To take or not take Tamoxifen

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georgia67
georgia67 Member Posts: 29
edited January 2018 in Hormonal Therapy - Before, During, and After

I have been fighting BC since Feb of this year.  I have had 4 rounds of A/C and 12 rounds of Taxol, a double mastectomy.  The chemo got rid of all of the cancer except for a tiny spot that was removed during surgery. Clear margins, clear lymph nodes.  I did have a fast growing aggressive cancer.  It was stage 1A when removed.  The tumor was 2.5 cm. before treatment.  My estrogen receptors was 30% at the first biopsy and progesterone was 5%.  HER-2 negative.  After surgery my estrogen and progesterone was 0%.  I don't know how that works.... My MO still wants me to take Tamoxifen to see how I get along with it. He is concerned that the chemo didn't kill every tiny bit so there might be some still around somewhere else.  I would refuse it if it weren't for the aggressive fast growing part of my cancer. I guess I will always have a fear of a little seed floating around ready to start growing again. I remember reading someone saying cancer was like a dandelion that has turned fluffy and white and when you blow it it goes everywhere.  I still struggle with taking this long term.  I have been on it since last Wednesday but wonder at my choice.  My hair is just now coming in, my feet from neuropathy are finally getting a little better.  I am 68 and never had kids and still have all my lady things except boobs.  I am about as afraid of the side affects of tamoxifen as I am cancer.  Has anyone gone as far as having ovaries taken out to stop the estrogen?  But then again would this solve the cancer seed fear?  

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  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2017

    There are women on this website who have had their ovaries removed. I have not. I took Tamoxifen and except for trouble concentrating and joint pain I didn't have any debilitating side effects. Btw I am 6 years out last August. I did not have an aggressive tumor and didn't have chemo. I did have 33 radiation treatments.

    Frankly I never thought about not taking it as an added insurance policy but to be fair I didn't suffer with the drug either. My MO took me off the drug when I hit 5 years since DX. It's a crap shoot and everyone is different. I am a bit younger than you but not much.Good luck with your choice.

    Diane

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited October 2017

    No bad SEs with Tamox so far. You can see all my stats and age in my Bio/signature line. Some do very well on the anti-hormonals. I'd say try and see how you do. You can always change plans if SEs interfere with life.

    Good luck!!!!

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

    I am doing great on Tamoxifen. Minimal side effects and high motivation. Had 20 total radiation treatments, no chemo, lumpectomy. Not in menopause, so I did have my ovaries and uterus removed. Good decision for me, non stop cycles were the pits. You should at least try it and see how you do.

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  • ChgoDeb
    ChgoDeb Member Posts: 31
    edited October 2017

    IDC Stage 1 PR ER + Radiation on tamoxifen almost 4 years. Plan to stop when I hit 4 tears. Post menopausal but cant go on AI since I have osteoporosis. Extensive research shows food does more for lowering hormones than tamoxifen but without all of the horrible current and future side effects and damage.

    Anyone quit hormone therapy early??


    Thanks


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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2017

    ChgoDeb, I haven't seen researchthat indicates thatfood lowers levels more than Tamoxifen, other than not being overweight lowers your estrogen levels. Can you post links?

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

    I have not had side effects from tamoxifen however I have just had two abnormal pap smears which I never had before. I am postmenopausal. I have been on tamoxifen for 2.5 years and currently off because of what is going on. I had a cervical biopsy, endometrial biopsy and transvaginal ultrasound. My uterine wall is slightly thickened. Nothing has turned up, however I still keep showing atypical endometrial cells. Have no idea what this means and if tamoxifen plays a part. Next up is a D & C or I can wait 6 months and do another paps. Um no, want to get to the bottom of this so D & C it is.

    Nancy

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  • georgia67
    georgia67 Member Posts: 29
    edited October 2017

    Nancy2581  Something like that has been my biggest fear of starting Tamoxifen.  I had only a small piece of cancer left after chemo taken out during surgery.  My estrogen was 35% before surgery so I am wondering and keep wondering is the cure worth the risk.  My doctor said I was at 90% cure but he wanted me at 100%.  I just hope its worth the risk.  I though Taxol was going to be the end of me and still live with foot pain and neuropathy in my feet.  


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

    Georgia - yes I am fearful of tamoxifen now. My MO said I could continue with it. I don't get that? Just because nothing has turned up the atypical endometrial cells though benign have to be atypical for a reason, right? I worry something sinister could be brewing. It worries me that I'm not taking tamoxifen, but it worries me if I do take it. Anyway, just make sure you keep up with yearly or even every 6 month pap smears.

    Nancy

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  • pupmom
    pupmom Member Posts: 5,068
    edited October 2017

    Georgia, I am your age and on tamoxifen. It hasn't caused me any real problems, except hot flashes which are now, after two years, much better. I don't understand why your MO wants you on it if you have 0% estrogen and progesterone. Biopsies don't really count in terms of our stats. I was told after biopsy that I had ILC. Turns out I had IDC with ILC features. They have to look at the whole tumor to know its biology. Anyway, if you are actually triple negative hormonals would do you no good.

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  • CCtoo
    CCtoo Member Posts: 41
    edited October 2017

    Chgodeb,. I cannot take se from Tamoxifen...am 81, just had lumpectomy..have severe osteoporosis, and no estrogen left at my age, and even had problems with lack of estrogen before breast cancer!! Which was er+!!! Makes no sense! Does tamox. Kill cancer cells? I read it just blocks estrogen so cells do not grow! Could someone tell me!!

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  • Tpralph
    Tpralph Member Posts: 487
    edited October 2017

    Cc you are right. Tamoxifen blocks estrogen which is used by the tumor cells to grow. The idea is that if they can't get the estrogen then they won't go grow and they will starve off

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

    georgia, I did have a hysterectomy 8 yrs prior to my BC DX. I always hoped that my ovaries being gone would give me a bit of extra insurance against BC! Your body produces estrogen in fat cells and also your adrenal gland. I try to use cosmetic and hygiene products that do not have estrogen in them. I guess it's my way of thinking I can actually do something about a potential recurrence! LOL. I have osteoporosis and took Tam for 2.5 yrs. Studies show that there is a slight decrease in the long term benefit vs 5 yrs. The SE's for me were minimal. You may want to get a second opinion. I agree with pupmom; what is the point if your BC isn't ER receptive anyway? Best wishes!

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  • pipatty24
    pipatty24 Member Posts: 3
    edited November 2017

    seriously thinking about stopping the Tamoxifen, I am having so much trouble with huge painful cysts in face, been to Dermatologist tried everything it just makes me sooooosf conious, you can cover up other scars can’t cover up your face! Also, dealing with major depression because of this, feel so ugly! When does quality of life become important

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  • Leilals
    Leilals Member Posts: 37
    edited January 2018

    Been through horrible chemo, can't barely walk. Started rads. I was given Tamoxifen today. 10 years. The lack of sex during chemo was toxic to my mind. Been married for 30 years, very active sex life. After reading side effects of Tamoxifen, this is the first time I've given up hope. Don't know if I want to even. Live.

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  • Goofycat
    Goofycat Member Posts: 39
    edited January 2018

    Leilals - not everyone has the side effects listed. Talk to your gynecologist for help. Vitamin E suppositories and coconut oil can help.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2018

    Leilals- first- congrats on 30 Years!! Please don’t give up hope. I too was terrified of what Tamoxifen would do to our sex life, but it has been fine so far. I do use coconut oil daily, but more as an insurance against dryness down there than for any actual problems. Trying to be proactive. The desire is not always there, but with a little effort, things have stayed good. Just let him know it may take a little longer to get things warmed up!

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