My family life has been deeply touched by cancer. My mother is a 25+ year survivor of breast cancer, her father had cancer and like most of her siblings, they have some form of skin cancer or other cancer. It's a scary genetic pool to be swimming in. And I guess I should be thankful that I don't. I was adopted by my parents when I was just three days old. It has never bothered me. I have never not thought of them as my "real" parents. And I have never had an issue until now.
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| Yes, she is my REAL mom |
When my husband and I went to the OB/GYN twelve years ago to discuss our first pregnancy with our doctor, I asked about any genetic testing that we could do, since I have zero genetic history. My doctor told me that basically, I would be considered negative for any and all hereditary based abnormalities. This is the same thing that has also been told to me at my primary doctor as well. That is so frustrating. I am not happy to hear that I will simply be "let go" until I develop active symptoms or diseases. I have no idea what my genetic history is, and I am simply disgusted that the medical community has no proactive solution for the thousands of people who don't have that information.
When my doctor looked at me and told me this, I immediately asked him, "Then why do you take medical histories at all?" I work in the health care industry, and I can assure you that a patient's family medical history is extremely important. It can help shape your healthcare by narrowing down or opening up possibilities for your doctor. Cancer, blood clots, diabetes, heart disease and perhaps even autism, all have extremely strong familial, genetic components. Doctors should support knowledge. Knowledge is empowering for their patients!
Now learning about this testing for the BRCA gene, I would be very interested in being tested. Not only has my own family been touched, but two of our very close neighbors have developed breast cancer too. One of those wonderful ladies lost her battle with the disease. She had a family history of cancer. Of course we wonder if she had been able to be tested 10 years ago, would she still be with us. My own research into this testing has been frustrating as well. All of the sites list the same reasons for testing...close blood relatives with a history of cancer. Maybe I do? Maybe I don't? Unfortunately, there is no thought given to those with no history.
Angelina Jolie had the testing done and the subsequent surgery, so she could help assure her longevity to be with her children. As an adopted child, why am I not given the access to the same type of testing and assurances? Why do I have to sit and just wonder about what how my genetic past can harm my health care in the future?
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| What about their genetic risk for diseases? |
As I get older, I look at my own three children and have a great deal of sorrow that they too will have to move forward in life with half of their genetic history missing. With every breakthrough science makes with genetic testing, our doctors and insurance companies should allow those with missing genetic histories the access to this testing and any treatments that can modify risk. Afterall, my genetics are just as important as anyone elses...I just need some help to find them.
