1. < Breast Cancer

Where can I get cancer genetic testing?

Posted by nlb122 @nlb122, Nov 16, 2022

My son had a pathology report from a dermatologist that indicates the possibility of Cowden syndrome. In researching it, breast cancer was one of the health events listed. My genetic screening is not until May, 2023. Where and how should I have that screening done when my hospital does not have much availability?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022

@nlb122, help me understand your situation better. It sounds like you are anxious about your possible increased risk of breast cancer due to your son's possible diagnosis of Cowden syndrome.

Your son has a possible diagnosis of Cowden syndrome, a genetic disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers. However, his diagnosis is not yet confirmed.

That sounds like a lot of maybe's and uncomfirmed possibilities. Has genetic testing been recommended for you? I might suggest that you look into a session with a genetic counsellor to better understand the role of genetic testing and if there is an urgency to have it done sooner.

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1 reply
nlb122 | @nlb122 | Nov 20, 2022
In reply to @colleenyoung "@nlb122, help me understand your situation better. It sounds like you are anxious about your possible..." + (show)
@colleenyoung

@nlb122, help me understand your situation better. It sounds like you are anxious about your possible increased risk of breast cancer due to your son's possible diagnosis of Cowden syndrome.

Your son has a possible diagnosis of Cowden syndrome, a genetic disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers. However, his diagnosis is not yet confirmed.

That sounds like a lot of maybe's and uncomfirmed possibilities. Has genetic testing been recommended for you? I might suggest that you look into a session with a genetic counsellor to better understand the role of genetic testing and if there is an urgency to have it done sooner.

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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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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2022
In reply to @nlb122 "In more detail, the pathology report for my son does confirm cowden syndrome. I had a..." + (show)
@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?

Jump to this post

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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1 reply
nlb122 | @nlb122 | Nov 20, 2022
In reply to @colleenyoung "Thanks for explaining further. That makes more sense now. I'm so glad that your appointment to..." + (show)
@colleenyoung

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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Thank you. That was very helpful.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Nov 20, 2022
In reply to @nlb122 "In more detail, the pathology report for my son does confirm cowden syndrome. I had a..." + (show)
@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?

Jump to this post

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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