Thoughts on Tamoxifen

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stephaniegee
stephaniegee Member Posts: 81


I had a 3cm tumor +2 nodes, ER+, Her2- Brca 2 +.. I already had a double mastectomy I am about to start chemo followed by radiation for my lymph nodes and finally Tamoxifen for 5 years. I am doing everything that is advised the only part I question is Tamoxifen. I am 31 years old and my husband and I were planning to start a family but are now looking into surrogacy because I cannot get pregnant while on Tamoxifen. Are the benefits of Tamoxifen really so great? Am I being too conservative?

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  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited December 2013


    Hi stephaniegee,


    My situation is similar than yours. I'm 31 was diagnosed in June with invasive Ductal carcinoma with at least one lymph node involved. The lymph node was noticed on the ultrasound and therefore biopsied. The biopsy tissue was also tested for the receptors and I'm triple positive. I also had the genetic testing done and I don't have a mutation of the genes but I do have a variance in the BCRA2. That variance appears to be insignificant based on the current research. We were planning on extending our family when all of this appended, we already have a daughter who is about to turn three.


    My course or treatment is slightly different than yours. I had chemo prior to surgery in part to increase the success of a lumpectomy, in part because of the lymph node involvement. I had six FEC-D treatments and Herceptin (for HER2) added on to my last two chemo and continuing for almost a year. I had surgery on December 2 and looks like I'll be starting radiation in the new year. I'm waiting on the pathology reports to finalize the radiation treatment plan. Then the plan is to start on Tamoxifen.


    I too and questioning tamoxifen. I'm concerned about the side effects of it and of course the fact that the recommended course is five years thus limiting having more kids. I still want to have a good discussion with my oncologist about tamoxifen before starting but the peer-reviewed research appears convincing. There also appears to be a greater benefit for the first few years that you are on the drug, the benefits decrease over time. Again that is something I want to discuss further.


    That being said, I will most likely start tamoxifen but on my terms, meaning that I will come off of it when I want to while taking expert opinion in consideration. I've followed the treatment plan that was recommended to me to date but I'm of the opinion that I have the right it refuse any treatment at any time. If I refuse treatment, then I take responsibility for what may happen as a result.


    I don't think you are being too conservative, I think you are looking into what option will make you the most comfortable. At the end of the day you, and to some degree, your husband have to be comfortable with the decisions you make. Only you know what is the right decision for you.


    Hope this helps and that chemo is not too hard on you.

  • edwards750
    edwards750 Member Posts: 3,761
    edited December 2013

    Good answer once..I am older than you guys; not having anymore children. Already have 5 and 8 grandchildren...haha. The ultimate decision is yours to take or not take or quit taking or not just be sure you can handle the decision w/o looking back with regrets. No second guessing because it will drive you crazy. All of us wish we had all the "right" answers but the thing is the right answer is the decision you make for yourself...your life, your body. You are so young and having children was w/o a doubt the proudest moments of my life; I would hate for you to miss out on that experience...diane


  • rgiuff
    rgiuff Member Posts: 1,094
    edited December 2013

    From reading these boards, I've seen that many young women like yourselves do 2-3 years of tamoxifen, then take a break to have children.  Usually, this is OKed by their Oncologists. If yours doesn't agree, get a 2nd opinion! The whole reason for surviving breast cancer is so that you can continue on to have a life, and this is a huge part of life!  Fear of breast cancer should not have to limit all your future life choices. And pregnancy actually reduces the risk of BC. There is a forum on here for women who are in this exact situation.  Just do a search for "coming off tamoxifen early to have a baby" and good luck to both of you!  

  • josgirl
    josgirl Member Posts: 231
    edited December 2013

    I see I am defintely not alone in this struggle.  I am 34 (33 when diagnosed) and was just starting to get pregnant again (have a 2yr old).  My onc (who I love and went through 4 opinions to find him) is doing a lot of cutting edge research on pregnancy and BC.  He says absolutely must do 2yrs on Tamox and then can get pregnant.  I did do fertility preservation and he recommends using those eggs for IVF instead of trying to get pregnant naturally.  Mostly I think just due to time. But by that time I wil of advanced maternal age too so better to use the eggs from pre-age 35.   I have no idea what chemo did to my fertility and still haven't gotten my period back (only one month out of chemo and was on Lupron so not expecting it for awhile...before I get worried anyway...)

    After pregnancy I need to go back on Tamox and finish out the 5 years.  He said breastfeeding was up to me (kept my breasts in the dear hope of doing this).  I will just cross that bridge when it comes I guess.  Now I think absolutely I will breastfeed (was so wonderful for both daughter and me) but the anxiety and who knows what else will change by then. 

    Regardless, research on this topic is growing by the day as (sadly) more and more young women get diagnosed.  One thing I would look into TODAY is FERTILE HOPE - it is a charity anf part of the Livestrong Foundation.  They provide financial support and a wealth of knowledge about pregnancy and parenthood after cancer diagnosis.  Absolutely wonderful people as well.  Check it out!

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