Topic: Genetic Testing Decision Making & Barriers You've Faced?

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

Posted on: Aug 11, 2021 01:56PM

Posted on: Aug 11, 2021 01:56PM

moderators wrote:

Hi all,

We're looking for members to share their experiences with making decisions regarding getting genetic testing and any barriers you have faced in doing so. If you'd be willing to share your story, could you please post here or send us a PM? Thanks in advance!

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Dec 4, 2021 12:10AM ModelMomCA wrote:

Hi, I’ve completed cancer genetics testing twice so far. The first time was 10-11 years ago, and my results were NEG for BRCA genes. The second time was about 3 weeks ago with a more extensive mutation panel, and it also came back NEG. I’m now waiting for my RNA cancer genetics results as my maternal and paternal lineage are extremely heavy with a number of cancers and cancer has not skipped a generation to date on either side.

I present as African American, but I’m extremely mixed and Ashkanazi Jewish. Both of my grandmothers passed before the age of 50 from breast and ovarian cancer. Both of my parents have also had cancer my mom breast and ovarian that was found accidentally, and my dad prostate cancer that his doctors watched and biopsies for 2 hrs with NEG results, and suddenly during the 3rd year it was cancerous and had spread to his other prostate side.

I’m having my ovaries and Fallopian tubes removed on the 14th of this month, and I’d like to have a double mastectomy due to an enlarged lymph node in my left breast that has grown since my last mammogram about 10 years ago, not to mention that I have category D dense breasts. However, without a POS cancer genetics result, and with the biopsy of the enlarged lymph node in my left breast returning benign, the surgeon I’ve spoken to says the hospital committee that oversees mastectomies will not allow her to complete a prophylactic double mastectomy on me.

What’s bothering me the most is that neither of my parents were found to have ANY of the current genetic mutations being tested at the moment and yet they both have had cancer. So, whichever genetic mutation they have has yet to be discovered. And bc it has yet to be discovered I’m SOL bc no one will take me seriously for a double mastectomy. So, I’m supposed to just sit and wait until I actually get cancer to do something about it…which is absolutely crazy talk to me!

I’ve had 3 aunts die from TNBC, HER2+ cancer before 50, as well as a first cousin who was dx and passed before the age of 30. I’ve even had a male cousin with breast cancer before the age of 40. And my great grandparents also died from cancer but I’m still not taken seriously.

I’m pissed and frustrated bc my relationship with cancer isn’t an “if”, it’s a “when”, and I need to do all that I can to protect myself. The statistics show that black women are less likely to get cancer but more likely to die from it than Caucasian women, and I’m starting to understand why…it’s bc when we ask for the help from doctors like I’m doing now to cut this off at the head…I’m being told “not yet”, “let’s watch it”, “the committee won’t allow it”. And these are the experiences that make black populations not trust medical doctors as a whole, bc we’ve seen women with far less family hx, get double mastectomies with no problem or hassle.

I just feel that there needs to be more discussion about how to handle women with very strong family hx of breast cancer who also test NEG for the currently batch of recognized cancer gene mutations. Are we supposed to wait for doctors to catch up with and recognize our gene mutations before acting to protect ourselves? With the way TNBC HER2+ has run through my family, there’s no way I’ll have time to fight it if I wait too long.

I’m going to allow the holiday season to run its course and continue to advocate for a double mastectomy in the new year. I’m meeting with a surgeon at Stanford on the 10th, and I pray this goes better than my previous meeting. Any advice would be greatly appreciated. Be blessed, mask up, and happy holidays :)


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