I had my follow-up appointment with my oncologist and after reviewing my pathology report there were some positive numbers on it that increase my odds of surviving cancer. Perhaps moving it from 50% to a 60% five-year survival rate. Of course, these numbers are just a crap shoot and no one really knows.
Since this cancer doesn't respond well to chemo or radiation those are both off the table for now. I didn't know this but every cancer has it's own chemo cocktail. ULMS (uterine leiomyosarcoma) is so rare that it doesn't have it's own special chemo cocktail. They use what they think might work but so far the results haven't been good. If the cancer does come back, it will require more surgery and then they will attempt the chemo and radiation.
I'd read that this is such a rare cancer that often an oncologist might only see one or two cases of ULMS in their entire career. I asked my very young oncologist (maybe 35 years old) if she'd ever seen a case of ULMS or was I her first. I'm her third patient which she even said is pretty remarkable. She had a new diagnosis of one last week, Stage 4. No chance of survival. The cancer had mastasized into the woman's liver and they sent her home to die (she's in her mid-sixties). I'm very grateful that at least I have a chance of survival and a pretty good one too. Stage 1B is almost as good as it gets (1A would have been better).
My new lease on life is taking me to see a neuropath oncologist this morning that specializes in women's cancers. This is with the blessing of my traditional medical oncologist. The neuropath is suppose to be one of the best in the state of Washington and one of only three in this state that is a board certified neuropath oncologist. She focuses on nutrition and stress relief in order to build the immune system to fight cancer. Hear that cancer, I'm going to fight you with all I have in me!
I'm amazingly happy today. My sister-in-law (soon to be "ex" but I will call her my sister after the divorce..married to my husband's brother) went with me to my oncologist visit yesterday. She is a wonderful friend. The end of my marriage has renewed our friendship especially since we weren't able to see each other much for years because my husband and her husband barely spoke and hated each other. After the doctor we went shopping for me to get a "panty girdle". I haven't worn one of those since high school. My five-inch incision hurts if it isn't held in place. The hospital gave me a big elastic band to wear which is fine under PJs or a nightie, but doesn't work under clothes. Then we went to lunch, then a mani/pedi. We had a blast together. Laughing and talking and just enjoying each other's companionship.
Last night my manager came by and visited. We're not close friends, but it was nice of her to drop by. We talked and laughed. I made continual jokes about my cancer and death. Some people find my humor gruesome, but I think it's kind of funny that I have cancer. I mean, really, look at my life these last two years. You just have to laugh that on top of all that crap that now I have cancer. If you don't see the humor in that then you don't have a sense of humor. I find myself sometimes just giggling when I think about it. I mean, really God, do you think this is what it takes to get my attention? Okay, big guy, you've got my full attention now.
My manager was appalled at the online calculator I found for ULMS that can predict your survival rate. It's on the Sloan-Kettering Cancer Center website. I found it last week, but didn't have all the numbers from the pathology report to put in it and had to guess. Even then I came up with 57%. My oncologist told me yesterday she was going to tell me about it but I had already found it. That's where my oncologist got the 60% number. The doctors actually use this website to determine approprate treatment. Again, just a crap shoot. No one really knows.
Speaking of treatment for my cancer, there isn't any. My oncologist thinks the chemo or radiation would do more harm than good. If there are cancer cells that escaped prior to the surgery through my bloodstream then it's unlikey the chemo or radiation will catch them. Even though she thinks she got all the cancer with the surgery, there's really no way of knowing for sure. Tumor size is an indicator if the cancer will return even when they think the cancer has been completely surgically removed. A tumor larger than 5 cm is bad and the larger the tumor the great the odds the cancer cells have already spread. My tumor was 8.5 cm.
Enjoy your day and enjoy your life. Each day is a precious gift. Don't wait to enjoy life until you've been diagnosed with something like cancer.
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Posted by: Tukiyooo
A new lease on life Updated at :
6:40 AM
Thursday, April 25, 2013
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