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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 - edited Jul 18, 2020 04:56AM by Mavericksmom

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 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.

Update: I received the results of 54 genes that were tested and all were negative. Whatever breast cancer in my family and in me (twice), is not hereditary. I guess we are just unlucky.

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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Jun 5, 2021 05:32PM welcome_alb wrote:

Right when I turned 40 in the year 2000 I had my first mammogram, calcifications were detected. Had a stereotactic biopsy and then an excision biopsy which found a DCIS. Due to small breast size and suspicious cells in all samples, I had a mastectomy. My mother has 3 sisters that had breast cancer - one of them also had cervical cancer, one had a melanoma as well and a recurrence of her breast cancer, and one had breast cancer show up in her other breast and then had bone mets and died this past March. Although I was tested for BRCA1 and BRCA2 in 2013, I am going to M.D. Anderson for genetic counseling right now. We're high deductible plan, so I had to pay $930 just for patient setup and first 30 minute visit with a nurse practitioner. I have asked about potential total cost several times and I am told 'that will be discussed at your registration.' Although I know MD Anderson is a great facility, I find this lack of information regarding cost extremely unsettling. My aunt's death was horrific, and I want to do everything within my power to prevent any full breast cancer, so I do think it is worth consulting somebody since 20 years has passed since my DCIS diagnosis. I figured they know a lot more now than they did then, and I might need to be on some preventative medication like tamoxifen. I hope this is worth it.

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Jul 17, 2021 08:54AM - edited Jul 17, 2021 08:56AM by ShetlandPony

Mavericksmom, it is also possible that there is an environmental reason (an exposure shared) or a genetic reason that is currently unknown to testing. How did they rate your risk level based on personal and family history?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD

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