New to board-10 year uterine cancer survivor

Hi everyone, I just found this board and thought I'd share my story. I wish a board like this had been around way back when I had my treatments.

I was diagnosed in November 1999 with uterine cancer (age 42). This was after more than 5 years (yes years!) of spotting between periods, heavy bleeding with clots and pelvic pain. I was convinced it was just pre-menopause symptoms and sought medical treatment much later than I should have--particularly since my mother had also experienced uterine cancer a few years earlier. Always see a doctor promptly when you have symptoms.


I was staged during my surgery. My cancer was FIGO Grade 1 Stage 2B Adenocarcinoma. I had a radical hysterectomy with removal of both ovaries and some lymph nodes (don't know how many). I then had the 28x external beam radiation treatment and 3 days in the hospital with a radioactive implant.

My cancer had spread well into the cervix and 50% into the lining of the uterus. There was a nodule on the outside of the uterus itself (non-cancerous but I think likely pre-cancer). The cancer had not spread to the ovaries, fallopian tubes, lymph nodes or anywhere else. The wash they took at the time of surgery was negative.

Chemotherapy was not part of my treatment plan although my radiation oncologist said it was an option if I wanted it. I decided to stick with the standard therapy--surgery then radiation. The only doctors I saw were my gynecologist who did the surgery and a radiation oncologist. I never had any CA 125 testing done (don't know if it was even available then).

10 years out I am healthy and fine. I make sure I get a colonoscopy every 5 years and my yearly mamogram/pap smear. I do have linger side effects from my treatment. I have a small bowel obstruction that flares up from time to time--typical complication of abdominal surgery. I have some adheasions from the radiation treatment that cause a small amount of intestinal discomfort and occasional irritable bowel. My bladder sometimes has slight irritation but nothing major. Because of the lymph node removal I get some mild swelling of both my legs and patchy discoloration on my skin there--unsightly but not a huge issue.

I don't know if I can ever be called "cured" but I wanted to tell my story to let all of you know that there are many long term survivors out there. We just never post to websites like this since it's been while since our treatment. It's not like you ever forget you had cancer--you just tend to get back into the routine of things and not seek out information anymore once you pass that 5 year post cancer mark.

When I had my treatment I took things one day at a time. I used my sick days from work which helped me cope with the fatigue from the radiation treatments. But once my treatments were over I went back to work full-time and it really helped to get back into a normal routine again.

I know many on this board are newly diagnosed. I found that learning as much as possible about my cancer helped me cope. It would have also helped me to have the support of others. I'm glad to see that groups like this are now easily found on the internet.

Anyway, I just thought I'd share my story, what I went through, and what I experience these years post-treatment. I hope it can help someone out there...