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Where can I get cancer genetic testing?

Breast Cancer | Last Active: Nov 20, 2022 | Replies (6)
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@nlb122

In more detail, the pathology report for my son does confirm cowden syndrome. I had a mastectomy of the right breast in August, 2022, for invasive ductal carcinoma. I am taking letrozole but did not have chemo due to my Oncotype and mammaprint low risk scores. Initially, my health care facility had only one geneticist so testing was not available until Spring, 2023. They now have another and I have an appointment in 1/2023. What comes next in my treatment plan after so many delays and maybe even missed opportunities?

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Replies to "In more detail, the pathology report for my son does confirm cowden syndrome. I had a..."
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022

Thanks for explaining further. That makes more sense now. I'm so glad that your appointment to see a geneticist has been moved to January. It sounds like you are on your way to gettting answers about next steps and your treatment plan.

Sounds like this is a good time to get your questions ready for your oncology team. This article by Breanna Mitchell, M.S. a genetic counselor at Mayo Clinic might help:
- Genetic Testing for Cancer: 9 Common Questions about Genetic Testing https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/genetic-testing-for-cancer-nine-common-questions-about-genetic-testing/

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Chris, Volunteer Mentor | @auntieoakley | Nov 20, 2022

Hello, I am sorry I missed your original question here. I am glad that you are getting testing, but try not let the timing make you crazy. When I was first diagnosed with breast cancer, 18 years ago, almost to the day. They wouldn't even consider a genetic abnormality because I wasn’t of a certain genetically diverse group of people. Crazy how far we have come❣️
A few years ago I got a new oncologist and when she heard how cancer affected my family, she wanted testing. I was negative the BRCA1 and BRCA2. The geneticist looked at the list and asked if she could measure my head. Well I could have told her I have a giant head. Lol
I have cowden syndrome, I asked what I should do with this information, since I didn’t have children, she said to pass it on to every living relative. Also to tell my doctors. I called my two brothers that were still living and that was that. No real urgency, just another great piece of information to help out in the future. 😃
Have you done any reading about cowden syndrome?

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