Tamoxifen side effects: is it worth it?

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aner18
aner18 Member Posts: 10
edited June 2014 in Stage I Breast Cancer

I've been on tamox. for three years.  Had small tumor- tubular carcinoma, .9 cm, stage 1, grade 1, 0 lymph nodes involvement.  Had lumpectomy and 7 weeks of radiation.  I am becoming very frightened about getting uterine cancer from side effects of tamoxifen.   I can tolerate the hot flashes but have had to undergo endometrial biopsy and d and c to rule out uterine cancer because on tamox. due to some abnormal bleeding.  (all was benign, thank God),  but the fear looms over me.  Due to the type of my bc. and i've had main treatment,  do I still need to be on tamox. for two more years?  I can't go on A.I. because of osteoporosis.  Anyone stop tamox. before 5 years?  Is there a big risk difference btwn. 3 years and 5 years?

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  • bookgirl
    bookgirl Member Posts: 128
    edited August 2010

    Hi, my Mom was diagnosed with uterine cancer this year (very early stage due to staying on top of check ups for changes just like you) She was never on Tamoxifen. For me the Tamoxifen is insurance and makes me feel like I'm still doing something active to fight the BC. I did Chemo and rads too. I guess I'll throw everything I can at BC and then do the same IF something else comes along. Talk to you Doc, and see if they fell one option or the other is best for you. Good luck I'm sorry any of us have to think about any of this!

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited August 2010

    Like you, I had a grade 1 tumor. I took tamoxifen for over 2 years, but the joint pain was bad, my endocrinologist and I have been struggling to get me back to the good side of osteoporosis, and I started realizing what the research said: That, out of ALL women, stage 1 and 2, Grades 1-3, 20% have a recurrence. My guess is, that stage 1, grade 1 is a lot less likely than Stage 2, Grade 3 to recur.

    So, I talked to my onc. She basically said, she will support me in whatever decision I make. I can do 5 years of tamox, 2.5 years of tamox and 2.5 years of femara, or nothing. 

    So, I picked nothing.

    Taking the last pill was scary, but rather liberating.  And it is so wonderful to not be swallowing handfulls of ibuprofen to stop the joint pain.

  • iHEARTu
    iHEARTu Member Posts: 213
    edited August 2010

    Hello. How soon did you all experience your SE? I just started 3 months ago.

    Aner- if you don't mind me sharing what you mean byabnormal bleeding? Like heavier or more frequent...I'm scared about the possibility of the uterine cancer too.

    -catherine

  • aner18
    aner18 Member Posts: 10
    edited August 2010

    To answer your questions:  

    The abnormal bleeding was two weeks of bleeding like a period, however, abnormal for me because I am postmenopausal. I had ultrasounds and D and C, both revealing polyps, fibroids, and thickening.  Still debating about taking this darn toxic pill of tamox. or not.

  • MarieKelly
    MarieKelly Member Posts: 591
    edited August 2010

    Hi -

    I also had a small, grade 1 cancer but refused any treatment other than the lumpectomy and SNB.  Was 8 months into menopause (age 49) at the time of diagnosis.  I haven't had a recurrence in these 6+ years despite not having taken tamoxifen, an AI or having radiation, so having done any of those additional treatments obviously wouldn't have helped in keeping me recurrence free thus far. Of course, it's only in hindsight that I know this, but some cancers are low enough risk that you can reasonably assume it when making treatment decisions if you understanding enough about the kind of cancer you're dealing with. 

    If someone with a small, low grade tumor chooses to accept these treatments (and yes, it is an option because ANY medical treatment is) and it gives them a sense of security without causing issues with quality of life, then that works for them. But when it's causing major problems (like needing a surgical procedure to make sure there's no endometrial cancer), then one definately has to wonder "do I really need this" because most really don't - especially small, grade 1, node negative removed with wide, clear margins. These treatment standards encompass huge diverse groups regardless of whether individually, someone actually needs it or not.

  • beckward
    beckward Member Posts: 59
    edited August 2010

    I declined the tamox. after a bilat. mast. with reconstruction.   Stage 1 ILC in one breast, DCIS in the other.  I've lost a friend to uterine cancer after she took tamox. for 5 years.  I have fibroids already, and I feel sure would have had a hyst. by now, had I taken the tamox.   My oncotype was a 5, and I found an oncologist to support me.  It's been 2 years clean for me, and I have to honor the friend who taught me to value quality of life.  Even if I have a recurrence, I will know that I made the right decision for me.   

  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited September 2010

    Yes - what I don't understand is this.  Recurrence percent with mastectomy and no node involvement is 3% (and I've read even lower percentages) versus recurrence after lumpectomy & radiation of from 5%+.  If Tamox is supposed to reduce recurrence by 50%, then we're only talking 1 1/2 percent less chance of recurrence w/mastectomy and no node involvement.  Seems like the risks of Tamox outweigh the benefits in that case. Am I missing something?   Do I have my facts wrong?  (I'm one of those people who doesn't take any medicine for anything because I don't have much  trust  in drugs in general - I'll even cut a tylenol in half:)

  • rgiuff
    rgiuff Member Posts: 1,094
    edited September 2010

    As far as stats go, I am in the same boat as you.  Also had lumpectomy and radiation.  I was ambivalent about starting the tamoxifen, because I am a person who did not like the idea of having to be "on a medication" and didn't like the idea of suppressing my estrogen.  But I decided to take it for whatever benefit it could give me, but told myself that I would definitely stop it if it started to show signs of causing me any major problems.  And to me, a condition that could lead to me needing a possible hysterectomy would be a major problem.  

    I did stop taking it briefly (for 6 weeks) over a year ago because of libido problems and intense hot flashes.  The libido was also a major issue for me, but I've managed to find a solution to fix that.  The hot flashes come and go in intensity and I'm just dealing with them.  Luckily, so far, so good, no problems noted on vaginal ultrasounds.  In November, I'll be on tamoxifen for 2 years.  

    I remember reading some statistics somewhere, not sure where though, about each year of tamoxifen completed decreasing the reoccurrence risk by so many points.  I'll see if I can dig that up if you're interested.

  • LivingIt
    LivingIt Member Posts: 710
    edited September 2010

    I had stage I also and had aggresive surgery and chemo after. Great result. Everybody was happy. 

    I stopped tamox after two years cause I wanted to switch to AI. I had heard that they had a better sucess rate if you were post menopausal. So asked to be switched and I was. I ,didn't know it, but then my cancer started to grow again. Now I have Stage IV. Liver/Lung/Bone/Lymph

    Essentially my b/l mastectomy and two years on tamoxifen bought me two years with my kids and husband. Dont walk away from something that is working.   

    I would say. Yes. Tamoxifen is worth the side effects. Definitely.

    Zoh

  • Lady_Madonna
    Lady_Madonna Member Posts: 472
    edited September 2010

    Just a warning... This thread will probably get a post from Janeluvsdogs and she will tell you to quit Tamox, lots of one-sided stats, etc. etc.  She posts anti-tamox, anti-hormone, even anti-chemo comments all over!  I went on a topic looking for real info and just got a bunch of one-sided propoganda.  Not sure what her agenda is, just wanted to warn you so you make sure you get accurace info. 

    Best of luck to you, I'll just be starting my Tamox journey at the end of the month, but my cancer is very aggressive so I think I'm in for the long haul...

  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited September 2010

    Thanks rgiuff.   If you can find the statistics by all means post a link.  I'll also keep googling to see if I can find something.  I'm having mastectomy instead of lump/rads and I know they'll advise Tamox afterward.  I'm post menapause.

    Also - does anyone know if anti-hormone therapy depends on your oncogene report or is that for something entirely different?

  • zoey1
    zoey1 Member Posts: 42
    edited September 2010

    I refused Tamoxifen after I was diagnosed in 2006 with a stage 1, grade 1, 5mm IDC, strongly ER/PR positive. Oncotype score was very low. I had a lumpectomy and radiation and went to a holistic doctor (flaxseeds, DIM etc.) January 2010 I was diagnosed with another primary, 6mm, grade 2, stage 1 IDC, same breast. I started taking Tamoxifen the next day. Mastectomy and reconstruction followed as well as genetic testing which was negative for BRCHA 1 and 2. I so understand not wanting to take Tamoxifen but the side effects have honestly been very manageable for me. 

    Warm Regards to All! 

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited September 2010

    I am struggling with Tamoxifen. I see it as the tipping point drug for me, but I am struggling mightily with the SEs, which are partly due to the drug itself and partly due to its interactions with other meds I am taking for another serious illness. Tamoxifen has two good non-bc related things to recommend it: it may lower cholesterol and it is good for the bones. Sure, it is officially classified as a carcinogen by the WHO because of the risk of cancer of the lining of the uterus, but overall, I decided in favor of it. The question now is whether I think living for years feeling tired and lazy and mentally deranged and therefore underachieving and unfulfilled when I go on 20 mgs is worth it....

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