Wow, this picture makes me look really overweight. LOL! Maybe I should have cropped it to waist up? Well, I'm working on it. Can we say that the camera adds 10 lbs so it really looks like I'm 20lbs over my college weight? Sigh... I'll explain why I'm using this picture. Just keep reading.Anyway, I digress. The above picture was taken at Universal Studio in Orlando. I was there for the FORCE conference and arrived a day early to check out Harry Potter. FORCE stands for Facing Our Risk of Cancer Empowered which is for hereditary breast and ovarian cancer. Back in 2007 I finally got tested for the two known mutations to cause breast and ovarian cancer. This test would help me decide whether or not to have a prophylactic mastectomy. A positive result of the BRCA1 or 2 gene will increase risk of cancer in the other breast and ovarian cancer. My test came back inconclusive. I was BRCA1 with a variant of uncertain clinical significance. This means I may or may not have the gene. This variant was seen in a total of 3 Asians (I'm the third) making it a small sample population. This is the reason why I'm a part of the ACLU vs Myriad case because Myriad, the company that does the testing, holds a patent on the BRCA1 and 2 genes. No further testing can be done until the patent is uplifted. There for no further testing of my variant to truly know if I'm positive or negative. If you recall I've been treating myself like I'm positive for the mutation.
I meet some big guns at the conference. 1. Dr. Steven Narod is the Canada Research Chair in Breast Cancer in Toronto. He works in the Familial Breast Cancer Research Unit. I was fortunate enough to have some one-on-one time with him and ran my situation through him. What he told me surprised me though it's something my current oncologist and gynecologist have been telling me: It doesn't seem as if I have the BRCA1 mutation. I love my oncologist and it's not that I didn't want to believe her but I guess I'm in such a proactive mode that I would err on the side of being precaution. Dr. Narod said that most variants of uncertain clinical significance is negative. My family history isn't strong enough to convince him that I'm positive. (Even with my mother's mysterious family history.) 2. Dr. Karen Lu is at MD Anderson in the gynecologic oncology unit. I also ran my scenario by her. She doesn't feel as if I have the mutation either, even with my mother's mysterious family history. Though my mother had a hysterectomy about 15 years ago and who knows if that lowered her incident? We will never know. 3. Dr. Diljeet Singh is the Co-Director of the Northwestern Ovarian Cancer Early Detection and Prevention Program in Chicago. She doesn't see me as a clear BRCA1 mutation.
So..."I feel as if there is a cloud over my head." I really want to know for sure but I guess we won't know for sure, at least anytime soon with the patent in place for another 5 years and the entire case can take up to another 4 years. I guess I feel some relief but the key word is some.
I spoke more with Dr. Lu because my oncologist wants to do something with my ovaries since I'm estrogen receptor positive. Dr. Lu said the ovary removal or suppression would be to treat me for a breast cancer recurrence NOT ovarian cancer. I have the same risk as anyone else out there to develop ovarian cancer. She recommends medically induced since it's reversible like Lupron to shut down my ovaries temporarily.
I will post notes from the conference once I write them up.
