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  1. #1

    Default Tamoxifen? Any BC folks out here?

    Had a recall mammogram, which led to core needle biopsy that found ADH, which led to surgical biopsy ie lumpectomy. Thehy confirmed no malignancy, so that was great news, and clean margins as far as the ADH was concerned. Based on my case history, I have 2x chance of developing invasive cancer vs. a normal woman, and oncologist recommended starting tamoxifen which is supposed to cut my risk in half, ie bring me to normal. No brainer, right? But tamoxifen has serious side effects (uterine cancer, tho rare) as well as less serious like pretty significant weight gain and hot flashes. My general mindset is that I have to be convinced that a prescription is totally necessary, so I asked my doctor (who I like a lot!) whether the "normal" risk is really *my* baseline? I run marathons, low bmi, eat good food, dont smoke (whereas the "normal" stats include a lot of overweight smokers who eat entirely processed foods).
    Her response was "It's a very personal choice and ultimately it just depends how afraid you are of getting breast cancer."
    I know that may sound a little harsh, but I really appreciated that response--clearly it's not a medical necessity and it puts the ball in my court. A
    t the time I did not feel afraid of BC, or rather, I have faith in detection since it clearly worked for me so far. So, I chose not to go on tamoxifen. But, six months down the road, I do find myself wondering more and mroe often if anything's lurking in there. I have extremely dense breast tissue, I do drink alcohol, and, well, I've already had ADH at 43. So, I guess here I am, kinda afraid of getting BC. I have a 6mo checkup with the oncology nurse and will get a mammo scheduled. Plan to ask for an ultrasound or MRI in addition.

    Anyone out there who can tell me how their experience was on tamoxifen?



  2. #2
    Join Date
    Dec. 25, 2012
    Posts
    51

    Default

    My Mother took Tamoxifen for the full 5 years as prescribed, and had little to no side effects. Her breast cancer was already stage 4 when discovered, and she spent the entire year with chemo, radation and finally full radical mastectomy.
    At this point, the benefit of taking tamoxifen, outweighed the risks. My Mother lived another 14 years after breast cancer, and never again had any reocurence of cancer in her body.Sadly she died because of complications from cardiac and ulcer bleeds, non related to cancer.
    We felt that the tamoxifen helped my Mother stay cancer free.

    I was diagnosed with breast cancer in november after finding a small lump myself, and had a full radical mastectomy on dec.4th.
    I will find out next week, what my next order of treatment will be.
    I have already discussed Tamoxifen, and will absoloutely be agreeing to take it.
    Studies are showing in Canada, that the drug should be taken longer than the 5 years now.

    Good luck with your battle........hope all goes well for you!



  3. #3
    Join Date
    Jun. 11, 2012
    Posts
    5

    Default

    Thanks for sharing your experience, and I'm sending you the strongest get well vibes I can across the ether. I hope you are recovering well from the mastectomy.



  4. #4
    Join Date
    Dec. 25, 2012
    Posts
    51

    Default

    Thanks for the good wishes!
    I am thinking positive, and am recovering well from the surgery.
    I already have a tissue expander implanted, as a base for reconstruction at a later date.

    I should have also said that the greastest risk with Tamoxifen, that applied to my Mother, was high risk of blood clot. She never did suffer a blood clot over the 5 years, and she did not suffer from weight gain either.

    I also had an aunt/not a blood relative( married to my father's brother) who was diagnosed with breast cancer before my Mother. My aunt underwent a lumpectomy, and was followed up with radiation treatments. My aunt did not take Tamoxifen, and within the 5 years post her lumpectomy, her cancer did come back. It appeared in 4 different areas, base of her spine, one spot in her lung, an unoperatable tumor beside her heart, and one spot in her skull.
    The specialists said she was terminal, and did not think she would survive more than 1 year. My aunt was a tough and positive, and proved them all wrong, by living for the next 20 + years!
    We always wondered if her specialist had recommended chemo, and tamoxifen, if her chances of staying cancer free would have been higher?

    You sound like you lead a very healthy lifestyle, and likely would not notice strong side effects from the drug.
    My Mom and I also lead a healthy lifestyle, non smokers, did not care to drink, ate healthy, were both low risk for breast cancer by most standards. Cancer does not discriminate, so you just never know.

    Some days now, I figure maybe I should start having a drink now and again..............LOL
    Thanks again



  5. #5
    Join Date
    Mar. 26, 2005
    Location
    Back to Normal.. or as close as I'll ever get
    Posts
    9,428

    Default

    15-year survivor here.
    I had the lumpectomy & lymphectomy for a very small malignant tumor (1cm) followed by 6wks radiation and then 5 years tamoxifen.
    Aside from the weight gain, no side effects or impact on my health and {knock wood} no return of the cancer.

    As the BC had already put me into early menopause, I cannot say if the drug added to the hot flashes I was already "enjoying".
    I was a non-smoker, hardly drank at all and was pretty active at the time.

    Here's to you & chestnut - wishing us all cancer-free lives for 2013 & beyond!
    *friend of bar.ka*RIP all my lovely boys, gone too soon:
    Steppin' Out 1988-2004
    Hey Vern! 1982-2009
    Cash's Bay Threat 1994-2009



  6. #6
    Join Date
    Jun. 25, 2007
    Posts
    2,215

    Default

    I am PM'ing you.



  7. #7
    Join Date
    Jun. 11, 2012
    Posts
    5

    Default

    got your PM Tpup Thanks (your inbox is full)



  8. #8
    Join Date
    Feb. 27, 2004
    Location
    Posts
    1,007

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    I am an 11 yr BC survivor. I took tamoxifen for 5 yrs and femara for another 5 yrs. the toxifen side effects didn't bother me as much as the femara. But they were not as bad as the ones from chemo and radiation. A bit of weight gain, some hot flashes are the main ones. I did have a positve pap smear about year 4, i had a LEEP that took care of it. My understanding was the first 5 years were the highest risk years. My cholesterol creeped higher and higher with the femara. Luckily it is usually low. It could be a concern if you already have a cholestol problem.

    It's your choice. There is a lot of info out there about toxifen so do so research and see what works for you.



  9. #9
    Join Date
    May. 24, 2006
    Posts
    2,896

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    My mother took it for years with little side effects. She felt it was worth it. Good luck in finding the right course of action for yourself. These choices are so personal its hard to say which way would be best for you.



  10. #10
    Join Date
    Feb. 15, 2004
    Location
    Ontario
    Posts
    7,831

    Default

    Had BC 13 years ago, 1 cm tumour, no lymph node involvement. Chose to have a mastectomy, no reconstruction (at the time it was not systematic). Had chemo, then took tamoxifen for 5 years. No side effect except weight gain (but at 50 I figure I would have started to gain weight anyway) and few hot flashes (only in the summer). Chemo induced menopause.

    FF to this year and, after annual mammograms, felt a pain in the same breast and a thickening... exactly the same symptoms as 13 years ago (I must be one of the very few who got a pain warning). This time, biopsy of the 1 cm lump, some cancer cells but fortunately clear margins. Six week radiation treatment (done thank you very much) and I am on letrozole which is the same medication as tamoxifen but for post-menopausal women). I have not noticed any side effects so far...
    I also heard last week that tamoxifen should be taken for more than 5 years... recurrence dropped to 21% from 25% after 10 years...



  11. #11
    Join Date
    Mar. 18, 2005
    Posts
    1,067

    Default

    My Husband took it for six years after his BC and complete left side mastectomy.



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