Sunday, October 6, 2013

Qualifying for BRCA Testing & Family History

Now I've had many friends ask me how they would go about being tested for the BRCA 1 or 2.

Like many of you, I had never heard about the BRCA1 (or 2) gene mutation a couple of years ago. But I was contacted by my Aunt asking if my dad had told me about a recent test her and her daughter had had that both were tested positive for....of course without any communication with my dad I knew nothing about it. Immediately my sweet cousin emailed me her test results indicating that these results would help my doctors local the same mutation in my genetics. I didn't feel an urgency to figure out what was next quite yet.

However, I started with my OB/Gynecologist and he was NO help really. I went in for my yearly exam and informed him that my Aunt and Cousin had been tested positive and would this be something I should be concerned with. He said probably not so much since it was my dad's side of the family. So I let it go until I returned the following year. I brought it up again but this time to his female PA. She said it's a myth that you cannot get breast cancer through your dad's line and immediately told me about the Huntsman Cancer Institute and their genetics counselors. So I did what most of us do, I tucked the information on the sticky note into my purse and promptly lost it.

But it wasn't until my sweet friend that was facing Stage 3 Breast Cancer were talking. I mentioned I was needing to be tested for BRCA1 and she immediately told me how simple it was and gave me the name and number of the awesome guy at the Family Risk Assessment Center at the Huntsman Cancer Institute that would schedule me an appointment.

I figured if she could bravely face her challenging future, then I could suck it up and get tested. I called finally and made the appointment.

So from what I understand, you have to meet with a Genetics Counselor to assess if you are at risk based on family history. Huntsman does not charge you for this meeting, it's a service they provide. They had me fill out a Medial History and then Family History that is specific to the history of cancer in my family. 

After she reviewed this information and then met with me, she informed me that I qualified for the test. It required a simple blood draw and them shipping it off to a lab to test. I was told that "most" insurances will cover most of the cost of the $475 test and before I left we learned that my insurance would cover all of it (wahoo)!

Then you wait to learn the takes 2-3 weeks.

Here's some things people THINK they know about cancer...
  • You cannot get cancer from your father or his your father's side of the family = MYTH
  • Breast Cancer skips a generation = MYTH

Family History
This is a very rough outline of the cancer that runs through the Larsen side of my genetics. I cannot say it's completely accurate, but it paints a pretty good picture.

My Grandmother (Father's Mother) - Breast cancer on one side and she was in her late 60's when first diagnosed. She had a lumpectomy, no chemo, She didn't have any recurrence or new cancers during the rest of her lifetime to I believe age 81.

Aunt 1 (Father's oldest sister) - She had cancer on the right side the first time and had a complete mastectomy only on the right side. A few years later she developed breast cancer on the other side (new cancer, not a recurrence) and had the other breast removed. However, due to lack of insurance and how far along the cancer was the second time it spread to other parts of the body and eventually is what killed her at age 69. (Oh how I loved her and miss her.)

Aunt 2 (Father's sister) - She had breast cancer in the right breast the first time (age 42 or 43) and a partial mastectomy and removal of the lymph nodes. Several years later she was diagnosed with stage 3 ovarian cancer (which they almost missed) and underwent complete hysterectomy. More recently she had breast cancer again on the right side again, but due to genetic testing she had a double mastectomy. None of her cancers were a recurrence of previous cancers, all were new presentments.  

Aunt 3 (Father's youngest sister) - She had a really aggressive form of breast cancer that presented only on one side. However, due to how aggressive that type of cancer is she had a double mastectomy. She was around 42 or 43. 

My father has one other sister that hasn't presented with any cancer that I'm aware of. He has a brother as well that I believe was recently diagnosed with thyroid cancer, but I was told that has nothing to do with the BRCA mutation. His daughter was tested for BRCA1 and tested negative. Just to clarify...there is no breast cancer on my side of the family to date.

You might find this infographic helpful. I am a visual person so I like colorful charts. You can click here to view it larger

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HELLO....I appreciate you reading about me and my experience with BRCA1 and "everyday life". Thank you for taking the time to comment in the positive (but if you want to be negative I invite you to go read someone else's blog).