I was diagnosed in April of 1998 at age 37. I am married with two adult boys. 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 OB-GYN. He let me know that I would likely have a transvaginal ultrasound to confirm the diagnosis.
I saw the OB-GYN in February and he agreed with the uterine fibroid diagnosis but said I didn’t need an ultrasound since he was confident I had fibroids – they are not uncommon at that age. We talked about options to deal with uterine fibroids. 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 laparoscopically-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 was NO fun when I passed out in a hotel room from a distinct, severe pain again on the left side of my abdomen. I called the OB-GYN 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.
When I returned from vacation I insisted on a transvaginal ultrasound. The OB-GYN 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 of weeks later for April 15th, 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 OB-GYN that day for an urgent consult. 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 OB-GYN agreed but recommended we keep the original surgery date of 5 days later and sent me home with Darvocet for pain.
After surgery, I woke up to 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 OB-GYN had removed the uterus, ovaries, fallopian tubes, appendix, omentum and 2 lymph nodes. The Medical Oncologist that was called in the day after surgery ordered a CA-125, which came in at 34 (at the high end of the normal range.) He recommended starting chemo in 5-6 weeks. I went to a Gynecologic-Oncologist for a second opinion and decided to undergo six rounds of Carboplatin/Taxol after that doctor recommended that I be treated as a Stage III case because of inadequate staging surgery.
Because of the inadequate staging surgery, my medical oncologist had to be persuaded to order 6 rounds of chemotherapy vs. the 3 rounds recommended at Stage I. In addition, I was a wreck not knowing if I had Stage I or Stage III disease. However, I tolerated chemo just fine physically and mentally with a lot of family, friend, and coworker support and have never regretted taking an aggressive approach to chemotherapy. I had a second look surgery in November of 1998 with no evidence of disease. I had a few more CT scans since finishing treatment in the first couple of years as well, all clean. My CA-125’s have all been in the 5-8 range.
Looking back, I wish I had known to ask for a Gynecologic Oncologist referral when my symptoms got worse so rapidly and certainly when my ultrasound answers were not satisfying. I feel lucky that I had attention-getting symptoms and a family doc who took them seriously.
I have some mild neuropathy and have played with hormone replacement therapy options, but currently, am coming off a synthetic estrogen that worked well for me. Not surprisingly, I also live with some “canceritis” anxiety that has me worrying about every little abdominal twinge, lump and bump.
My advice to any woman with abdominal symptoms is to not give up asking until answers are satisfactory. My request of hearthcare practitioners is to listen carefully and test thoroughly and to refer to a Gynecologic Oncologist if ovarian cancer is suspected. In addition to better outcomes for the patient if a Gynecologic Oncologist does the staging surgery, because I was not properly staged I’ve lived with additional, unnecessary anxiety because I don’t know what stage my cancer was at when it was caught.
I’m glad to be here after all these years to tell my story!
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