BRCA1+ at 32, want more children & breastfeed

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bluefin
bluefin Member Posts: 50
edited January 2015 in Genetic Testing

Hi all,

I am recently diagnosed with breast cancer. I am doing neoadjuvant chemo (12 weeks of weekly Taxol, followed by 4 biweekly Adriamycin & Cytoxan treatments), then either a mastectomy or bilateral mastectomy sometime around June 2015. With the BRCA1 mutation, I know I the "safest" route is to go with the bilateral mastectomy, but I am not done having children and really want to be able to breastfeed any future children (I breastfed my toddler for 2 years on only my "good" side and only weaned due to this diagnosis). After surgery, my medical onc wants me to take Tamoxifen for 2 - 3 years prior to trying to get pregnant. My tumor is only weakly positive for estrogen (17/100), so he is fine with me not taking Tamoxifen for a full 5 years first.

If I kept the "good" breast, I would do increased screening every 6 months (alternating mammogram/MRI) and then remove the other breast along with my ovaries after I'm done having children sometime around 40. However, knowing that I am at a high risk for developing a new cancer in the other breast, I'm not sure if it is smart for me to keep that breast for another ~5 years. My understanding is increased screening vs prophylactic removal has about the same survival rate, the big difference of course is I just may need to go through treatment again if I get a second cancer. In my limited research, a lot of second cancers seem to crop up 10+ years after the first.

Anyone been in a similar situation or know someone who has?

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Dear bluefin, Welcome to the community. We are sorry that your breast cancer diagnosis and treatment have brought you here but we are very glad that you reached out to us. While you are waiting to hear from others you may also want to check some of the topics on theYoung with Breast Cancer forum where there are several threads with questions that may be of interest to you. Keep us posted. The Mods

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2015

    I hope you don't mind me responding. I'm BRCA negative but I developed cancer at 28 and I do have some family history. All postmenopausal but my family in recent generations has been about 90% male. I had a unilateral mastectomy because my surgeon didn't think I needed a double and I wasn't quite ready to take that step. I'm worried that I have some unknown mutation that will put me at risk for a 2nd cancer, but I haven't had children yet and I really would like to breastfeed. But the amount of time I'd even be able to breastfeed would be pretty small (1-2 months at the most and then I'd have to go back on hormonals) and sometimes it just doesn't seem worth it. Even if cancer #2 would be caught earlier than caner #1, obviously I don't want to do chemo again. Anyway, unless something shows up, I've been told not to pursue any more invasive medical procedures until I'm done with the trial I'm on. So it's out of my hands for 9-12 months. But I feel you on your dilemnia.

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  • anneoftheforest
    anneoftheforest Member Posts: 52
    edited January 2015

    Hello,

    I'm BRCA2+, 38 and was diagnosed after I was done having children. I breastfed my children for a long time and I understand your desire to breastfeed a new baby. I was diagnosed right after weaning my youngest but because I was either pregnant or breastfeeding I had to delay mammograms. I didn't know I was BRCA2+ at the time so maybe they could have done the mammogram while I was breastfeeding but it is harder to read results when you are breastfeeding.

    Have you been to the FORCE website? It is a site devoted to BRCA and other hereditary cancers. They have a forum that could be helpful reaching out to others. Here is a link that shows research about the risk of another primary breast cancer in breast cancer survivors that are BRCA+. It states a 37-40% risk of a new primary in the opposite breast within 10 years. http://www.facingourrisk.org/understanding-brca-an... That is a pretty high risk and very different from woman without the mutation. What do your doctors think about you keeping the healthy breast?

    I have read of many woman on the FORCE website talking about having children and being BRCA+. Perhaps you can find others who can help you weigh your decisions and discuss the limitations of screening during breastfeeding. There are also FORCE groups that meet in many states and offer support face to face.

    Best wishes on your treatment.

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  • bluefin
    bluefin Member Posts: 50
    edited January 2015

    Thank you for the responses.

    I had not heard of the FORCE website. I will have to take a look. Ugh, that is a high percentage within 10 years though.

    My doctors are leaning towards a bilateral mastectomy, and I think I really am too the more information that I find, but it just makes me so sad that the ability to breastfeed is being taken away from me. I'm probably a little extra sensitive about it as I lost my second son at 27 weeks, just 8 weeks before being diagnosed with breast cancer. I ended up continuing nursing my toddler with milk that should have been for him and then that ended abruptly when I was getting ready to start chemo. Sorry for the depressing history, but that is a big part why this has been such a tough decision for me to make even though it seems like it would be clear cut.

    The increased screening would be fine I suppose if I wasn't planning on a pregnancy or breastfeeding, but you are right it does cause problems with them being able to interpret the imaging. I ran into that when I was first diagnosed as I was still nursing my toddler at the time. The MRI was less of an issue than the mammogram, but they did still see some enhancement on the MRI on the healthy breast that was just normal milk ducts from breastfeeding, so I can see how they could potentially miss something.

    Above all else I guess a healthy me is most important. I do want to be around a long time for my toddler and any potential future children.

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  • anneoftheforest
    anneoftheforest Member Posts: 52
    edited January 2015

    bluefin - I'm so very sorry for the loss of your son. You have had to deal with so much at once. It makes total sense you wanting to keep breastfeeding a part of your life. It is part of mothering for you and it probably helped you grieve as well. Having cancer and being BRCA+ takes a lot of things away. But I agree you need to do what is best for keeping you healthy and around.

    Breastfeeding was a huge part of my life with my babies and I cherish that time. I was sad to lose my breasts but I was so relieved as well once the surgery was over. My own mother had died of BC when I was a teenager so it had been weighing on my mind for years. Breastfeeding was probably the only joy my breasts gave me :)

    Please do take care and keep us posted on how your surgery goes.

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