High Risk for Breast Cancer? Start Here

Meggiedb

I see this is an older forum, but just wondering if anyone out there could comment on the palb2 genetic mutation and a risk reducing mastectomy. I am 60, have known I am palb2 postive for 6 years and have undergone increased surveillance. No sign of BC, but as grandchildren are being born I think it may be time to consider a prophylactic surgery. Palb2 also increases chance of ovarian cancer, and one doctor I saw suggested getting ovaries removed as well.

Palb2 stands for Partner and localizer of brca2 . More is being learned about palb2 all the time, and all is showing a strong connection to BC.

My mom did have advanced bc in 1984. She survived, but only because she was in a clinical trial at the time, and had a mastetectomy, chemo, radiation and tamoxifen.

Thank you for your thoughts and imput.

moderators

Hi Meggiedb and we welcome you warmly to BCO. Prophylactic surgeries are a very difficult and personal decision, and we hope you can hear from others about this. We suggest that you start a new topic like "palb2 mutation and prophylactic surgery?" to better hear from others. Also using the search may be helpful. Please message us if you need assistance!

Warmly,

The Mods

tbluhm74

Greetings! After discovering I had a genetic mutation (ATM mutation) last February 2021, I had choices to make. I learned that I was at higher than average risk of getting breast cancer (15-40%), ovarian cancer (3%) and pancreatic cancer (5-10%). The number that made me most uncomfortable was the risk of breast cancer and I could not imagine a life of screening for this (I am 47 years old). After speaking about options with my healthcare providers, I decided to do a prophylactic mastectomy without reconstruction. Having been a nurse for 20 plus years at the time, I had spent time thinking through personal decisions I may have to make one day. One of the decisions was "What would I do if I got breast cancer?" I had thought I would get a mastectomy without reconstruction if that were to ever happen. I honestly did not think I would ever have to actually make this decision---we do not have breast cancer in our family and my lifestyle has been top notch most of my life. But, alas...

I ended up getting a prophylactic mastectomy without reconstruction on May 17, 2021. I think the biggest decision was thinking through if this was a crazy decision. I had to find my own voice and own values as I processed through this. I had to be articulate with my healthcare team so they would support me. It was helpful that my husband was supportive too. It was helpful that I'm petite and athletic and very small breasted to begin with.

Looking back, I have no regrets. I do not know if there are others out there like me, but I like being flat. I wear a padded bra even with tighter fitting shirts. I think because of my petite size no one even notices. I love when I jog now. I do not have any "extra baggage" bouncing around. It is liberating. With bathing suits I buy frilly tops and once again, no one seems to notice. I am happy that now my risk of breast cancer is lower than average. This feels good. I like that I do not have to do annual MRI's or mammograms. I still have to deal with the other cancer risks but those numbers are smaller and I can deal with that. It was an empowering process to go through. I realize that I do make decisions that are best for me even if they seem crazy.

Thanks for letting me share my story. Let me know if anyone has questions. I am happy to share. I am very happy with my decision.

lori52

First time here. My mother is going through her 2nd bout with breast cancer. She wants me to have genetic testing and would like some more advice on whether or not to have it done. Cost is my biggest concern but so many things running through my head at the moment. Any advice or experience with such testing would be much appreciated.

farmerlucy

I ordered the Color Genomic Test. It is very good and only $249 self pay. You can order it online, no need for a doctor. After you get you results you can speak to a genetic counselor if you feel like it. https://home.color.com/purchase/ordering-physician?sku=combo%203

newdonechar

hi. I was determined high risk for breast cancer. I don’t know why exactly yet because I am waiting for mammogram results.

My aunt was diagnosed with breast cancer at 67 but they found early…she just told us, she found out a year ago.

Now I’m worried because would I be high risk just because my aunt was diagnosed..or did they find something in mammogram but they haven’t told me. I have to wait until next week to find out now and I’m worried

gurlfriend2014

I am new to this site. And I'm not exactly sure how or where to post. Please let me know if I should be posting him in a different topic group.

I was diagnosed as having the BRCA 2 gene. January 2021, and because two of my sister and had already been diagnosed with iI made the discussion to have a double mastectomy with expanders and silicon implants in May 2021. the plastic surgeon said over, and over his happy she was with the results of the reconstruction and implants. My husband and I were depressed immediately, but we didn't say much then.

My breast are misshaped and looks horrible. I am embarrassed even to wear a tight shirt. My husband is completely turned off by how they look and has never touched them. I was sorry to have even my oncologist see them. Last September, during a checkup with her, I finally got the courage to Let her know how upset with the results of the reconstruction surgery. She said I could have the implants removed and have the. Implants replaced. Her office referred me to the plastic surgeon who did my first surgery. I am entirely uncomfortable with returning to and trusting surgeons to do a good job.

I desperately want the implants replaced, but I have no idea how to proceed. Does anyone have some advice?

Thank you.t

maggie15

gurlfriend2014, Is there another plastic surgeon in your insurance plan? You should have a consultation appointment with someone different if possible even if it means travelling a few hours. Try to find someone who does a high volume of breast surgeries and ask for details of what they would suggest and why. I hope you can get the unsatisfactory implants fixed.