In April of 2010 I was diagnosed with a granulosa cell tumor, which is a slow-growing ovarian cancer that starts in the granulosa cells that surround the eggs. GCT comprises only about 2% of ovarian cancers. I was 59, a semi-retired elementary school teacher, single, and living in my 1924 Westmoreland house with my four cats.
On Monday, March 22, 2010, I was riding my bike along the Springwater Corridor section that runs from Sellwood to SE Caruthers Street. I was working on a project involving feral cats that involved frequently getting on and off my bike. I had reached an area almost below the Ross Island Bridge when I suddenly experienced excruciating pain in my lower abdomen. I don’t know why I didn’t call a friend with an SUV to pick me up (and my bike), but I toughed it out and rode home in agony.
On the following Wednesday I called a gastroenterologist and described the symptoms. He had me come in immediately and attempted an internal scan, but the pain was so bad he couldn’t proceed. Suspecting I might have a C. difficile infection, he sent me home with a prescription for that.
On Friday afternoon his nurse practitioner called to see how I was doing. Hearing there was no improvement, she had me discontinue the C. diff medicine and arranged a CT scan appointment for that evening. Shortly after I returned home from the scan, the NP called again and very gently told me that the CT had revealed a mass and that she had set me up with an appointment with a gynecologist the following Monday. I was dumbstruck. My first words were, “I’m all alone.” She asked whom I would like her to call. I gave her the names of my two closest friends in Portland and specified that I didn’t need them to come over right then but that I wanted them to go with me to the gynecologist on Monday.
Offering to call friends was the most thoughtful and helpful thing the NP could have done. Hearing “mass” was the loneliest moment of my life, but when I knew those two friends would accompany me to the doctor on Monday, the sense of aloneness evaporated completely and never returned. I realize how blessed I am to have a strong network of caring and helpful friends.
Now here’s a funny thing that happened next. I was in excruciating pain from Monday through Friday and into Saturday. To take my mind off the medical situation, on Friday night I began watching a DVD set for a season of “Curb Your Enthusiasm”. An episode I saw Saturday morning was so hilarious that I repeatedly shook with laughter. My glasses were so blurred with laughing tears that I had to wash them before I could continue watching the series.
About two hours after my laughing spasm, I realized that the pain was gone – totally gone. And it never came back. Weeks later I discussed this experience with my oncologist. He theorized that the pain started because all that getting on and off the bike had caused the tumor to twist and press against my colon. The laughing spasm caused it to twist back to its original location, thus eliminating the pain. I was very lucky that I hadn’t started watching the DVDs two days earlier because, if the pain had been gone when the NP called, it would have appeared that C. diff was the culprit. Who knows when the tumor would have been discovered and what further inroads the cancer could have made.
In early April 2010 I had a complete hysterectomy. Chemo wasn’t recommended at that time because GCT is slow growing, and chemo is most effective on fast growing cancers. I almost made it to five years without a recurrence, but the tumors made themselves apparent again. On October 15, 2014 I had my second surgery. That time the gynecologic oncologist was able to remove the tumors via robotically assisted surgery with the DaVinci robot.
In the spring and summer of 2017 the cancer became increasingly active. The marker for my GCT activity is not CA-125; it’s a hormone called inhibin B, which is emitted by the cancer cells. It went from 240 in January to 500 in May and 1300+ in July. 1300 is the highest the lab test is able to measure. A postmenopausal woman who does not have GCT would have an inhibin B level of less than 15.
In August of 2017 a liver and pancreas specialist performed surgery to remove suspected tumors from my liver that turned out to be hemangiomas. What a relief! But the surgeon discovered a GCT tumor hiding between my liver and kidney that had never shown up before. After the removal of that tumor my inhibin B count went down to 900. Two months later my gynecologic oncologist performed a surgery to remove the tumors in my pelvic area. He found over 50 small tumors amassed in a grape-like cluster completely surrounding five inches of my colon, which required the removal of that section of colon.
Since the cancer had taken off so fast, the oncologist and I decided that it was time to give chemo a shot. I had six rounds of carboplatin and taxol. My final chemo was on March 4, 2018. The chemo slowed down the cancer but did not eradicate it. I am currently on Avastin and have been getting infusions every three weeks since October 4, 2018. The hope is that the Avastin will slow the growth of tumors because it inhibits the formation of new blood vessels. I experience no side effects from the Avastin; so I can keep taking it for years.
When GCT is detected and treated while still confined to the ovary, it often does not recur. However, it can recur up to 10-15 years later after the original treatment. Mine, however, had already metastasized into the pelvic area. I accept that this cancer can’t be eradicated but my goal is to slow it down enough so that I only need surgery to remove tumors every four to five years, rather than every three years.
I’ve met a wealth of remarkable women through the Ovarian Cancer Alliance of Oregon and Southwest Washington. The grace and courage with which they handle their disease, and the fullness they get from life is inspirational. We are fortunate to have the support and camaraderie offered by the Alliance.