Dec 13, 2011 - 10:34 am
This is my first original post. I am 38. I was diagnosed with grade 3 endometrial cancer on Oct. 5th. I had a complete hystorectomy on 10/28. That was a long wait. My file was sent to one oncologist, a week later I found out she no longer worked at the clinic and no one notified me. Not an awesome way to start. In retrospect, I do consider that as a blessing, because my illness has turned out to be a bit more serious than first anticipated. I elected to go to Seattle Cancer Care Alliance.
After my hystorectomy, my doctor informed me two lymph nodes were enlarged and the cancer had invaded the cervix. The cancer had "eaten through" 1.7 cm of my 1.8 cm uterine wall. Unfortunately, my uterus was ripped during the davinci surgery. I feel like I can't blame the doctor at all because I was so close to utter disaster. The good news was the lymph nodes and washings had no cancer cells. "They" did however find an enlarged mass on my collar bone on my post-surgery CT scan. I was scheduled for a PET/CT scan on Nov. 30th. The results were mixed, to say the least. You know it's not awesome when your gynecologic oncologist from one of the top cancer centers in the country starts with "I don't know what to make of this." There were "hot spots" in two lymph nodes. One in the upper aortocaval region and one in the iliac region. They are stated to be "highly suspicious" for metastic lymph nodes. Luckily, the area on my collar bone was nothing and I had no masses anywhere else in my body. They did find faint uptake in a tiny area in my right breast. I am going to see the breast specialists, just to keep an eye on it. They do not think it is a tumor.
I guess my question is, am I Stage 3 now? My doctor says I am still Stage 2, but this doesn't sound good me. I start chemo this Friday. My doctor also says CA 125 is not reliable so we will not monitor my numbers. After my six rounds (three weeks apart) we will do another PET/CT scan. He also plans on radiation for me.
Needless to say, this is taking a huge emotional toll on my family. Especially my nine year old son. I've already cut my long hair off because that seems to be his biggest worry. He says it will remind him all the time that I have cancer. I thought giving him the opportunity to see me with very short hair might help him emotionally.
Of course, the news doesn't end there. My tumor also demonstrates genetic malfunctioning. I may have Lynch Syndrome. I have to have genetic testing to determine if I do.
I'm just looking for any advice, comfort. I also plan on starting the anticancer diet. I should say I am in excellent heatlh and had absolutely no risk factors for this disease, hence the genetic connection (perhaps).
Thanks for listening. I'm finding that even my very loving and supportive husband doesn't really like to talk about this with me and gets frustrated when I read these boards. Coping mechanism?
Thanks for listening,