There are so many brave, intelligent, articulate women out there and for each of you, a different take on the topic of genetic testing and preventive surgery.
I find this issue fascinating, perhaps because it was already on my mind when the Angelina Jolie story broke. Or perhaps because it touches so many of our lives and sort of joins us together in a way. We all fear cancer and we all carry the risk of getting cancer. One in the three of us will get some form of it and certainly all of us have had experience with cancer whether personally or with a loved one.
Yesterday I spent a couple of hours taking the online class required to submit my application for BRAC1 and BRAC2 gene testing. The class is followed by a brief test for which I received a certificate that I must mail to San Francisco. My packet is going into the post today.
Informative, insightful, interesting and at times, frightening, the class answered many questions I had about BRCA testing and many that I didn't.
Given enough time, I could write a very lengthy post about all that I learned. Instead I want to tell you a few things that stand out in my mind and that may be of interest to you.
~ First, the BRCA test is not as cut and dry as you might think.
I may test negative for BRCA1 and BRCA2 but that does not mean I don't carry some other gene mutation for hereditary breast and/or ovarian cancer.
There are dozens of other undiscovered genes that cause hereditary breast cancer that are thought to cause between 30 - 70% of all hereditary breast and ovarian cancers. It's entirely possible that there is a third BRCA gene, yet to be detected.
Here I thought I would have my choice of either:
A) Yes, you have the BRCA gene mutation and have an X% of getting breast cancer and a Y% of getting ovarian cancer.
B) No, you don't have the BRCA genes. Your risk is low. It's the same risk that most people have for sporadic breast and ovarian cancers.
These are the real choices:
A) Yes, you have the BRCA gene mutations.
B) No, you don't have the BRCA gene mutations but because of your family history you may have some other gene which would increase your chances for breast and ovarian cancers but we are not capable of identifying them right now.
~ Second, there are other measures that can be taken toward prevention that don't include surgery. MRI scans, chemotherapy and lifestyle changes are a few alternatives to a mastectomy and/or oophorectomy (ovary removal) for those with hereditary risks.
Should I get to the juncture in this process where preventative steps need to be taken, all options will be explored before making a decision. Drastic surgeries are, of course, not to be taken lightly.
~ Third, the hereditary genes for breast cancer and ovarian cancer can be passed down from both of your parents, not just your mother. Of course, this makes sense but I think it's more common to always look at the mother's family history since these cancers are found mainly in women. Your father's family history weighs just as much as your mother's. It's helpful to know as much as you can about both.
~ Lastly, I think it's important for everyone to know about Myriad, the company that administers and carries the patent for the BRCA tests. The patent is the reason they can charge such a high price, about $3500, which in turn makes it too costly for many women to have unless their insurance is willing to pay for it.
And there is a suspicion, brought to my attention by a reader, that the statistics having to do with risks of cancer in those testing positive for BRAC genes are inflated.
Currently, the Supreme Court is reviewing whether companies such as Myriad can continue to hold a patent for the procedure of taking the genes out of the human body to research. It's an interesting and important case that is worth following. You can read more about it in this article.
Rather than worrying myself needlessly with the unknowns and trying to predict what I would do in every possible situation - which is frankly exhausting - I am going to actively choose to take things as they happen.
My first step of taking the class is complete. Now I wait up to two weeks for a genetic counselor to contact me regarding an interview. There is no guarantee that I will get the test and there is always a chance that after speaking with the genetic counselor I will decide not to take it. I doubt that will be the case but I cannot rule anything out.
I know this isn't the sort of post you expect to see on The Rich Life but it's an important topic to so many people, including me, that I thought it warranted further exploration.
I plan to be back by the end of the week with a much lighter topic but in the meantime,
what are your thoughts?
Does this additional information change your perception of the BRCA test?