500. I am angry because I wish my oncologist treated this possibility more seriously, asked questions to determine if tamoxifen was going to affect me in this way, maybe he could have asked me if i have some of the markers that suggest Tamoxifen may not be the best fit (I've always had endometriosis, bad periods, bad cramps, heavy bleeding, no children, late onset menopause (56). Estrogen does not want to let go of me! I too had a hard time trying to decide if I should take Tamoxifen. If I were to give any advice to those considering it I would say to ask a million questions of your onc, don't just fall in line. Questions like "How will YOU be monitoring me in case I get endometrial cancer?" In my case it was just my own scheduled visit to get a pap smear which they at first were not going to give me due to my age (57). I had seen the oncologist the day before, and he came in and flew out of the office in under 2 minutes. Needless to say, I'm angry today, and I'm switching oncologists, it will be a woman this time.


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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited June 2017

    PhoebeLee I'm so sorry you got this news. I agree with you that drs kind of brush the risks of uterine cancer aside. They make it sound like the risks are so small. Well it's not small when it happens to you. Big hugs to you. I had my cervical biopsy and uterine biopsy on Friday. No results yet, but two white spots were found on my cervix. 😡

    What happens next for you?

    Nancy

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2017

    nancy, before you switch to an Al, make sure you have a bone density scan done. I have osteoporosis and osteopenia and was put on Tam. I quit it after 2.5 yrs. Haven't told my Dr...Al's can cause bone loss, whereas Tam may improve. I do take calcium and Vit D supplements. MO suggested Prolia, but probably not going there. Had an hyst and ooph when I was 50. Dx'd w/BC at 58. The lack of estrogen from my ovaries didn't seem to matter to my BC. I am glad I don't have my uterus and ovaries to deal with, honestly. Nancy, I hope your biopsy results are benign.

    PL, so sorry you have another DX. I agree, the choices we have to make cannot be taken lightly. Best wishes moving forward.

    ((HUGS))

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  • HoundMom
    HoundMom Member Posts: 14
    edited June 2017

    PhoebeLee I am so sorry to hear your news. You deserve to be upset. Take some time to be sad and then get a new doctor. Take good care of yourself. We'll be here for you.

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  • MamaOz
    MamaOz Member Posts: 432
    edited June 2017

    pheobe, so sorry to hear this

    I am new to this forum

    I have completed chemo, just had BMX may 20 , and now face radiation and decision on which hormone supressor to take geez ... everything dealing with BC seems to be toxic or have major repercussions ...

    prayers for you be strong..

    mamaoz

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