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Prostate Cancer Genetic Testing and Family Testing Guidelines from Patient Empowerment Network on Vimeo.
What do patients need to know about prostate cancer genetic testing? Dr. Heather Cheng from Seattle Cancer Care Alliance shares information about genetic testing, testing guidelines for those with a family history of prostate cancer, genetic counseling, and when it’s important to share family medical history.
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Is it easy to get the genetic testing, and if you have a first-degree relative, if you had a father who had prostate cancer and your son, is it easy for them to get the testing, and do you recommend it?
Dr. Heather Cheng:
Yeah, I think that’s a question that I think it’s becoming easier, it is something that I think it’s important for people to understand what it can and cannot do, so if there is a strong family history of prostate cancer, for example, it is best to start with the person in the family who has cancer, if we were talking about genetic testing, if that’s possible. If it’s possible, testing that person, because if they have that marker, then we’re more confident that that’s important for the family, it’s sort of…if that person doesn’t have it, then it’s much less likely that the children or the relatives who don’t have cancer will have it. So I guess thinking about the person who has cancer and then also sharing with the family, sharing what the doctor is a family history of cancer.
But I guess one of the things that’s really interesting and I would guess, I would say challenging but exciting in the field, is that historically, we’ve had a reliance, or we’ve needed to do genetic testing through genetic counselors. And genetic counselors are professionally trained individuals who can answer questions about genetics, and sometimes patients or persons, people have a lot of questions, maybe they are not sure they want to do it, and so if they’re not sure that it’s important to get them the information so they can understand what the testing is about and then feel good about proceeding with testing. I think there’s a lot of value to knowing about somebody’s genetics, but there can be questions and concerns, and so we want to make sure every person has the chance to do that.
We have studies, and more and more, I think there is availability of genetic testing and people can do genetic testing through blood test or a saliva test, and the other thing that’s really important to understand is that there’s kind of two major classes of genetic testing, I would say, one is what I would call recreational for fun, and those are tests like 23andMe or Ancestry.com, where you’re trying to maybe you pay some amount of money and you want to know where in the world your relatives are from. That’s more for fun, it’s not really useful for medical purposes, if you’re thinking about genetic testing for how to manage your medical care, you might want to talk to your doctor about it, but there’s a different set of tests that are really medical-grade, and they shouldn’t be confused with each other because they have really different purposes. One is more recreational and one is, we need the quality to be much higher because we’re gonna use this information for your care, and we want to make sure is the sort of standards are a lot higher, and so for example, I have a study with my colleague, Dr. Paller at Johns Hopkins, where we were offering then we’ve met any type of prostate cancer, so any history of prostate cancer, and they don’t necessarily have to have a family history of cancer, but we would ask them about that, and if they’re interested in participating, then they get mailed, they can enroll at prostate cancer promise dot org, and then they are mailed us a Levite, and that test is a medical grade test that’s not one of the recreational tests, that one is, it is covered free of cost, so there’s no cost to the patient, and then there’s also an email and informational hotline if there’s more questions and somebody wants to, you know, learn more about it before they proceed. So that’s one way that we’re trying to expand the access of genetic testing to patients and their families.
I have one more question. When we talk about family history, does that mean we have to have one or two generations or just one generation, how many generations qualify for a family history?
Dr. Heather Cheng:
Yeah, that’s a great question. I think a couple of important points. So, family history is really the available information that you have, and sometimes people have a lot of information about multiple generations, and sometimes they don’t, and I think whatever you have is important, and if you don’t have all of it…that’s okay, but the important things to think about are, do you know about any family history of prostate cancer, but…that should be on both sides of the family. Sometimes people will think, “Oh, if it’s only on my father’s side, should I only think about it on my father’s side because it’s prostate cancer” which is a male cancer. But actually, it’s really important to ask about both sides, because maybe your mom’s dad had prostate cancer, or maybe your mom’s brother had prostate cancer, that’s also really important to know about, and then some of the other cancers are also really important, such as is their breast cancer and the family, and is it on the mom’s side or the dad’s side? And if it’s known, kinda how old was the person when they had that cancer, where they’re in their 50s or where are they’re in their 80s.
So those kinds of things, if it’s known and many people don’t know all of these details, then that’s okay, but if you do know it, then it’s important to share it. And I think sometimes there are relatives who are a little less comfortable talking about their health. But if you think if there’s a culture of saying, “This information might help my kids or my grandkids to share that with their doctors and then think about their own cancer screening more proactively,” then maybe that will be an incentive to sort of open up those dialogues, I know sometimes it’s hard to talk about cancer diagnosis, but it can be life-saving.