There are many reasons why I am doing this blog. First of all, it helps me cope with this whole situation. I am happy that I got to choose to have this surgery, I got to choose to have a nipple sparing and skin sparing mastectomy, I got the choice to have genetic testing BEFORE I got cancer. The other main reason is to make a difference and educate others on genetic mutations and the importance of getting tested.
How did I decide to get genetic testing? Our family history has a moderate amount of breast cancer, both pre-menopausal and post-menopausal women. If you think you potentially have a gene or want to be tested, contact a genetic counselor. This is what they are passionate about and are the professionals about genetics. I found a link where you can answer a few questions and see if you are at risk, this is just a tool and not a providers diagnosis:
Below is my family history:
- My Grandma Lynn (maternal) had breast cancer at age 32, who tested negative for BRCA about 6 years ago.
- My great grandma (maternal grandpa’s mom) had breast cancer in her 50’s.
- My mom’s cousin (my mom’s dad’s side) had breast cancer in her 50’s and melanoma.
- My dad’s side doesn’t have a huge cancer history. My grandpa (paternal) had prostate, colon and thyroid cancer but those were all when he is older.
- My mom had changes in her breast tissue but nothing worrisome to biopsy and one of the radiologist (Dr. Neubauer at the Providence Comprehensive Breast Center) told my mom that with her family history, that she should have My Risk Panel testing, which she obviously came back positive for. Since my mom came back positive Joy decided to test me only for CHEK2, not the whole panel and I came back positive (obviously!) https://www.myriad.com/patients-families/genetic-testing-101/overview-2/
I have met a few different people in Washington that had testing, found out that they had a gene or variant of a gene but never met with a genetic counselor. They had no idea what to do with these results. When consulting a genetic counselor, they help you through the process, they get you set up and pointed in the right direction for your future care. I just feel sorry for all of those people because before being tested you really need to be prepared to test positive. If you are negative you go on your merry way and live your life. If you are positive, you need to make decisions, not only for yourself but for your family. If you are in the Snohomish County area, Joy and Cheryl are the genetic counselors at Providence Comprehensive Breast Center, (they do testing on men as well, even though it is at a Breast Center), these ladies will take care of you and let you know if you are eligible for testing.
I feel so lucky that my mom and I have had the health care system we have had through this process. Providence in the past year has implemented a high risk breast cancer program. These patients and their cases are discussed in a conference (surgeons, pathologist, radiologist, genetic counselors), the women’s options, and what providers will need to see them. The communication throughout the providers and institutions is superb and patient care is great. My providers know me, my medical/family history, and support my decision 100%.
So if YOU or someone you know has a strong history of cancer (not just breast cancer) have them schedule a consultation with a genetic counselor to sort through ALL of the family history. You can save your life or someone else’s! December 4th is coming up quick…