In honor of Men’s Health Month and Father’s Day, we wanted to shine a light on an important issue that does not usually get much attention: men and hereditary cancer. Men are often told that they don’t need genetic testing, since the cancer risks only impact women. However, this is inaccurate because there are cancer risks for male carriers of every hereditary cancer mutation. Also, the sons and daughters of male carriers are at risk to carry a mutation, so learning if the father carries a mutation is critical. Misinformation has implications not only for individuals but for their entire families.
Last week we held a Tweet Chat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman and special guests Alan Blassberg, Scott Anderson and Ben of The Buttfolio to hear what our community had to say on the issue.
Our audience shared a variety of personal experiences:
I am an oncologist at MD Anderson. And a man. With MEN (multiple endocrine neoplasia) #Hcchat
— Mark Lewis (@marklewismd) June 11, 2015
Dave Dubin, 3x Lynch Syndrome srvivr, founder AliveAndKickn, above average soccer player and coach #Hcchat — AliveAndKickn (@AliveAndKicknDD) June 11, 2015
Hi! This is Aishwarya, Genetic Counselor at the Center for Jewish Genetics & Lurie Children’s Hospital of Chicago! #hcchat
— CenterJewishGenetics (@jewishgenetics) June 11, 2015
#hcchat Mike Roddie advocate for patient-centered #healthcare and health technology — Mike Roddie (@MikeRoddie) June 11, 2015
#Hcchat I am BRCA1+ with chronic bladder cancer #HereditaryCancer and BRCA impacts more than breast and ovarian cancers
— Ken Deutsch (@KDeutsch) June 11, 2015
Hi everyone! Happy to be joining #hcchat. I’m a member of the #lifraumeni syndrome community. Hoping more are joining! — Linda Zercoe (@lindazercoe) June 11, 2015
50% of those living with a hereditary cancer mutation are men yet no one is talking about it, including clinicians. Why should we be talking about it?
@MyGeneCounsel All the time. A huge problem with BRCA when people think it can’t cause breast cancer in men, or other tumors #Hcchat — Mark Lewis (@marklewismd) June 11, 2015
@lindazercoe Reminding men that they contribute half the genes! Fatherhood is not a spectator sport #Hcchat
— Mark Lewis (@marklewismd) June 11, 2015
Young black men more likely to die of #breastcancer than young white men. #hcchat Via @GoHealiohttp://t.co/WqxBhCL78Y — Lisa M Guzzardi, RN (@LguzzardiM) June 11, 2015
@lindazercoe#hcchat Same as in women. 1/43 of Jewish ancestry, ~1/400-1/600 general population. #BRCA
— MyGeneCounsel (@MyGeneCounsel) June 11, 2015
What is the most challenging aspect of having BRCA as a man?
@Hc_chat#Hcchat also I’ve come to accept that every 6 months I have to have a mammogram or MRI Routine colonscopy, dermatologist, PSA — PINK AND BLUE MOVIE (@pinkandbluedoc) June 11, 2015
#Hcchat Q1 It’s not a walk in the park. I haven’t had cancer but it’s a lot of effort and energy. it’‘s what I have to do for my health
— PINK AND BLUE MOVIE (@pinkandbluedoc) June 11, 2015
#hcchat q1. – biggest challenge being man with BRCA and cancer is that only approved targeted therapy is for ovarian and breast cancer — Ken Deutsch (@KDeutsch) June 11, 2015
How can we support men and open up this conversation?
As someone who used to be a guy, my advice is simple – learn, listen, get checked or at least find a partner who will do it for you #Hcchat
— AliveAndKickn (@AliveAndKicknDD) June 11, 2015
#Hcchat Q2, 3 You can make your own cancer risk managment decisions but at least get the information. It’s out there. It’s in the film — PINK AND BLUE MOVIE (@pinkandbluedoc) June 11, 2015
@KDeutsch that is very scary that approved therapy is not available for male #BRCA#hcchat
— Linda Zercoe (@lindazercoe) June 11, 2015
@Hc_chat Don’t wait until fifty for screening, especially if you have a #FamlyHistoryOfCancer. #Hcchat — Bones (@ChimperScott) June 11, 2015
— Lisa M Guzzardi, RN (@LguzzardiM) June 11, 2015
#hcchat Our hope is to capture the attention of the #youth in order for them to seek out #GeneticCounseling & #GeneticTesting if necessary.
— The Buttfolio (@TheButtfolio) June 11, 2015
Read the full transcript here or search #Hcchat on Twitter. Have a question or comment you didn’t get to contribute? Please post in the comments below.
Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our amazing co-hosts @Shewithlynch and @BRCAresponder and guests Alan Blassberg, Scott Anderson and Ben of The Buttfolio.