Men with BRCA+ relatives - what are they doing?

sabihah

I'm curious how the men in others' families have reacted to the news that someone in your family has a BRCA mutation.

• How many men are getting BRCA testing, and how many are not?
• Are they going to get more cancer screening?
• Will they even talk to you about it?

A few women in our family have a known deleterious BRCA1 mutation. So far, I don't think any of the 3 men in our family with a sister or mother with the mutation are planning to get tested for it. I believe they are just planning to tell their kids about it when they're in their 20s, and let the children decide if they want to get tested or not.

I can see where they're coming from. Men with BRCA1 have some increased risk of cancer, but it's not as extreme as the women. Even if they did know they had the mutation, they would probably only do some extra cancer screening, and hopefully try to be healthier overall. Even if they choose to never get tested, they can still do the same things. For them, the risk of losing life insurance, long-term disability insurance, etc., may not be worth it.

I'm actually not sure if the men in my family are going to do the extra surveillance or not. Will they take my genetic counselor's advice?

So... how did the men in your families take the news? Did any of them actually get tested for a BRCA mutation? Do you know if they're doing any extra cancer screening?

You know what else would be interesting? It would be interesting to know what percentage of men and women with a known BRCA mutation in their family decide to get tested, and what percentage decide to forego the testing. I wonder if anyone has tried to study that.

Spiritlight

I am a man with BRACA2, I decided to have the test when it was offered to me. I am just in my fourties now and receive no extra screening for prostate or breast cancer, but was offered a chance to give a prostate biopsy as part of a study. Working overseas didnt allow me to take part or find out if anything was afoot.

There are many females with BRACA2 in our family. Both my Grandmother and Aunt died as a result of Ovarian cancer. Currently another of my Aunts has breast cancer, my Uncle also has it but I dont know if he is taking or receiving any additional screening for breast or prostate cancer.

My Mother passed it into me, but thankfully is unaffected. My Mum has had her ovaries removed as have my other Aunts as a precaution. BRACA is a spectre over our family and has affected me in terms of keeness to start a family.

My intention is to continue my search for an answer and am currently investigating teacher plants having already tried some in the Amazon. I believe that there maybe hope here.

sabihah

Spiritlight, thank you for your insights. How long has your family known about this? Did people pretty much decide whether they wanted to get tested right away or not, or did some people wait a long time before being tested?

What was your primary motivation to get tested? Did you just need to know, or was it something else?

I share your hope that we'll find an alternative that's better than watching and waiting until we get cancer, or removing organs to try to prevent cancer!