Topic: High Risk for Breast Cancer? Start Here

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 1, 2011 10:54AM - edited May 18, 2022 04:42AM by moderators

Posted on: Sep 1, 2011 10:54AM - edited May 18, 2022 04:42AM by moderators

moderators wrote:

Helpful information for those who are at high risk for breast cancer:

Some suggestions from the main site:

In addition, there are also important Discussion Board threads for those at high risk for breast cancer, where you can find and ask for advice from others who are where you are, or from those who have been there:

Or, post right here in the High Risk for Breast Cancer forum.

We hope this helps!

--The Mods

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Jul 25, 2021 03:02AM Meggiedb wrote:

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.

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Jul 25, 2021 01:18PM - edited Jul 25, 2021 01:18PM by 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!


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Jan 12, 2022 03:18PM tbluhm74 wrote:

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.

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Sep 13, 2022 01:59PM lori52 wrote:

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.

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Sep 13, 2022 05:55PM farmerlucy wrote:

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.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 Prophylactic mastectomy; Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/10/2012 Lymph node removal Surgery 7/21/2012 Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015
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Nov 5, 2022 10:26AM newdonechar wrote:

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

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