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Cancer Genetic Counseling: Knowing The Facts To Help Your Family

If you or a close relative has had cancer, you may be concerned about not only your own risk for a future cancer but also whether your children or other relatives are at risk.

You’ve heard about cancer genetic counseling but how do you know if genetic testing is right for you?

Do you have all the facts to dispel the myths about genetic counseling?

Genetic counseling and risk assessment does not always mean genetic testing.

If you are considering genetic testing, how do you know if it’s the right test on the right person?

Tune in to hear Shari Baldinger, CGC, a genetic counselor, help you make informed decisions about reducing your cancer risk.
Cancer Genetic Counseling: Knowing The Facts To Help Your Family
Featured Speaker:
Shari Baldinger, CGC -Genetic Counselor
Shari Baldinger, CGC, is the manager of Genetic Counseling Services for Allina Health’s oncology clinical service line. Her clinical focus and passion are hereditary cancers, risk assessment, testing and prevention. With more than 30 years of experience in genetic counseling, Baldinger works to help families identify and manage cancer risks that may run among them. She oversees a team that provides genetic counseling services at multiple sites of the Virginia Piper Cancer Institute and via TeleHealth at a number of regional and affiliate partner locations.

Learn more about Shari Baldinger, CGC
Transcription:
Cancer Genetic Counseling: Knowing The Facts To Help Your Family

Melanie Cole (Host):  If you or a close relative has had cancer, you may be concerned about not only your own risk for a future cancer but whether your children or other relatives are at risk. You’ve heard about cancer genetic counseling but how do you know if genetic testing is right for you? My guest today is Shari Baldinger. She is the Manager of Genetic Counseling Services for Allina Health’s Oncology Clinical Service Line. Welcome to the show, Shari. Who is a genetic counselor?

Shari Baldinger (Guest):    That’s a good question.  A genetics counselor is actually a specially trained healthcare provider. We have national certification to do our job. Our goal is to take a person’s concerns about family history and interpret those complex histories. Try to, based on personal family history, help craft an individualized risk assessment for that patient. Given that personalized risk, propose health strategies – whether it’s screening, prevention, interventions--that are best for them. There is all this talk these days about when women should start mammography screening. It really should be personalized. It should be precision medicine. A genetic counselor can help assess that. Genetic testing can play a huge role in a small number of people to help in that endeavor. We can help them make informed decisions about testing and help interpret those results.

Melanie:  When might genetic counseling be right for an individual or a close relative?

Shari:  In general, if someone is really concerned about their cancer risk, I always say it’s good to get a good risk assessment because people often overestimate their risk. The red flags when a familial risk may be a unique concern or a person may benefit from considering genetic testing is if there is young onset cancer in the family. For instance, breast cancer before age 45 or 50. Probably any woman who has had a personal history of ovarian cancer or a close family member with ovarian cancer would benefit from that discussion. For colon cancer, young onset would be before 50. If there is a cluster of cancer in the family – three of four people with cancer – one should talk to a counselor. Then, of course, there are some rare tumors that may prompt, under any circumstances, they should be addressed for possible familial risk; like a medullary thyroid cancer something called a “pheochromocytoma” or certain types of brain tumors.   

Melanie:  Is it safe to say that for people who have no family history of cancer but still get cancer, genetics doesn’t necessarily play a role in that cancer?  

Shari:  No. Sometimes the family structure can be limited, for instance with ovarian cancer. Of women who have an inherited predisposition to ovarian cancer, probably 30-40% of those women had no prior family history of a relevant cancer. Let’s say I’m a woman who has only brothers and I got a genetic risk from my father who had only one brother. You may be fooled by the absence of other cancers in the family. If you’re young, even without a family history, it may be important. Again, certain types of tumors would prompt investigating the possibility of a familial risk.  

Melanie:  What would you like people to know about genetic testing itself?

Shari:  I think a couple things. One, genetic testing doesn’t equal genetic counseling. There are people who benefit from a discussion with a genetics professional to learn their cancer risks and how they should manage those risks when genetic testing may not be relevant in that circumstance. The other thing is, with respect to genetic testing, the goal of it is, if we can figure out what causes the cancer in the family, we can be more proactive rather than reactive in their risk assessment and management. We often may learn that there is a risk for cancer that’s not obvious based on the family history and sometimes can impact better treatment of those cancers and we can provide a huge benefit to the family. I think that’s something people should realize that the benefits, I think, extend beyond what most people realize.

Melanie:  What is involved in a genetic test, Shari?

Shari:   Physically, a genetic test is usually a tube of blood. It’s not a big deal. Physically, it’s not a big step for a person to take but the information is powerful, it’s limited, but it can be empowering. What’s important is, if a person gets a genetic test is that number one, they want to know is it the right test, how valid is the test, what’s it going to tell me if it’s abnormal, what’s it going to tell me if it’s normal. You don’t want to be blind-sided by information. You need to know this up front. Whether a person says “yes” or “no” – they know what they are saying “yes” or “no” to.     

Melanie:   What do you tell people about the results and what they can do with what they find out?

Shari:   That is one of the beauties of genetic testing. If we learn that someone is at a uniquely high risk for a particular cancer, we often can start screening much earlier. For instance, it may be appropriate to start breast screening with MRIs in one’s 20’s not at 40 or start colonoscopies in one’s 20’s and do them every one to two years. That would allow us to do one of two things, either find a cancer very early, which, if they wait, it could be life-threatening, or, in many cases, prevent cancer. There are also certain medicines that people can take to lower their risk of cancer depending on what we find. It allows us to get in the way and get better outcomes if we know what’s going on in the family. It’s not like learning that you are at risk for something and have to sit back and can’t do anything about it. We actually can do stuff about this.

Melanie:   Are there concerns about insurance paying for these services and are people concerned with if the results come back positive risk for a certain type of cancer that, then, this is on their record and they may have trouble getting life insurance and such?

Shari:   Gotcha. When I first started in genetic counseling and testing for cancer in the late 90’s, the number one reason people chose not to get a genetic test was fear that their health insurer would cut them off or raise their rates. Two things have happened since then. One, in the State of Minnesota in 2000 the State Legislature passed a law that does not allow an individual or a group insurer to use genetic information for underwriting purposes. Probably more importantly, in 2008, this preceded the Affordable Care Act, Congress passed the Genetic Information Non-Discrimination Act which basically prohibits group and individual health insurers from using the results of a gene test for any underwriting or eligibility. To be fair, most of my patients who have heritable risk want their health insurers to have this information so that they support and pay for the more frequent screening, the risk reducing surgeries, the interventions that are so important to keep them healthy.

Melanie:  In just the last few minutes, what is the most important thing that you want people to understand about cancer genetic counseling and how it can help families?

Shari:   I think it comes down to what I alluded to and what has gotten a lot of press very recently is the notion of individualized or precision medicine. Through seeing someone in genetics, we use family history and sometimes genetic testing to tailor risk and management for an individual and empower them to take control of this concern instead of being the victim of the concern. I think that a genetics professional can really help put all of this in perspective for individuals and families and help them manage these risks and prevent cancer. There is an old quote, and I can’t get it directly from someone in the 1600’s that said “a physician is far better to prevent disease because he prevents his patients from having the burden of disease upon him.” That’s what goal of cancer genetics is to prevent disease.

Melanie:  Thank you so much, Shari.  That is great information and so beautifully put. You’re so well-spoken. Thank you so much. You’re listening to The WELLcast with Allina Health and for more information you can go to AllinaHealth.org. That’s AllinaHealth.org. This is Melanie Cole. Thanks so much for listening.