Have any men had genetic testing for breast cancer?

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Moderators Member Posts: 25,912
edited July 2022 in Male Breast Cancer

We are looking to get stories from men who have had genetic testing. Have you ever had testing? If so, what were the results? Would you mind sharing your experience with us? If so, please send us a PM, or share it here!

Thanks so much!

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2016

    What led you to do the testing?

    My mum died age 41 of BC, so when I was diagnosed aged 64 I wanted to know if I had inherited a genetic predisposition which I could have passed to my daughter, who has a daughter.

    What were your results, and what choices have you made based on the findings? 

    A single BRCA1:c.135-62T>C sequence variant was detected in the BRCA1 gene. The clinical significance of this variant is unknown. 

    Was payment an issue?

    No, the government paid for the test.

    Have you discussed these decisions with your family? 

    Yes. My daughter has joined a regular screening program. My three brothers don't want to be tested. 

    How did the results change you? 

    Not at all.

    What decisions where made based on the information? 

    Since the result was ambivalent, no decisions could be made. 

    What suggestions would you have for others?

    Get tested if you have a family history of BC so that your kids, and their kids, are aware of their risks.

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  • oddducklady
    oddducklady Member Posts: 58
    edited February 2016

    My husband had genetic testing after first diagnosed in Feb 2014. I brought up the subject and pushed for the consult with the geneticist. Not sure if my husband was even aware of the possibility as he was still dealing with the shock of the diagnosis. I felt badly about doing so as I believe it gave him something else to worry about but I felt strongly it needed to be done for the sake of his daughter and granddaughter. Medicare and/or our insurance paid for it. The entire panel he had done was negative which was a relief so it didn't impact treatment decisions at all. I agree with Traveltext that it is important to get tested.

    Traveltext- I think your answer was written out a lot better then mine! Good job.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2016

    Thanks ODL, but just copied it from my other post on a BCO thread asking for genetic testing stories.

    Reading your husband's treatment history I can see he was diagnosed at the same time as me. Sorry to read about round 2 and I trust the recent surgery went well. Was hormone treatment offered the first time round?



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  • oddducklady
    oddducklady Member Posts: 58
    edited February 2016

    Traveltext- My husband was started on Anastrazole after he completed radiation. I sure wasn't expecting the reoccurance, well, at least not so soon. Took us by surprise. I know for me I was just beginning to relax and breath, start looking forward and planning again. Sure not expecting for the MO to find a tumor in a lymph node on the opposite side. I have to feel lucky that cancer does not appear to be anywhere else so the MO keeps saying the outlook is good. It was hard to see him go through chemo again. He had so many serious complications the first time. Surgery went well but the drain was a pain (last time he had it for almost 8 weeks-this time it plugged up and needed to be removed so now we get to deal with that). Just the waiting to heal and start radiation. The plan is for him to start Tamoxifen after radiation. I see you are taking it. I'm hoping that the side effects are not too bad. You'll have to let me know what to expect! It sounds like you are doing well and I hope that continues!

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2016

    It's great that the recurrence was confined to one node and I believe, like your MO, that the prognosis is very good. So start planning again!

    I started on Tamoxifen after rads and have not experienced any side effects at all. In fact, I've never felt better.

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  • myman
    myman Member Posts: 11
    edited February 2016

    My husband diagnosed in 2013 and underwent extensive genetic testing due to rampant familial cancers. His mother passed away from breast cancer and his was the exact histology. He was tested for BRCA1, BRCA2, Lynch Syndrome, APC, BMPR1A, CDH1, MLH1, MSH2, MSH6, MUTYH, PMS2, PTEN, SMAD4, SKT11, & TP53.

    Much to our suprise all tested normal. We were sure this was the smoking gun as to why a perfectly health young man would develop breast cancer. It makes me wonder if there are other genes that have not yet been identified. Its just so coincidental.





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  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2016

    myman. That is strange, especially for a young guy. There are, however, many genetic variations that don't have a history attached to them, since genetic testing is a relatively new science.


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  • pops
    pops Member Posts: 4
    edited April 2016

    Yah  My daughter did the  paperwork  and  set up the  appointments and  I just showed up.  No genetic factors were found.  I was exposed to all sorts of  bad chemicals

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  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited June 2016

    My uncle died of breast cancer. My father died of pancreatic cancer. When I was diagnosed with breast cancer, the alarm bells went off and I was tested. The result was that I am BRCA2 positive (specifically, the 8765delAG mutation).

    Both of my kids - one son, one daughter - have asked to be tested, even before the recommended testing age of 25.

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  • Fiddleman
    Fiddleman Member Posts: 59
    edited July 2016

    There's virtually no history of any cancer in my family that I know of.  My grandfather (paternal) died of lung cancer in his 70's, but he was a heavy smoker all his life. A maternal aunt died of myelogenous leukemia in her 60's.  That's it. I'm still having the genetic workup.  I have no children, but my brother has 2 boys and a girl. One of the boys has 2 daughters.  I also have several female cousins. I doubt that my cancer was inherited, but if there is a smoking gun they should know, as it may affect them.  At the very least, it may give my oncologist more clues as to how to conduct my thearapy.  I'm also in a clinical trial for a Mammoprint genetic test for the tumor itself.

    Results from neither, to my knowledge, have come back, but I see my oncologist next Thursday anyway.  I hope he has something to discuss.    I was exposed to cigarette smoke up to age 27 (7 years as a smoker, the rest as 2ndary).  I was a biology teacher (formaldehyde, xylene, benzene and other nasty chemicals), my father was an industrial worker (asbestos) and I spent summers in the sun (the shore and summer camp) before there were sunscreen products.  I've spent some time trying to figure out how I got this beast, berating myself for personal choices I made long ago.  But I've decided that's a rabbit hole I'm no longer entering.  It's not important (at least for myself) how I got this.  The important thing now is how do I fight it and beat it back into it's own rabbit hole.  Will post here again, once I get more information.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited July 2016

    Genetic factors make up around 10-15% of MaleBC cases if you are BRCA2 positive and quite a lot less for BRCA1. That leaves a huge percentage for "other" reasons, including, of course, environmental. Good to have the genetic test, though, since there are obviously people who would be interested in your result. My 43-year-old daughter has joined a regular screening program. My three brothers don't want to be tested. There's some more HERE on the new MaleBC site Rob and I have built. You will see a genetic survey there that might be something you could do. It's a Boston researcher and she's desperate to get more guys doing the survey. You're right though, there's only so much beating yourself about as to the causes, since you will likely never know for sure. Anyway, with good treatment, wou've got an excellent prognosis.



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  • tymann7
    tymann7 Member Posts: 1
    edited October 2016

    I was diagnosed in April of this year of having IDC, in talking about family history with my oncologist, he suggested I have a BRCA test preformed. My sister and two aunts were diagnosed with breast cancer, so this information put me in a higher than normal risk class.

    I have a twenty six year old daughter and thinking I may be a carrier was more traumatic than being diagnosed myself.

    The doctor tested both the BRCA1 and BRCA2 genes and I was ecstatic to find out that neither one had any clinically significant mutation!

    WHEW !!

    I had a right breast lumpectomy last Monday, and can say everything went well, mass was removed with margins, also sentinal nodes showed no sign of cancer.

    Regardless of what my results were, I will still be overcautious about reoccurence, early detection is the key to success!

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  • cliff
    cliff Member Posts: 290
    edited February 2017

    I had the dna test done when I was diagnosed with breast cancer, negative results, I am now a lot more comfortable that I will not pass down breast cancer. Good thing too, My daughter just gave us our first grand child.

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  • topdubu
    topdubu Member Posts: 23
    edited May 2018

    I have been BRCA tested-negative. Three of my six sisters have also had breast cancer--negative for them as well.

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