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Topic: Share your Genetic Testing Story

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

Posted on: Sep 22, 2015 02:21PM - edited Sep 23, 2015 11:08AM by Moderators

Moderators wrote:

Dear Members,

Would you be willing to share your story if you have had genetic testing. We are interested in the following questions: What led you to doing the testing? What were your results, and what choices have you made based on the findings? Was payment an issue? How have you discussed these decisions with your family? What suggestions would you have for others?

Please share your story here, or send us a Private Message. We will be posting your stories here Community Members share their Stories, in order to inspire other visitors to our site who are in a similar situation.

Many, many thanks!

The Mods

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Jun 21, 2020 01:28PM Mavericksmom wrote:

I was tested for the BRAC genes in 2004. Results were negative. I had the Full Gene Rearrangement test on both BRCA 1 and BRCA 2 with no Mutation Detected in 2010.

At my MO's request, I am meeting with a genetic counselor on July 1st, at the cancer hospital where I was treated in 2019 for ILC. I was told they have discovered other genes that could be hereditary for breast cancer since 2010. I read through the list of genes on the Breastcancer.org page, and I am looking forward to this meeting. Not expecting to learn much but I'm open to the possibilities.

I am still confused whenever people ask if I am "high risk." I always assumed I was because I had both IDC and ILC, 15 1/2 yrs apart, and my mother, two of my three sisters and a cousin on my mother's side all had breast cancer. Now, I am re-thinking that. I actually feel my risk now is just slightly higher than any woman my age. It is a question I will ask the counselor when I meet with her.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)

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