Cancer/Oncology

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Cancer/Oncology

Genetic Counseling and Testing

The HealthEast Cancer Genetics Program sees patients who have concerns about their risk for cancer or the possibility of cancer running in their family.

Our program offers genetic counseling and testing to help you make informed decisions about your medical care. Knowing your cancer risk can affect the way you approach cancer prevention, detection and treatment.

Contact the Cancer Genetics Office

We're here to help you take a proactive approach.

Concerned about your family history and cancer risk? We offer genetic counseling and testing to help you make informed medical decisions.
651-326-7610

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Frequently Asked Questions

Q: How can genes affect cancer risk?

A: Each cell of the human body has around 25,000 pairs of genes. Genes are the instructions that tell our body how to grow and develop. Some genes help decide your hair and eye color, while other genes work to help prevent cancer. In some families, mutations or problems in these genes are passed from one generation to the next, increasing a person’s risk to develop cancer, and at a younger age.

Q: What is genetic counseling?

A: Genetic counseling involves meeting with a genetic counselor who has specialized training in medical genetics. The genetic counselor will collect a detailed personal and family history and provide an assessment of your cancer risk. The genetic counselor will also determine whether genetic testing is appropriate and, if so, which test(s). If you choose to proceed, the genetic counselor will arrange for testing and help you and your family members understand the results, which can be complex. Genetic counselors also have training in psychosocial counseling to help navigate the unique family dynamics, emotions and complex decisions that sometimes accompany genetic testing and inherited risk for cancer.

Q: How can genetic counseling and testing help me?

A: For individuals that have already had cancer, genetic testing may help to clarify your chance of getting a new cancer (including the same type or even a different type of cancer), so that your medical team can treat your current disease while also looking out for your future risks. For those newly diagnosed, results of genetic testing may impact decisions about cancer surgery or, in some cases, treatment.

For individuals that have not had cancer, genetic counseling and/or genetic testing can help evaluate how your risk is impacted by your family history.  Better understanding your risk for cancer will help to determine whether you may benefit from proactive measures, such as additional screening tests, preventative surgeries or risk-reducing medications. Likewise, genetic counseling and testing may provide reassurance that these measures are unnecessary for some. 

Test results and any recommendations for increased screening or prevention measures will be provided to your doctor so you can work together to implement a personal and effective care plan.

Q: How can genetic counseling and testing help my family?

A: Gene mutations often run in families. So, if you have an inherited risk for cancer, others in your family may, too. If a gene mutation is identified in you, the genetic counselor will explain the inheritance pattern and outline the information to share with your relatives. If you have had cancer, your testing may be the most valuable way to evaluate risk of a hereditary predisposition, not just for yourself, but for your family as a whole. Providing relatives with information about their risk can be a powerful tool to help change the occurrence of cancer in your family.

Q: What does genetic testing involve?

A: Genetic testing usually involves sending blood or saliva to an outside laboratory for DNA analysis. There are many different genetic tests available and the genetic counselor will discuss your options with you, including benefits and limitations of each. Results usually take around three weeks to receive once an individual provides their sample for testing.

Not everyone is a candidate for genetic testing and some people who are may decide not to pursue testing, or to take additional time to consider their options after meeting with a genetic counselor.  

Because genetic testing constantly evolves, some people with normal results in the past may benefit from updated testing with new technologies.

Genetic counseling does not always involve genetic testing. Even without a genetic test (or if genetic testing is normal), increased screening or prevention measures may still be recommended based on the cancers in your family.

Q: Who should consider genetic counseling and testing?

A: Individuals with a personal or close family history of any of the following may benefit from genetic counseling/testing:

  • Known gene mutation in the family (even in more extended relatives)
  • Breast cancer and any of the following:
    • Diagnosed at age 45 or younger
    • Diagnosed at age 50 or younger with a second breast cancer in the same or another relative, regardless of age
    • Diagnosed at age 50 or younger in an individual who is adopted or comes from a small family
    • Diagnosed at age 60 or younger with triple-negative pathology
    • Two other relatives (on same side of family) with breast, prostate or pancreatic cancer, regardless of age
    • Jewish ancestry
  • Other cancers:
    • Ovarian, fallopian tube or primary peritoneal cancer diagnosed at any age
    • Colon cancer diagnosed at age 50 or younger
    • Endometrial (uterine) cancer diagnosed at age 50 or younger
    • Renal (kidney) cancer diagnosed at age 45 or younger
    • 10 or more colon polyps (adenomas)
  • Rare diagnoses:
    • Male breast cancer
    • Medullary thyroid cancer
    • Paraganglioma/pheochromocytoma
    • Hemangioblastoma
    • Choroid plexus tumor
    • Adrenal cortical carcinoma
    • Retinoblastoma
    • Wilm’s tumor
    • Multiple Peutz-Jeghers or juvenile polyps

Relevant family history includes diagnoses in a parent, child, sibling, aunt/uncle, grandparent, niece/nephew or first cousin.

Keep in mind, this is an abbreviated list of indications for cancer genetic counseling/testing. Other features in a family may also warrant genetic counseling, including early-onset cancers, bilateral or multiple primary cancers, or a clustering of cancers among several family members. Anyone concerned about their risk for cancer is welcome to meet with a genetic counselor to more thoroughly assess their personal/family history.  

Q: Is genetic counseling/testing covered by insurance?

A: The genetic counseling visit is often covered by medical insurance, although there are some exceptions. You are encouraged to check with your insurance company to find out about your individual coverage and to contact our office if you have questions.

If you decide to pursue genetic testing, the genetic counselor will discuss the cost with you at your visit, since this will depend on your personal/family history and the exact test you choose to have done. The laboratory will then work with your insurance to obtain coverage and pre-authorization as needed. Some insurance companies require genetic counseling prior to genetic testing.

Q: Can genetic counseling/testing impact my health insurance coverage?

A: There is a federal law in place called GINA that makes it illegal for health insurance companies to use family health history or genetic test results as a reason to deny health insurance, or decide how much an individual pays for health insurance. Groups not covered by GINA generally have policies in place that provide protections similar to GINA.

Other types of insurance such as life, long-term care and disability are not covered by GINA or related laws.

Q: Who can I call with questions or to make an appointment?

A: You may contact the HealthEast Genetics Program at 651-326-7610. Appointments are available at St. John’s Hospital in Maplewood or Woodwinds Health Campus in Woodbury.

Major Developments and New Information in Cancer Genetics

  • Present: Research continues to grow around individualized cancer treatments that target the genetic error leading to their diagnosis, which may be an inherited gene mutation or a gene mutation that was acquired (i.e., not inherited but found within the cancer itself). Clinical trials are currently under way and broader access to these treatments is expected in the future. 
  • Present: Even broader genetic testing like whole-exome and whole-genome sequencing is becoming more widely used, although more so in areas of genetics outside of cancer.
  • Present: Interest in genetic testing for cancer continues to grow both for individuals with a personal and family history of cancer and those without. Insurance will usually only cover testing for those who meet certain history criteria but others may opt to pay out of pocket.
  • 2016: We know that hereditary risk for breast and ovarian cancer is not only the result of mutations in the BRCA1 and BRCA2 genes. Most multi-gene panels for breast and ovarian cancer risk now include around 20 different genes such as PALB2, CHEK2, ATM, NBN, BRIP1, RAD51C and RAD51D.
  • 2013-2014: Laboratories introduced multi-gene panels using new, advanced technology called Next-generation sequencing. This allowed laboratories to begin testing many different genes cancer simultaneously, rather than one at a time. As a result, testing can be done more quickly and at a lower cost.
  • 2013: A landmark Supreme Court ruling overturned a patent previously held by Myriad Genetics Laboratory on the BRCA1 and BRCA2 genes, which allowed testing to become more widely available. Some laboratories now offer this testing at a lower cost, although choosing an adequate laboratory involves more factors than cost alone.  
  • 2013: Angelina Jolie publicly shared her story of pursuing bilateral mastectomy after testing positive for a mutation in the BRCA1 gene. Women with mutations in BRCA1 or BRCA2 have several options to manage their increased risk for breast as well as other cancers. Some women will opt for preventative mastectomy like Jolie, while others will pursue more frequent breast surveillance. For Jolie, genetic testing was prompted by her family history of breast and ovarian cancer. 

Genetics support groups

People with hereditary cancer predisposition face unique medical challenges and complex decisions. Feelings of frustration or isolation may impact individuals and family members. The purpose of these groups is to bring together those facing similar challenges and to provide a forum to discuss the latest information.

  • The BRCA Information and Support Group is for women with a mutation in the BRCA1 or BRCA2 gene. This group meets once a month for 90 minutes, four times in the spring and four times in the fall, with an additional special summer family event. Meetings alternate between general support and in-depth discussion of selected topics.
  • A genetic counselor can help to identify other in-person or online support resources based on the needs for you and your family.

Contact Rachel for meeting dates or other questions.