Thursday, November 22, 2007

I have a "Variant"

It's Thanksgiving and I have many, many things to be thankful for. I need to constantly remind myself of that. Ironically, I have my health.

I have been having pelvic pain and I naturally think I have ovarian cancer. I had migraines this summer and I thought I had a brain tumor. My oncologist and her nurse must love me. I call them nonstop and ask them my 101 questions.

My school insurance did not cover my genetic testing so I decided to wait until I switch jobs. This insurance does. It's still very expensive but not the $3100. After four weeks, four long weeks I finally got my results. I'm BRCA 2 negative. A yea on that one. However, I have a variant on my BRCA 1. I was told that all those that tested positive for this variant were Asians and it seems to be of no concern. The variant is of "uncertain significance." I researched, okay, I only Googled this variant but I found very little information about it. There's an article concerning women in Shanghai and then random articles. I spoke with the test center there and asked them how many people they tested. They said three and all three were Asians. That's a very small sample population and I made that third person. They were not able to tell me how many Asians they tested either. So...my test is inconclusive. I'm negative several thousands and the test was inconclusive.

Let me explain the significance of this test. The genetic testing allows us to know if we have a mutation called the BRCA1 or BRCA2. These mutations put us at a greater risk of getting breast cancer, a recurrence, ovarian cancer or other cancers. Most women that test positive tend to get a bilateral mastectomy and then a oophorectomy.

In January I was planning on giving my reconstruction a second try. Depending on my test result, I was going to get a bilateral if it came back positive. One minute I want to have a bilateral so I won't have to worry about lumps or have any regrets in the future if I had a recurrence. The next minute I fear having another surgery to remove a body part. Also, if I can have a child, it would be nice to be able to breast feed my child. I fear my reconstruction not going well again. I fear my lack of mobility and the pain. I fear having to "start over again."

This variant that everyone seems to find insignificant really upsets me. I now have to make a decision based soley on my own. I have to live the repercussion all on my own. Granted, I need to be grateful that I can make this decision. Some women come back a clear cut positive. I need to get over it. I need to weigh the pros and cons and not to have any regrets. Anyone out there that is Asian, have BC and has a BRCA 1 variant should e-mail me. Sigh.

Okay, that's enough self pity for me. It's cold today. Sammy is pestering me to play and adore him. Happy Thanksgiving and let me know if you have a variant!

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