For more information talk to your doctor about genetic counseling, call 479-878-7065, or email [email protected].
Don’t let the cost of genetic counseling prevent you from receiving potentially lifesaving information. You can apply for financial assistance by visiting the Oncology Supportive Services website.
What is a Genetic Counselor?
Genetic counselors have advanced training in medical genetics and counseling to guide and support patients seeking more information about how inherited diseases and conditions might affect them or their families, and to interpret test results.
You may be referred to a genetic counselor by a doctor (such as an obstetrician, oncologist or medical geneticist) to discuss your family history and genetic risks, or before or after having genetic testing. While genetic counselors are not medical doctors, they are part of your healthcare team and work with you and your doctor to help you understand: o Your genetic risks based on your family history
- Your genetic risks for certain diseases or cancer
- Whether genetic testing might be right for you
- What the results of genetic tests may mean for you and your family
With expertise in counseling, genetic counselors can also provide emotional support as you make decisions and empower you with information for your overall healthcare.
From https://www.aboutgeneticcounselors.org/who-are-genetic-counselors brought to you by the National Society of Genetic Counselors (NSGC)
Why should I see a cancer genetic counselor?
Most cancers develop by chance. However, when cancer seems to ‘run’ in a family, it could be because of a hereditary cancer syndrome. A genetic counselor can help determine if genetic testing is appropriate and could be useful in clarifying risk of cancer developing in individuals and their families. The decision to test is up to every individual, but a genetic counselor can help identify risks, benefits, and limitations of testing, as well as provide resources and recommendations for clinical management.
What are Hereditary Cancer Syndromes?
Genes contain our genetic information. Sometimes genetic changes, or mutations, occur in a gene that protects the body from developing cancer. This mutation can prevent the gene from working appropriately and cause an individual to have an increased chance of developing cancer. Some genetic mutations happen during a person’s lifetime and can be caused by many factors, such as lifestyle, environment, and exposures. Hereditary genetic mutations are different in that they are present in a person from before birth and are often inherited from a parent who may not know they carry it.
There are many hereditary cancer syndromes, and each syndrome causes a higher risk of developing certain types of cancer. The specific gene mutation determines which types of cancer a person has an increased risk of developing. Each group of associated cancers makes up a different hereditary cancer syndrome.
When a hereditary cancer syndrome is identified in an individual, this often provides an explanation for their personal history and/or family history of cancer.
What are the signs of Hereditary Cancer?
If any of these signs are present in your or your family, you could consider speaking with a genetic counselor to understand your risk of developing cancer.
- Cancer diagnosed at a young age
- Rare cancer
- Bilateral cancer (cancer in both of a pair of organs, as in both breasts or both kidneys)
- One person diagnosed with two or more cancers in their lifetime (not cancer that has spread from one location to another part of the body)
- Multiple family members diagnosed with cancer, especially across multiple generations
- Ashkenazi Jewish ancestry
- Family history of a known cancer-causing genetic mutation
What are some examples of Hereditary Cancer Syndromes?
There are many hereditary cancer syndromes. As we learn more over time about the complex relationships between genetic changes and risk of cancer, the types of cancers associated and the risk of developing each one can change. Below are a few examples of hereditary cancer syndromes that are commonly assessed with genetic testing. If you feel your family could be affected by a hereditary cancer syndrome, you could consider asking your doctor for a referral to a cancer genetic counselor or referring yourself to one at Highlands Oncology.
- Hereditary Breast, Ovarian, and/or Pancreatic Cancer syndrome (formerly Hereditary Breast and Ovarian Cancer (HBOC))
- Caused by mutations in the BRCA1 and BRCA2 genes
- Increased risk of breast, ovarian, pancreatic, and prostate cancers
- Lynch syndrome/ Hereditary Non-Polyposis Colorectal Cancer (HNPCC)
- Caused by mutations in the MSH2, MLH1, MSH6, PMS2, and EPCAM genes
- Increased risk of colorectal, uterine, ovarian, stomach, pancreatic, small intestine, urinary tract, brain, central nervous system, and other cancers
- Familial Adenomatous Polyposis (FAP)
- Caused by mutations in the APC gene
- Increased risk of widespread colon polyps, desmoid tumors, and cancers of the colon, small intestine, thyroid, stomach, pancreas, liver, and brain/central nervous system
- Cowden syndrome/ PTEN Hamartoma Tumor syndrome (PHTS)
- Caused by mutations in the PTEN gene
- Increased risk of breast, colon, uterine, thyroid, melanoma, and kidney cancers
- Li-Fraumeni syndrome (LFS)
- Caused by mutations in the TP53 gene
- Increased risk of female breast, brain, sarcoma, leukemia, lymphoma, pancreatic and adrenal gland cancers, as well as cancer in childhood
- Neurofibromatosis Type 1 (NF1)
- Caused by mutations in the NF1 gene
- Increased risk of neurofibromas, leukemia, gastrointestinal stromal tumors (GISTs), peripheral nerve sheath tumors, pheochromocytomas, and other and cancers of the brain and breast
If you feel your family could be affected by a hereditary cancer syndrome, you could consider asking your doctor for a referral to a cancer genetic counselor or referring yourself to one at Highlands Oncology.
What happens in a genetic counseling appointment?
Genetic counseling appointments are conversations that incorporate family history, science, and counseling. Your genetic counselor will ask questions about your personal and family medical history, with special attention to relatives diagnosed with cancer and their ages at diagnosis. There will be a discussion about how cancers can be passed down through the generations of a family and whether your family fits a hereditary cancer syndrome pattern. After discussing whether genetic testing could be helpful, you can decide if you want to have testing or not. This appointment can last from thirty minutes to more than an hour.
If you decide to have genetic testing, either blood or saliva will be collected and sent to a lab. Results are usually returned in 2-4 weeks, and your genetic counselor will follow up with you on what they mean and any next steps for you and your family. This can happen over the phone, or a second appointment can be made for lengthier conversations.
Whether you have genetic testing or not, your genetic counselor is a resource to you and your family for the long-term. This includes determining your risk of developing cancer, how to manage that risk, and the implications for your family members.
How can I find a genetic counselor?
If you would like to speak to a genetic counselor in the Northwest Arkansas area, please speak to your physician for a referral to Highlands Oncology Genetic Counseling or call 479-878-7065 to self-refer. We can help locate a genetic counselor elsewhere if needed, or one can be searched at https://www.findageneticcounselor.com/.