Women aren't the only ones at risk

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Charles_Pelkey
Charles_Pelkey Member Posts: 182
edited June 2014 in High Risk for Breast Cancer

Okay, small, small observation regarding the name of this particular forum: "High risk women."

I know that men constitute a small, small segment of the breast cancer community, but there are a significant number of us that fall into that "high risk" category, due to - at least in my case - being BRCA2 positive.

No, I am not complaining. Nearly 99% of breast cancer patients are women and I have, on more than one occasion, jokingly referred to myself as "one of the girls," because of the unusual frequency of my cancer in my gender. But, humor aside, I cringe at times when the default label for all breast cancer patients is "woman."

It's not recognition that we need, but the very basic awareness that the risk exists in all of us. Absent some level of knowledge of the risks faced by all humans, men (and medical professionals) will continue to ignore signs that, in a woman, would set off all of the appropriate alarm bells.

I think that the past 30 years have shown that awareness saves lives. The absence of that awareness can prove to be fatal. In my case, I was sadly pre-armed with that awareness, solely because my favorite uncle had died of Stage IV breast cancer. Twenty years later, I found an inexplicable lump and got the bad news ... albeit at Stage II.

I hope it doesn't take direct involvement with a loved one's death to raise the warning that all of us ― men and women ― have to heed signs, weigh risks and seek sound medical advice when we discover something unusual.


Breast cancer is not just a women's disease. It's something about which all of us need to be aware.

Okay, speech over. I will return my soapbox to the corner.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2013

    Hi Charles --

    We certainly appreciate your point, and apologize for the oversight. We'll discuss some options and get back to you!

    --The Mods 

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  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited February 2013

    Not to worry. I prefaced my remark by pointing out that I am not complaining. I am grateful for the site, for the discussion forums, all of the information that I found helpful during chemo and the many friends I made here (I admit that most of those friends are women).

    I do think it may be time, though, to scrub the gender-specific nature of some sections (not all) largely because merely adding men in as an after-thought tends to reinforce the perception that only women develop (and die from) breast cancer.

    I was pained, for example, when I read the December 24, 2012 issue of Time magazine, because an otherwise terrific article on genetic risks made the same egregious error. In a discussion of BRCA1 and BRCA2 mutations, the author began a key sentence with "Women with the BRCA mutations ...."

    At this point, I know first-hand that it's not just women.

    By the way, in hopes of not sounding like I am whining all the time, I do want to mention that it's been a year since chemo was wrapped up. Check-ups are good and that picture on my profile is way out-dated.

    My blood count is back to normal, my hair is back, the ugly effects of Taxol are gone and I feel pretty good for a 55-year-old guy ... who is damn grateful for the fact that he's made it this far.

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  • momof3boys
    momof3boys Member Posts: 896
    edited February 2013

    You look great, Charles!

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2013

    We are grateful as well! You look great!

    Again, we'll definitely take your recommendations into account :) We appreciate your input!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2013

    You're right Charles, and it seems like all that is ever discussed is BRCA when there are several genetic syndromes that increase risk too. They were more worried about Lynch Syndrome or CHEK2 with me and of course both of those increase risk for men too.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2013

    Charles - Thanks for your post. My friend just found out that his niece is BRCA2 Positive. Also, his mother died of BC pre-menopausally. He is most concerned for his 20 something daughter. How concerned do you think he should be for himself. How did you find it?

    BTW - When we did my genetic tree, 50% of the family (men and women) had BC about 4 generations ago. My brother who is a BRCA researcher was surprised and felt like on that side it has now been washed out of the gene pool.

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  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited February 2013

     momof3boys Thank you. I feel like I look a lot older after the experience, but I do figure that it's still much better than during chemo ... or the alternative, had I ignored that lump.

     MelissaDallas I agree Melissa. I only raise the BRCA issue, because it directly relates to my cancer. All of those risk factors are serious and affect both men and women.

    farmerlucydaisy I think it may well be worth his getting it checked out. If a parent is BRCA2 positive, you stand a 50/50 chance of being so yourself. I encouraged my sister and several of my cousins to get tested. Fortunately for them, they came up negative. What a relief. 

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  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited February 2013

    To the moderators:
    Thank you. Thank you, very much.

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  • april485
    april485 Member Posts: 3,257
    edited February 2013

    I just was tested yesterday for BRCA and Bart's syndrome. Praying I am negative and my kids never have to worry about this. I am happy that you are doing well. This is most definitely not just a women's issue!

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  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited February 2013

    April, I am thinking about you and hoping for the best. Obviously, the best news is if you come back negative, but don't view the opposite as a death sentence. It's just one of the many things we deal with in life and you can roll with it, especially since you will be armed with the knowledge that you have to remain vigilant about these things.

    Good luck and let us know how the test comes out.

    P.S. I agree about the kids. I have two and we're working with genetic counselors to make sure that we handle this properly.

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  • april485
    april485 Member Posts: 3,257
    edited February 2013

    Thank you Charles. Be well!

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