As you know, if you’ve been reading every week, the topic of this blog is using data in education. In July, I changed things up by talking a little about my BRCA gene. Recently I posted again, stating I was taking more time off for a second surgery in the rebuilding process. My intent was to return to this with another blog on data, but something happened recently that made me change my mind.
Without going into too many details, essentially, I heard about a family with a mom, dad, son, and daughter, all adults, in which only the mom and daughter were BRCA tested after the dad’s side of the family was riddled with cancer for many, many generations. The results came back with a positive on the daughter and a negative for the mom. The dad and brother were not tested. I talked to the wife/mother for awhile, giving her some facts to hopefully open her (and her family’s) eyes to the need for the husband and son to be tested, too, and the husband (who’s obviously positive) to be doing monitoring and testing for various cancers.
It seems like there are so many half-truths or lies related to BRCA in males that are being passed around, even in the medical community. On the one hand, I understand that ignorance is to be expected as BRCA is a fairly new discovery. After all, there are still half-truths and lies being passed around the general public related to diabetes and down syndrome, both of which we’ve been researching for many more decades. On the other hand, this ignorance can cause unnecessary pain and anguish, so I’m going to do my best to combat these myths.
If you suspect your family may have BRCA, here are some myths you might want to read over and get the truth behind them.
Myth #1-BRCA is Passed on From Woman to Woman
BRCA isn’t actually a gene; it’s a gene mutation. If you have a healthy gene, it actively fights cancer. If yours is mutated, it doesn’t. So, basically, when a baby is first being formed, first making his or her own DNA, either they get that particular gene from their mom or their dad. The sex of the parent that gives it doesn’t matter, the sex of the child formed doesn’t matter. It’s a 50/50 shot, period. I got mine from my dad. We assume he got his from him mom, although she was never tested. It is in no way connected to the X or Y chromosome. Sadly, this is one I’ve had to explain to people in the medical field. One of the places I had my screenings done even had a form where, if you were under 40, you were to check the woman in your life who had breast cancer. The choices were limited to things like, “mom’s sister,” not aunt, but “mom’s sister.” I was once told I couldn’t have gotten the mutation from my dad. I made a joke about, “That’s weird because I got all my other genes from him,” (seriously, I’m my father’s daughter for sure), but proceeded to explain that it did, in fact, happen.
Myth #2-Men Don’t Have Breasts and, Therefore, Can’t Get Breast Cancer
This year alone, an estimated 2,550 men in the US will be diagnosed with breast cancer. All people are born with breast cells forming tubes and unfinished ducts. As puberty begins in females, their ducts fully form. In men, unless something unusual happens, his ducts stay undeveloped. However, he still has those cells. They still split throughout his life. And with each split, there is a chance, however small, that cancer will form. Men who know they are BRCA positive can start getting annual mammograms as well. No, I’m not joking. Those miracle workers actually get, somehow, the tissue to get squeezed in that machine. Exactly when to begin can be discussed with your doctor, but, as with all cancers, the earlier you catch it the better. And before the comments start coming in, yes, men can and have made breast milk.
Myth #3-BRCA Only Effects Women’s Reproductive Organs
I can’t put into words just how very false this is. For one thing, the BRCA mutation does increase the chance for male reproductive cancers as well. For example, prostate is greatly increased in BRCA positive males. There have been studies linking BRCA to increased chances with testicular and penile cancers as well. For another, equally as scary, thing is BRCA has also been linked to an increase in chances of melanoma and pancreatic cancer as well. In case you are not familiar, these effect organs shared by both sexes.
Myth #4-Men Don’t Need to Know if They are BRCA Positive
When I asked several BRCA positive women (Hey “sisters!”) what they wished everyone knew about BRCA in men, the overwhelming answer was that men should get tested. There are several reasons to know if you’re BRCA positive as a man. With that knowledge, you can make a plan with a team of doctors to begin screening for all those cancers mentioned above. You can also family plan better. I know a woman who made the choice only to adopt because both she and her husband were BRCA positive, for example. There are options with IVF as well. Remember, even if you’re not worried about the increased cancer risk because you don’t feel as the increase is statistically significant, if you have a daughter, her risks may be much higher. The test isn’t cheap, so insurance companies sometimes fight against it, so the more people in your lineage you can show have the mutation, the more likely you are to get a yes to allow testing.
Myth #5-If You Get a Positive on the BRCA Test, You’re Signing Up for a Hard Life
Don’t get me wrong, I don’t love everything the BRCA mutation has led to. I miss my old body sometimes. I HATED the scares and close calls. I don’t like that I may have passed it on. However, here’s the thing: my cancer risks are what they are whether I know them or not. Whether that gene was normal or mutated isn’t altered by my knowledge of it. So, if I was going to have breast cancer at the age of 45, that would’ve been hard. Because I knew of my mutation, I chose to get a mastectomy prior to my 45th birthday, which was also hard, but not as hard as getting the same surgery while actively fighting cancer.
I don’t know what will happen as a result of talking to the wife/mother about BRCA. I can only hope she listened to what I said, went home and researched herself, and then had a heart to heart with her husband and son. I’ll probably never know if this happened. However, if that conversation, which led to this blog post, helps any family out there, please reach out and let me know. Contact me through the Make Assessments Count website or write a comment. I know many resources that can help you including HIS Breast Cancer Awareness and would love to pass them on.