Strong Family History...What Should I Do?

holytoo2 · April 2014

Hello Everyone!

I am 46 years old, and I was diagnosed with an IDC in February 2014. Because I have a strong family history of breast and ovarian cancer, I went to see a genetics counselor. She tested me for the BRAC 1&2 and both came back negative. However, she said because of my family's history, she strongly recommend I have my ovaries removed as well as think about a mastectomy option. I consented to my blood being further tested for other genetic mutations, but the results won't come back before my surgery, which is a lumpectomy with sentinel node biopsy. Has anyone else had a similar story? If so, did you opt for the mastectomy and ovary removal? Do you think I am just worrying for no reason? Thank you for any advice you can offer.

lintrollerderby · April 2014

Hi holytoo2 and sorry you are here, but glad you found the site. I'm glad to hear that you are negative for a BRCA mutation. If I may ask, what is your family history because the particulars of that can make risk level clearer. If you don't mind sharing, what relatives were diagnosed with which cancers (are there any others besides breast and ovarian?), what side of the family is each person on, how old were they at diagnosis, etc. There are other genetic mutations that can run in families besides BRCA, though they are less common. Also, have you had BART testing, which is the large rearrangement testing? It looks a little deeper at risk than the regular BRACAnalysis testing. Another thing to consider is that oftentimes, those who have significant family histories who test negative for BRCA mutations are sometimes told to re-visit the possibility of testing again later in the future. The reason for this is occasionally, a person will test negative because their mutation has not yet been identified, but is later in the future. Please don't worry too much about that, it doesn't happen often, but it has been known to occur.

As for deciding on mastectomy and oophorectomy, if you don't feel certain, please don't fret. It's a big decision. Do keep in mind that radiation could complicate the reconstructive process should you decide on mastectomy in the future and want reconstruction. It can still happen in most cases, but it is more likely to have problems when the surgeon is working with irradiated skin. Consulting with a gynecologic oncologist is perhaps a wise idea to further assess your ovarian cancer risk. Are you having chemo?

Warm Regards.

Moderators · April 2014

Surgery Options

Dear holytoo2, We are glad that you found your way to us and we are sure that you will get the support that you need from our members. In addition we have inserted a link above to further information on our site that may be helpful as you work through your decisions. Keep us informed as to how you do. With a warm welcome, The Mods

holytoo2 · April 2014

Hi lintrollerd,

Thanks so much for responding to my post. So, my sister and I were both diagnosed in our 40's. My maternal grandmother was diagnosed at 58 (she had to get a mastectomy), my mother's sister was diagnosed with ovarian cancer at 57 and died a year later. My dad's sister was diagnosed with breast cancer at 60( she had to get a mastectomy because of multiple cancer tumors in her breast, and she opted for a TRAM Flap reconstruction) My mom's brother died from pancreatic cancer (age of diagnosis was early 50's).

I am waiting for the results of my BART testing. I have an appointment with the reconstruction surgeon on 4/25 and a GYN Oncologist on 4/30. I don't know about chemo yet. I will found out after my lumpectomy.

I see you had both a mastectomy and your ovaries removed. Did you have them done at the same time? what was the recovery time like? What type of reconstruction did you have? Thanks again for taking the time to talk with me. I really need it right now. Have a Blessed day!!

lintrollerderby · April 2014

I'm sorry to hear about your family history. I'm glad you are having BART testing done and I have to say that the breast, ovarian, and pancreatic cancers on the same side of the family are a bit of a red flag for an inherited component. Perhaps it is an as of yet unidentified mutation. You may also want to check out facingourrisk.org for a great resource on HBOC (hereditary breast and ovarian cancer).

I have not yet had my mastectomy or oophorectomy; I listed them in my profile as upcoming procedures. I didn't find out about my BRCA1 status until I was done with treatment and I've been putting off the surgeries because I've needed a bit of a break from the medical world. My daughter tested positive for the mutation and she just had her prophylactic bilateral mastectomy with reconstruction about 5 weeks ago. She had skin and nipple-sparing procedures with tissue expanders. She's had several fills and is happy about the way it looks that her reconstruction will end up.

I wish I could give you more guidance with your decision, but it's such a personal and individual choice. Having the lumpectomy (depending on location in the breast) will likely not impact your reconstruction options should you later choose mastectomy. However, you may want to kind of decide which way you're more likely to lean before radiation.

Warm Regards.

holytoo2 · April 2014

Wow... I am so sorry about you and your daughter being positive for the BRAC mutation. I am glad you guys got tested and now know. This way you guys can and have made the best preventive measures. I pray your surgeries go well and you have as well as your daughter continue to have speedy recoveries. You have help me more than you know. I really appreciate you taking the time to share your story. God bless you and enjoy your Easter weekend!!

Strong Family History...What Should I Do?

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