I know genetic counseling can be controversial. Some people would rather not know. Others not only want all the information, they're willing to take drastic measures to cut down the risk of disease. I'm in the second group. I want as much knowledge as possible and I want to take all preventative measures. I'm willing to endure temporary discomfort to better my future.
If you are group A - you can stop reading now, this one isn't for you. The rest of you, buckle up, this one is important.
Cancer has unfortunately become all too common for many of us and our families. My family is not immune to this. Because of that, I've decided to become informed about my risk for this horrible disease.
Genetic counseling is a process used to evaluate and understand a patient or relative's risk of an inherited medical condition. Genetic counselors advise of the probability of developing or transmitting the disease and options open to management and family planning.
Simply put: your genetic counselor is someone who works with you to determine whether or not a disease is genetic, the likelihood of you developing it in your life, and how to react to whichever outcome is determined.
As a side bar - healthcare can be expensive. Financial factors often play into our decisions in preventative medicine. My insurance covers genetic testing if I follow the recommended process. As I walk through my experience, I will note financial implications. Please make sure before you go through genetic counseling to reach out to your insurance company to find out what your options are.
I made my appointment with Baylor Health Cancer Center here in Dallas, Texas after my primary care physician recommended I meet with a counselor due to the heavy presence of cancer on both sides of my family (this means I only had a copay for my one hour initial consultation).
Prior to my appointment I filled out an extensive family history for both sides of my immediate family. Everything from ages to age of cancer diagnosis to results of their genetic testing was on this questionnaire. When I arrived for my appointment this document was relied upon to give initial recommendations for testing.
When I arrived to meet my genetic counselor she explained to me in detail the latest discoveries in genetic testing as well as step by step what to expect from my appointment. Ultimately she decided that the best route to give me accurate results would be to have a familial member who currently or recently had cancer complete more genetic testing. From this we can determine whether or not the cancer is gene related. She explained that if I still wanted to get tested I could pay a lot of money (about $500-$1,000) and then even if I do test positive, that doesn't determine if I have a familial cancer gene, it could just mean I personally have a defect. But if I waited to find out results from my family member, we could determine more accurate information. The entire process at Baylor Health was easy and comfortable. From check in to meeting with my counselor, I feel lucky for the experience I have had.
I'm explaining this all very briefly - mostly because I'm not a doctor and every journey is unique. But I chose to wait and have my family member get further genetic testing before I move forward with any testing of my own. From here, when we receive her results we will be able to determine if her cancer is genetic or not. If she does show up positive for a genetic mutation - I will then get tested to see if the gene has passed down to me.
If I test negative, it does not mean I will not eventually be diagnosed with cancer. It just means I don't have the familial gene that gives me higher risk for the disease. And if I test positive it does not guarantee I will be diagnosed with the disease, it just makes it more likely. And within those 21 genes that doctors are currently testing, each can tell you about a different type of cancer within the entire cancer family. Again - these tests are informational, they do not guarantee you anything either way. Be cognizant of lifestyle factors as well as you're educating yourself.
I have thought briefly about what I will do either way. And while I can debate options all I want, I need to know results before I can consider anything. There are just too many outcomes to make an informed decision for my next steps.
The entire process is not short. It's intense, it's lengthy, and it requires digging out a lot of information. I'm only on step two But I left that appointment feeling informed and empowered. I'm excited to learn about my family genetic risk and what my options are moving forward.
For now - I wait! As I learn more, I will keep you posted on the implications. I'm very passionate about cancer research and education and while health is a very personal journey, I want to inspire others to educate themselves and seek preventative healthcare that works for them.
Stay tuned sequins...