I was diagnosed in April of 1998 at age 37. I am married with two children, boys ages 19 and 16. I have no identifiable risk factors.

In January 1998, I noticed that I had been having some heavy periods, and upon further thought realized I had been bleeding off and on for a few months. I went to my family doctor in late January. He examined me, and did a pregnancy test when he found that my uterus seemed to be enlarged. When that came back negative he said he thought I had uterine fibroids, but referred me to an ObGyn. He recommended that I have a transvaginal ultrasound to confirm the diagnosis.

It took 3 weeks or so to see the ObGyn - I was in no hurry. The ObGyn concurred with the uterine fibroid diagnosis, but said I didn't need an ultrasound. We talked about options to deal with uterine fibroids. He had great bedside manner; he offered to have me call him with questions at any time. After I had a very painful episode on March 1 (intense pain on my left side that would not subside for over an hour) we decided on a laproscopically-assisted vaginal hysterectomy.

Shortly afterward, my abdomen started swelling substantially and I was in increasing pain. I had night sweats and fever, and a vacation at the end of March almost ended at the emergency room when I passed out in a hotel room from a distinct, severe pain again on the left side of my abdomen. I called the ObGyn who was sympathetic but told me that fibroid tumors often had these symptoms if they outgrew their blood supply quickly and/or twisted and that it probably meant we needed to proceed with surgery as soon as possible. It was scheduled for April 15th.

When I returned from vacation I insisted on a transvaginal ultrasound. The ObGyn complied and did one in his office, saying that although he could see a healthy-looking right ovary, he couldn't see my left one. He assumed that it was obscured by the fibroids in my uterus. I was uncomfortable with this answer and asked if it could be cancer, but he said he was 99% sure it was not. Since the surgery was already scheduled for a couple weeks later, I didn't press.

When I went back to my family doctor for a pre-op physical the week before surgery, he was visibly upset. I was barely able to walk upright due to abdominal pain and swelling and he sent me back to the ObGyn that day for an urgent consult. I overheard him in the hallway on the phone with the ObGyn and he did not sound happy. My family doc said I appeared to be full of fluid and he did not think a laparoscopic procedure was appropriate. At the consult the ObGyn agreed, but recommended we keep the original surgery date of 5 days later since it was the Easter weekend (and I'd be getting the back-up OR and nursing staff) and sent me home with Darvocet for pain.

After surgery I woke up to a bikini cut and a Stage 1-C diagnosis - Epithelial adenocarcinoma of the left ovary - tumor was 17 cm at greatest dimension, extensively necrotic, appeared to be encapsulated, but with malignant cells in the washings. My uterus and right ovary were normal. The Medical Oncologist that was called in the day after surgery ordered a CA125, which came in at 34. He recommended starting chemo in 5-6 weeks. I decided to get a second opinion and ended up undergoing 6 rounds of Carboplating/Taxol after the doctor there recommended I be treated as Stage III because of inadequate staging surgery.

I tolerated chemo just fine physically and mentally with a lot of family, friend, and coworker support. I had a second look surgery in November of 1998 with no evidence of disease. I had two more CT scans since finishing treatment in the first couple of years as well, all clean. I have been followed for the last 9 years with all CA125's in the 5-8 range.

Looking back, I wish I had asked for a referral to a gynecologic oncologist when my symptoms got worse so rapidly and certainly when my ultrasound results were not satisfying. Also, I should have asked for a CA125. I'm just lucky that I had attention-getting symptoms and that my family doc was so supportive.

My GynOnc, family doctor and I have struggled to get my hormone replacement therapy just right, and I do live with “canceritis” anxiety that has me worrying about every little abdominal twinge, lump and bump. It also bothers me that I will never know if I had Stage I or Stage III disease; the difference in likelihood of recurrence is significant. But overall I’m great and happy to be here to share my story!