Hereditary Ovarian Cancer

Some people battling cancer got the disease not by random bad luck, not by straight environmental exposure to carcinogens, but because they got a bum gene from a parent. This mutated gene might throw off mutated cells that become cancerous. These people have hereditary cancer.

If there is a lot of cancer in your family, you may wish to get genetically tested to see if you have a mutated gene. Knowing this can help you make decisions that might allow you to avoid getting cancer in the first place. If you already have cancer, it can help guide your treatment path. It can also help to find others in your family that might have the same gene so they can make those informed decisions, too.

The gene mutation that is associated with a higher risk of breast and ovarian cancer is called BRCA (BReast CAncer). There are two main subgroups called BRCA1 and BRCA2. Certain groups have a higher chance of having the BRCA gene. Jews of Ashkenazi descent are one of those groups. The National Cancer Institute explains extensively the facts associated with genetic testing and the risks of being BRCA positive.

What is it like to get genetic testing?

If you go to a hospital, you will meet with a genetic counselor who will interview you about your health and the cancer history in your family. She will discuss with you what the lab tests for, when the results will be back and she will probably want to set up a meeting to review the results with you when they come in. She then takes a test tube of blood, and send to a lab, like Myriad Labs. The results typically take about two weeks.

You need to check with your insurance company to see if this test is covered. If someone close to you has breast or ovarian cancer or has tested positive for the BRCA gene, this testing may well be covered. If not, you may have to pay out of pocket. The genetic counselor can give you information on cost. The cost will be linked to how much testing you need to get done. If the lab can test for a specific BRCA mutation (like for the Jews of Ashkenazi descent) then it might cost less than doing the test for every single BRCA mutation. Currently, Medicare does not not cover the cost of genetic testing. Medicare coverage for genetic testing is one of the action issues CancerDancer is working on.

There are also private labs like 23andme that offer less expensive testing but they test for fewer sites of BRCA mutation. So, if you are descended from Ashkenazi Jews, this test would look for the most common mutation and be helpful. But if a client has a more rare mutation, their test might not catch it.

Tests typically request a saliva sample. Genetic testing can provide a great deal of interesting information, including risk factors for multiple diseases and the efficacy of certain drugs. Be sure to get specific information about the test and what is included in the report before choosing a genetic testing service.

What if I am BRCA positive?

If you are BRCA positive, you will likely have a long discussion with your genetic counselor about what your increased risks are actions you can take. You may wish to consult a gynecological oncologist for some of these discussions.

BRCA-positive women generally have an 80% chance of getting breast cancer before their 70th birthday and a 40-60% chance of getting ovarian cancer. Depending upon your age and personal choice, you may decide to get more mammograms and/or breast MRIs. You may decide to have surgery to remove your breasts or ovaries. You will almost certainly discuss the findings with your family so that the people you care about can get tested and make these very personal decisions, too. If you have cancer, you may choose a particular treatment or clinical trial best suited to BRCA-positive patients.

The group Facing Our Risk of Cancer Empowered (FORCE) has books and data on the subject, as well as a support community.

Copyright 2012 by CancerDancer