Genetic Counseling
In the last century, remarkable advances in science and medicine have given us the ability to test whether a person has certain genes that make them more susceptible to cancer. The most popular one by far is for BRCA mutations -- though the presence of a BRCA mutation is really involved in about 5 - 10% of breast cancer cases a year in the US, testing is certainly very popular because those who have a mutation are much more likely to have breast cancer than those who don't.
There can be clear advantages for family members of cancer patients to be tested: if a mutation is present, they might be more moved to practice vigorous prevention / screening tactics. The knowledge of having a mutation might also have an impact on family planning and cancer treatment regimens should they develop cancer later in life.
However, genetic counseling is often not covered by health insurance providers. Plus, some people just might not want to know.
Have any of you (or bloggers: any of your readers) had any experience with having genetic counseling for cancer done? What were the motivating reasons?
There can be clear advantages for family members of cancer patients to be tested: if a mutation is present, they might be more moved to practice vigorous prevention / screening tactics. The knowledge of having a mutation might also have an impact on family planning and cancer treatment regimens should they develop cancer later in life.
However, genetic counseling is often not covered by health insurance providers. Plus, some people just might not want to know.
Have any of you (or bloggers: any of your readers) had any experience with having genetic counseling for cancer done? What were the motivating reasons?
Replies to This Discussion
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Permalink Reply by Paula on -
Lesly,
I just read this MSNBC article about a woman who took the test you are referring to and found out she had an 87% chance of getting breast cancer before age 70 and a 44 percent chance of getting ovarian cancer. Her mother had breast cancer and eventually died from ovarian cancer at age 60. She had quite a decision to make and decided to have her breasts removed right away and by age 40 will also have her ovaries removed. She is currently 35 and wants children but unfortunately has not had a relationship pan out so she is going to a sperm bank to try to have a child before 40. She has wrote a book about her experience and the article does go a little into the genetic counseling component. I wanted to post a link to the article in case you haven't read it.
It is a tough decision. I have multiple relatives in my family who have had breast cancer. My grandmother being the closest as of right now. One of her daughters (my aunt) had both breasts removed without a cancer diagnosis. She had multiple benign tumors removed but they kept coming back. Since she has a strong family history she decided to have them removed. As far as I know she didn't get the test but it would be interesting to know what the results of the test would have been for her.
I couldn't believe the test is $3,000. I think insurance covered the test for the woman in the article, and I'm wondering if my insurance would cover a similar test for me. Definitely worth checking out. Thank you for bringing this to all of our attention.
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Permalink Reply by Lesly on -
Paula -- have you looked into whether an academic center close by is doing any kind of research studies involving genetic counseling? Depending on your family history and other eligibility criteria, you might be a good candidate for studies that look at the way that cancer run in families where you can get genetic counseling for free for research purposes.
A friend of mine had five instances of cancer in her immediate family and her sister chose to enroll in a study similar to this. My friend, however, chose not to. I think it really depends on what the person feels like they'll get out of it -- she didn't feel like she would live her life any differently if she had known whether she was a carrier for cancer or not, but her sister did.
If you don't have research studies available to you, definitely check with your insurance first. Genetic counseling does cost a lot of money, but my understanding is that it's not covered under many insurance plans because it is a preventative measure and not a treatment. Good luck!
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Permalink Reply by Paula on
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Newsweek is featuring an interview with a woman who had this test and decided to get a mastectomy and her ovaries removed because her test said she had a high probability of getting breast and ovarian cancer. She wrote a book about her experience and is talking to Newsweek about both. Click here to read the Newsweek article.
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Permalink Reply by Caroline on -
I was tested for Cowden's syndrome as I am considered to have many of the characteristics of it - cancers and other health issues. I came back negative for it but was told because of my medical history I am probably in the 20% that tests negative but does have it or a similar syndrome that would cause my medical issues. I did the test to see if I should be more vigorously screened in the future for other medical issues that are characteristic of it including skin and colorectal cancers. I did not tell anyone other than my husband (we have no children) so as not to provoke issues in my family. I have some family members who would over react and obsess over this type potential genetic effects.
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