“I already went to see a genetic counselor and I was negative. So I don’t need to think about genetics anymore, right?” Actually, reconnecting with your genetic counselor every once in a while is a good idea. The field of genetic science is an ever-changing field. New discoveries are made all the time that can help us better understand the influence of genetics on a person’s health. For many people it is a huge relief when they revisit a genetics clinic and have testing that does not identify any mutations.
Why would anyone want to go back?
The main reason to go back is that if genetic factors are causing you to be at higher risk for diseases like cancer, there are screening tests available to help prevent those cancers or catch them early enough to be treated more effectively. Being proactive can make a big difference for your health.
If you talk to a genetic counselor again, they might tell you that there are new genes available for testing that we did not know about when you first had genetic testing. The genetic counselor might also tell you that there is new technology that enables us to look at the same genes in a new way and find mutations we would not have found before. In the last year, cancer genetics clinics around the country have started testing for many genes at once using tests called panel tests. Panel tests can look at more than 20 genes at a time. If you were tested before 2013 you were probably tested for 1-2 genes, and there may be other tests available to you.
“So if I call a genetic counselor, are they going to order a bunch of testing I do not need?” No. A genetic counselor will look at your family history of cancer and your own medical history. With that information, the genetic counselor will decide if additional testing could help identify an inherited syndrome, or if you and your family are not likely to have an inherited syndrome even with the new testing that is available. And even if there is testing available that might benefit you, you always have the right to decide not to proceed with testing, or to delay it.
An example of advances in genetics testing
Many women with a personal or family history of breast cancer have been tested for mutations in the BRCA1 and BRCA2 genes. If a person was tested before 2012, the test usually only looked for small misspellings in the code of the gene (sequencing). Since 2012 new technology has enabled us to regularly look at the BRCA1 and BRCA2 genes in a new way (looking for deletions and duplications), and we have identified mutations in many women who previously had testing that did NOT identify a mutation.
We also sometimes test women with a personal or family history of breast cancer for mutations in other genes like the PTEN gene, the p53 gene, and others.
Similar new genetic testing options are available for people with a personal or family history of many different types of cancer (colon, kidney, thyroid, stomach, pancreatic, brain, melanoma and others). If you still have the contact information for the genetics clinic where you had your first evaluation, consider giving them a call.
Take the next step:
- Find a new genetic counselor in your area by going to www.nsgc.org and using the “Find a Genetic Counselor” tool.
- Learn more about the U-M Comprehensive Cancer Center’s Cancer Genetics Clinic online or by calling 734-763-2532.
Learn more about genetics and cancer risk:
- Frequently Asked Questions from the U-M Cancer Genetics Clinic
- Trust Your Instincts: How one patient tracked her family’s history of cancer
- Breast and Ovarian Cancer Frequently Asked Questions
- Family Matters: When Cancer is Inherited
The University of Michigan Cancer Genetics Clinic provides counseling for people with a personal or family history of cancers that may have genetic links. If a link is confirmed, our specialized physician and genetic counselors will develop a plan for additional screening or lifestyle changes to help reduce cancer risk.
The University of Michigan Comprehensive Cancer Center’s 1,000 doctors, nurses, care givers and researchers are united by one thought: to deliver the highest quality, compassionate care while working to conquer cancer through innovation and collaboration. The center is among the top-ranked national cancer programs, and #1 in Michigan for cancer patient care. Seventeen multidisciplinary clinics offer one-stop access to teams of specialists for personalized treatment plans, part of the ideal patient care experience. Patients also benefit through access to promising new cancer therapies.