Tamoxifen as preventive?

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mammafox
mammafox Member Posts: 43

So I have epithial ductal hyperplasia, along with fibrocystic breast condition, dense breasts, 37 years old, Mother was diagonosised with stage 1 ductal in situ at age 68, I have had a total of 4 lumpectomies.   The last one showing abnormalities in both breasts.  The oncolgist wants me to have mamogram 1 x a year and  mri 1x a year 6 months apart and to take tamoxifen as a preventitive.  My gail risk assessment is 2.0.  THe oncologist said I am high risk for cancer over next 5 years and lifetime.

Anyone here with similiar situation?

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  • vmudrow
    vmudrow Member Posts: 846
    edited May 2011

    I was kind of in your situation. At age 49,  I had numberous biopsies, 5 lumpectomies, the latest coming back as atypical lobular hyperplasia, also dense breasts, very lumpy.  My mom had breast cancer at age 60, cousin and aunt also with bc.  The oncologist wanted me to take Tamoxifen, surgeon agreed with close minitoring (MRI yearly), she said be prepared for more biopsies. Had genetic counseling (mom negative for BRCA), my risk was figured at 40% chance of getting bc over my lifetime.  After careful consideration I had nipple/skin sparing masectomies May 2010.  I was tired of the worry every time I had to have a mammo, biopsy etc.  I have been very happy with the results. Not sure how you feel about that, but you could discuss it with your surgeon, mine agreed with me.  Good luck and hugs, Valerie

  • BritValarie
    BritValarie Member Posts: 152
    edited May 2011

    Hi mammafax,

    Our stories sound very familiar!  My mother died of BC when she was 38.  Her mother, my grandmother died before I was born somewhere around 50.  My mother's sister, my aunt died of BC around the age of 42.  My father and a brother have passed away from Prostate Cancer.

    I have had 2 lumpectomies, and several biopsies.  In December my biopsies diagnosed epithial ductal hyperplasia.

    I am going to see a breast specialist next month to hopefully get some guidance on what to do from here.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    mommafox--I had ADH 14years ago and had a lumpectomy.  Fast forward and had IDC.  Tamoxifen was not offered 14 years ago as preventative.  If it had been I would have rather taken it for prevention that to have to take it for BC which is what I am doing now. Just my take on it.

  • mammafox
    mammafox Member Posts: 43
    edited May 2011

    I am considered high risk and they found precancerous conditions.  The oncologist thought is to monitor with imaging every 6 months, periodic blood tests and tamoxifen for 5 years.

    I was wondering if anyone else out there is taking tamoxifen as preventitive.

  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited May 2011

    Although the screening regimen that the onc is recommending is standard for high risk women, you're very young to have a mammo or MRI every six months for the rest of your life -  40+ years.  That's a lot of cumulative radiation which is a risk factor itself.    Prophylatic mastectomies are another option that can get risk down very low - 1-2%.  If you are not already at an NCI center you might consider a 2nd opinion - they typically have a high risk program for young women, genetic counselors, etc.  None of the options are easy but at least you can weigh the pros/cons of choices. 

  • mammafox
    mammafox Member Posts: 43
    edited May 2011

    My oncologist is a part of the NCI in my state.  I did go through an indepth genetic counseling with her.

    The tamoxifen is supposed to help and cut my risk by 50%.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011

    Mammafox,

    I am in the same situation.  I am 43 and was had a diagnosis of ADH after an excisional biopsy last year.  My surgeon is suggesting Tamoxifen which I haven't done yet due to the fact that I had to have knee surgery last year and they didn't want the increase chance of blood clots.  I went back for my first 6 month visit in Dec and had a mammo which was clear.  I am due for my next visit the end of this month and I am starting to get nervous again.  I have read so much about the Tamoxifen that I really don't want to take it.  But then again, I feel like "what if" it prevents me from betting BC.  What did you decide to do?

  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    mvspaulding-I for one had lots of SE's but I have now been on Tamox for4 1/2 months and they have all subsided.   I wish that I had been offered Tamox when my ADH was found but that was not protocal 14 years ago. I would have rather taken it than to get bc. Don't let it scare it.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011

    Sherry, thanks for responding and I am sorry about your Dx.  In your opinion then, I should take it to lessen my risk?  I think I would with no hesitation if not for the other problem I have with the endometriosis.  I already had one surgery with that and had to have one ovary removed.  I am just hoping for another clean mammo come the end of this month.

    So you went 14 years with ADH and nothing until this past year?

  • Linda_M
    Linda_M Member Posts: 68
    edited June 2011
    mvspaulding I had a diagnosis of ADH and am taking Tamoxifen as a preventative.  I'm in my third month.  My side effects have been constipation (the worst), very dry eyes and some weight gain.  I take melatonin nightly for sleep and am taking Celexa to counter depression.  I am still on the fence with taking this.  I have been following Sherry and others on the Tamoxifen thread and feel I am doing the right thing after reading their stories and seeing what they've gone through.  My body is not so sure it wants to keep taking this little pill though.  I have my first six-month follow up mammogram in two weeks.  I think I'll have a better perspective on things once that is done.  I'm kind of in nervous mode right now and just want it done.  I have to say though, the thought of 4+ more years of this is a bit overwhelming...but it beats the alternative.
  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    MVspaulding-I had a lumpectomy 14 years ago for the ADH.  Either they did not get it all or I had more come back not sure which.  I had a bad hematoma after the lumpectomy and ended up with lots of scar tissue.  This last year they were looking at micro-califications and could not get a good biopsy so I had a MRI to rule out cancer and that is when they found the IDC behind the scar tissue.  It was 1.6cm so had been there awhile. I don't know your age and uterous thicking is kinda common.  I had a hystorectomy in 1994 at the age of 32 so I have not had to worry about that.  With your endementrious you would want to talk to your gyno about doing regular vaginal ultrasounds.

    LindaM i noticed you said you take Celexa.  Have you asked your MO about taking it.  As far as I know Effexor is about the only antidepressant that you can take with Tamoxifen as the others react and lessen the effect of Tamoxifen.  I think I have had just about every SE but thank goodness they have all worked themselves out.  I had terrible insomnia for the first 2 months but now am sleeping really good.  I also had really bad neasea and had to be put on prilosec.  I have cut down from 2 pills a day to 1 but have not been brave enough to try to cut it out yet. 

  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011

    Linda, did you go on Tamoxifen right after your diagnosis of ADH?  It will be a year since I had mine the end of this month.  When I first got it my BS told me she wanted to put me on Tamox.  But, I take birth control pills coninuously for the endometriosis and let me say I feel the best I have felt in years because I had so much pain with the endo and had so much bleeding that I was anemic all the time.  That all stopped after I had the ovary removed and they cleaned out the endo.  So when my BS said we want you to go on this drug but you can't take the BC pill anymore and then my gyno said if you cant take that we will put you on these Lupron shots.  I started to think that I would go crazy taking all these drugs that are messing with my hormones.

    Sherry, I am 43 now.  The first time I had a lumpectomy I was 37 and it was a benign fibroadenoma in my right breast.  The second time was last year and it was also my right breast and after my mammo I was referred to a Breast surgeon.  So I was kind of thinking this must be a little different.  When I had it done my surgeon was sure that it was a fibroadenoma again but she said she also took some of the tissue surrounding it.  Whent he report came back it was benign but the tissue around it had ADH.  I am kind of thinking I should just get the hysterectomy done instead of trying the Lupron shots because of all the added side effects.  I guess they could still keep my one good ovary right? 

    Just being able to talk about this with people who know is awesome.  I feel like I cant really talk to anyone about this, because they think I am worrying too much.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    mvspaulding if I were you I would go for the hysterectomy and tamox instead of the luprone shots.  At least with a hysterectomy you would still have one working ovary and you would still have estrogen being produced which is good for us.  The tamox acts as a barrier so estrogen cannot get to cancer cells but it does not keep us from producing estrogen which is good for us in so many other ways.Then your body can go through menopause when it is ready too.  I still have both of my ovaries but one does not work very well. I had a hysterectomy for a condition called adenomiosis which is kinda like endometrosis but inside the uterine muscle.  It was very painful and the hysterectomy was one of the best things I ever did.  Don't worry about expressing your self here.  You can never worry too much about trying not to get cancer. Prevention is better than treatment.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011

    Sherry, thanks for the advice.  I have spoken with my sister about this, who works as a midwife in the practice that my GYN is in.  She thinks that I probably wouldn't tolerate the Lupron very well either and thinks I should skipt that step and just do the hysterectomy.  I am not sure why my GYN suggested Lupron last year other than she knew how worn out I was from all the surgeries I had last year.  I don't know, maybe I just go off my BC pills and see how bad it is.  Maybe they cleaned it out enough that i will be able to tolerate my periods again.  Not going to lie, it has been heaven not having one. lol.

    Thanks again for listening.  All the women on here are so caring and supportive!! :-)

  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    mvspaulding so glad you talked with your sister.  How handy.  Good luck with what you decide.  All we can do is gather information and then make the best choices that we can and feel good about. 

  • mammafox
    mammafox Member Posts: 43
    edited June 2011

    I am going to go for second opinion.  Next week and see what this next doctor says.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011

    Let me know if new doctor recommends Tamoxifen as preventative as well.  I go to my Dr. next week too.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    2nd opionions are always good.  Wish I had done that in the beginning

  • mammafox
    mammafox Member Posts: 43
    edited June 2011

    So I went to get a second opinion.  To my suprise this oncologist believes in supplements and complimentary therapies.  He is running D3 level check and testing to see if my liver has the proper enzymes to activate tamoxifen.  I go back to him in 4 weeks.

  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011

    Mammafox,

    I just got back from my mammo/BS appt and I had a clear mammo!  Yay!  The only thing better is I don't have to go back for a year now and she said we can hold off on the Tamoxifen and keep everything as is for right now.  She wants me to alternate between her and my Gyno every six months so someone is seeing me every six months.  I am so relieved.  I have read a lot about D3 levels as prevention for breast cancer.  I take a glucosamine pill that has a D3 supplement in it for my knee but was happy to hear that it can also help with breast problems.

    Melissa

  • mammafox
    mammafox Member Posts: 43
    edited June 2011

    Congrats mvspaulding!

  • vmudrow
    vmudrow Member Posts: 846
    edited June 2011
  • mvspaulding
    mvspaulding Member Posts: 446
    edited June 2011
    Thanks everyone, I feel like I won the lottery!!  Smile

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