BRCA2+ and DCIS 0 - Aren't there any GOOD choices?

Sept25

I was just diagnosed with a tiny (3 mm) DCIS in my right breast within a month of getting genetic test (BRCA2+) Both of my sisters and my mother are BRCA 2 + and my mother had BC in her 30's that metastasized 20 years ago. She did chemo/radiation/mastectomy and is still alive, thank God and was on tamoxophen for many years. In her late 30s, my sister had a DCIS 0 and had a lumpectomy and radiation. A few years later she had a DCIS 1 in the opposite breast and had a bilateral mastecomy. She is also doing just fine, thank God again.

I'm torn between lumpectomy and radiation and mastectomy and it seems when I speak to my doctors, I come away with more questions than answers. I would love to just do a lumpectomy and radiation but am hearing frightening things about the results. I hear that it makes your breast hard and dark and that the tissue they take for the lumpectomy will make your breast look disfigured as well. Additionally, my surgeon said that the radiation treatment will make reconstruction after mastectomy harder, and an implant may not be an option due to the tissue damage. I'm an athlete so using muscle to replace the implant is not something I would consider.

I've been asking about IORT and alternative forms of radiation but my current doctors are so far not being very supportive. I'm Kaiser Permanente and they don't offer this type of radiation locally so I think my doctors just don't know enough about it.

I'm also trying to find out more about nipple sparing mastectomy in people with the BRCA 2 mutation. This seems like a good alternative. Has anyone had success with this?

Maybe I'm just grasping at straws or in denial, but the doctors keep saying how lucky I am that it's so tiny still stage 0. Well, if I'm so lucky, shouldn't I have more options than just the 2 standard treatments?

I also asked my surgeon if an oophorectomy would be a good idea (I'm done having children) to prevent a recurrence. The geneticist and breast care coordinator both said I should consider it when I first was diagnosed with BRCA2. The surgeon dismissed it, saying it wouldn't really make a difference.

I'm really frustrated. These are big decisions. I've always taken good care of my body and I'm in good shape. I run marathons, ski, surf, and do all kinds of adventure sports and eat right. It's important that I don't lose the ability to keep doing what I love. I'm also still pretty young and am reluctant to just start chopping away at my body. I feel like these doctors are pushing me to go certain way because they don't want to make the effort to make sure the treatment is right for ME.

MelissaDallas

Have you looked at the FORCE website? Lots of good BRCA information there.

http://www.facingourrisk.org/index.php

Moderators

Hi Islndflygrl:

We want to welcome you to our community here at BCO. We're sorry for the circumstances that bring you here, but we're glad you've found us, and hope you find the support and answers you need.

The website MelissaDallas shared is a great resource for BRCA carriers. Also, check out our Surgery and Reconstruction forums for some valuable, firsthand experiences from our knowledgeable community. Everyone has their reasons for choosing the surgical path they chose, and it's always helpful to hear other perspectives.

We wish you luck in whichever direction you go, and just know that you are not alone! We look forward to seeing you on the boards!

The Mods