Lisa Schlager, vice president of public policy at FORCE: Facing Our Risk Empowered, sits down with CURE® to discuss genetic mutations in men that are not being addressed.
BY Kristie L. Kahl and Lisa Schlager
PUBLISHED February 21, 2020
Kristie L. Kahl: What are some of the disparities around men not undergoing genetic testing?
Lisa Schlager: There are several contributors to this. Ultimately, there has been the misperception that men don’t get breast cancer, which is completely untrue. Yes, fewer men get breast cancer. But men can definitely get breast cancer. In men who do get breast cancer, a higher percentage of them actually do carry an inherited genetic mutation. So, national guidelines say that any man with breast cancer should explore genetic testing to see if he carries an inherited mutation.
It’s important to note that men are at risk for other hereditary cancers, too. Certain mutations can cause increased risk of prostate, pancreatic or colon cancer. It’s important not to just think this is one-sided and it’s only a woman’s issue. Men carry these mutations as well, and they can pass them along to their daughters and sons at the same rate as the women in their family. We all have to remember that our genetics come from both sides of the family.
Kristie L. Kahl: How can we negate the fact that only women can pass down these genetic mutations?
Lisa Schlager: That’s a really big misconception. We have to understand that we are all 50% of each parent. So, 50% of our genes come from Mom and 50% of our genes come from Dad. I like to give an example of the fact that we all carry BRCA genes. Everyone has BRCA1 and BRCA2, so when people say I have the BRCA gene, well yes you do, we all do. But some people have a mutation in their BRCA gene. So, when you were conceived, Dad gives you a copy of BRCA1 and Mom gives you a copy of BRCA1, and hopefully both of those copies are healthy. Unfortunately, if you are a mutation carrier, let’s say Dad carries a mutation, the copy that he gives you is broken.
Now, you only have one health, functioning copy of that gene. These are tumor suppressor genes, so unfortunately if you only have one good functioning copy, your body’s ability to fight cancer is compromised as you get older. If you look at that fact that you can inherit it from either parent, that means boys and girls can inherit that mutation and, in fact, it can lead to increased risk of cancer in both men and women.
It’s really important to look at both sides of the family, and if someone tells you, “Oh, you can’t inherit a predisposition to male cancers from your father,” that is absolutely not true.
Kristie L. Kahl: Are there major differences when it comes to mutations in men and women?
Lisa Schlager: Mutations, no. The mutations are the same. A man can have the exact same mutation as a woman, and vice versa. The way it manifests can be different. For a woman, she might get breast or ovarian cancer. For men, of course they don’t have ovaries, so the might instead be at increased risk of prostate cancer, or some other type of cancer.
So, if you’re looking at your family history to try to determine if you have a history of cancer, you can’t just look at how many breast cancers you have because it could be a mix of different types of cancer – breast, ovarian, pancreatic, prostate, colon.
So, you really need to look at all of the cancers in totality to try to determine if there is a pattern there. And that is where a genetic counselor of health care professional can help you analyze what all those different cancers might add up to.
Kristie L. Kahl: How can we raise awareness around the issue?
Lisa Schlager: It’s super important for stars, like Beyoncé’s father who came out recently, to share information. It’s really important to raise the profile. Men in general have a reputation of not being quite as proactive about their health. Not all men are the same, but it’s important for men to understand the value of this. In some cases, we see men getting tested because they’re worried about their daughters.
That is very gallant, in a way, but the truth is they should be worried about themselves and their sons as well. We try to raise awareness that knowledge is power. This information can be useful and keep you healthy or help you fight disease more effectively. Men and women should pursue this type of information if it makes sense for them.
Kristie L. Kahl: What kind of resources does FORCE have to offer men?
Lisa Schlager: We are expanding our resources. We are trying to raise awareness around genetic mutations and testing among men and women. We have an entire section of our website dedicated to men who may be at an increased risk for cancer, as well as print resources.
We encourage people to visit our website at www.facingourrisk.org, and we can send materials out to providers or genetic counselors. And there is information that can be downloaded and printed off the website.