Genetic testing and DCIS

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Loveotters
Loveotters Member Posts: 8
edited April 2016 in DCIS (Ductal Carcinoma In Situ)

I'm curious if any of you ladies had genetic testing for BCRA 1/2 genes after diagnosis of DCIS. I'm 38 and was diagnosed on March 17 after I had already undergone a lumpectomy for what we thought was a papilloma, but high grade DCIS was found. Three weeks later, I had a re-excision to obtain clear margins, and after another cm was taken out, there was still some low grade DCIS found, but it was 2 mm from the margin, so I'm moving on and will talk with medical and radiation oncologist a tomorrow. The breast surgeon is really pushing me for genetic testing mainly due to my age. I have history in that my mom was diagnosed with stage 1 invasive, but she was post menapausal(58). She is doing great today, 8 years later. I'm really on the fence about genetic testing. My husband is afraid of the result, and I'm not sure that if I tested positive, I would be able to handle the stress of what that means(this diagnosis has me scared and fearful as it is). I have two daughters, 10 and 13, so I feel that I probably should test for their knowledge, but I am really confused about my feelings for this. Have any of you had to make this decision and if so, what helped you decide what to do? Thanks for any input any of you can give me.

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  • Maya15
    Maya15 Member Posts: 323
    edited April 2016

    Hi Loveotters, I am 36 and was offered genetic testing also because of my age. I decided to do it first because it could alter my treatment, and most importantly because I wanted the rest of my family to know if there is a genetic risk for them (I asked them first if they wanted to be told the results).

    Whether you can handle the stress is a very important factor. For me, the diagnosis was very scary and I don't feel like I could handle the stress of going through this again in the future (either another diagnosis or wondering every time I go for a scan), so I wanted to take care of everything at once to reduce the risk of it coming back. Most BCRA tests are negative and mine was, and that actually gave me and my family peace of mind.

    One option you have, since your daughters are young, is to put it off for 10-15 years and decide then if you want to do it. Or they could decide for themselves if they want to be tested when they're adults. I would go for whichever option you find least stressful, this diagnosis is hard enough as it is.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited April 2016

    I'd say "yes" on genetic testing, but only in conjunction with genetic counseling. That person can help you review your personal risk factors, including family history that you may not have realized was relevant to determining your personal risk profiles. Once all of that has been discussed they will help you determine what (if any) genetic tests are called for.

    Given your age at diagnosis, it is quite likely that your insurance co. will cover both genetic counseling and any associated genetic testing.

    BTW, my view is that knowledge is power. But a counselor will be able to help you decide whether to be tested (and for what) after reviewing any ramifications of a positive test result.

    HTH,

    LisaAlissa

    PS: I had grade three DCIS and was referred to genetic counseling based on my age at diagnosis. BRCA negative! If it had been positive, my treatment options would probably have changed

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  • Annette47
    Annette47 Member Posts: 957
    edited April 2016

    I was tested. No real family history other than my mom who was 75 when diagnosed (6 weeks before me) but I also don’t have many female relatives - no aunts, sisters, only one cousin, etc. Being pre-menopausal (45) and Jewish, they thought I should be tested just in case.

    I did it for two reasons - my daughters (who were 9 and 12 at the time), and the risk of ovarian cancer (more than the breast cancer). I'm not sure what I would have done about my breasts had I tested positive, but ovarian cancer is more scary to me because it is so much harder to detect in time, and if I had shown a higher risk of that I would most likely have gone ahead and had my ovaries removed, or at least planned on it as soon as menopause hit and I was done with them, LOL.

    I tested negative though, so didn't have to make those decisions.

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  • Loveotters
    Loveotters Member Posts: 8
    edited April 2016

    Thanks to those of you who responded. I've done more research and have decided to go ahead with the genetic counseling and probably the testing as well. I know it will my my doctor's happy, and I want to do all I can possible to empower myself to fight this disease! I appreciate your input

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  • myToyStory2
    myToyStory2 Member Posts: 162
    edited April 2016

    Females on my maternal side get breast cancer young and often, so I opted to get the testing done when it was offered. Because we have no cases of ovarian cancer in the family, I wasn't totally surprised to find out I was negative for the BRCA genes....but I still feel there's a genetic component in play. That's guiding my decision to have a BMX with my DCIS dx.

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  • LAstar
    LAstar Member Posts: 1,574
    edited April 2016

    I was tested for BRCA 1/2. If it had not been negative, I would have opted for BMX first without bothering with LX. Knowledge is power.

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