By Marcia Mabee
Life was good for my husband, Tim, and me in the fall of 2007. We managed a small company Tim had founded. He provided medical publishing services for clients and I provided executive and federal representation services for non-profit public health organizations. We were able not only to support ourselves well, but also provide critical financial support for Tim’s 26 year old daughter who is severely learning-disabled. I, and we, had no other children.
Before leaving for a two week trip to Italy that fall, I had a virtual colonoscopy done because a regular screening colonoscopy had failed due to abdominal scar tissue. I had undergone a partial hysterectomy, the source of the scar tissue, fourteen years before, due to fibroid tumors. I had opted to keep my ovaries because my mother had developed osteoporosis following a total hysterectomy for fibroid tumors in her late forties. I also reasoned that we had no family history of ovarian cancer.
The virtual colonoscopy showed a clean colon, but it also showed a mass on my right ovary. The radiologist recommended a follow-up CT scan with contrast dye, which I had done the week before departing for Italy.
A few days into our trip a voicemail check found a message from my primary care physician to call her office as soon as possible. I called her nurse who told me that because of my recent CT scan, my doctor was referring me to a gynecologic oncologist. This, naturally, cast a pall over our otherwise delightful vacation. I made an appointment with the specialist for the day after we returned.
The gynecologic oncologist examined me, including a rectovaginal exam which was normal. He told me the CT scan showed I had a small mass, 1.5 centimeters on my right ovary. He then asked me a series of questions about symptoms: was I experiencing any abdominal or pelvic pain; any sense of bloating; any difficulty eating; urinating. How did I feel overall? I replied that I felt very well and had none of these symptoms. He then said we could go one of two ways: the radical route involving major surgery in which he would remove both ovaries, the omentum , and biopsy a series of lymph nodes; or, the more conservative route of watch and wait. He then said he recommended the latter since the mass was very small, there was no fluid accumulation in my abdomen on the CT scan, but I clearly had a lot of scar tissue and doing major surgery would be difficult and therefore more risky. He felt there was every possibility the mass was a benign cyst, not cancer. He said watchful waiting would involve taking a blood test, a CA-125 test. If it was elevated, we would re-evaluate. He also wanted me to do a transvaginal ultrasound in three months and then said sternly that ultrasound, not CT scan, was the appropriate evaluation tool for ovarian cancer.
I left his office in a state of fear and high anxiety. What should I do? I called my sister who is an experienced nurse for help. She strongly urged me to do the surgery warning that ovarian cancer is one of the “bad” cancers.
I looked it up. The statistics are frightening. One stood out -- the five-year survival rate is only 45 percent. And I learned something else – the CA-125 test is practically useless as a screening test for cancer.
Nevertheless, I had my CA-125 test done. It was 25, well within the normal range of 1-35, but now I didn’t trust that. I went back to see my specialist and this time I really pressed him to convince me that his recommendation to watch and wait was best. His final response settled it for me: “I do not believe you have cancer and I have never been wrong.” This man was nearing retirement, had excellent credentials including a long list of publications in the field of gynecologic cancers. I felt satisfied that watch and wait was the right approach.
Three months later, I had a transvaginal ultrasound done. As I was dressing after the test a very unusual thing happened. The radiologist reading my films came into the exam room in person. He said the test showed a sizable mass on my right ovary. He said it had developed lobes and a blood supply. He felt my gynecologic oncologist should do something about it, at least a biopsy. I asked, “Has it grown?” He answered, “I can’t tell. I can’t compare a CT scan with transvaginal utltrasound – it’s apples and oranges.” I remember wondering why my specialist had not ordered a transvaginal ultrasound back in October to provide a baseline.
Somewhat alarmed, but feeling I was in good hands with my specialist, I left on a planned trip to Denver, Colorado. This was a business trip for me, but I had just turned 60 so Tim came with me and after completing my meeting, we spent two days hiking in Rocky Mountain National Park on pristine snowy trails. When I got back to the hotel and checked in with the office, I had an ominous voicemail from my specialist. He wanted to see me regarding my recent utltrasound.
As soon as we got back home I went to see him. Now he told me that he recommended surgery. This irritated me. Back in October I could have done it easily – my schedule was lighter, but January through May is the busiest time of the year for me and since we operated a small business, there was no one else to take over for me. I said, “If you think this is cancer, I will drop everything.” He replied, “I don’t think you have cancer, I think you have a cyst, but cyst’s can be troublesome so I think it should come out.” I said, “I will do the surgery, but I would like to schedule it as soon as possible after the worst of my crunch ends on March 5th – two more months.” He said fine.
I scheduled the surgery for March 10th. Part of my pre-operative work-up included a repeat CA-125. It was 20, five points lower than before. During the exam, my specialist asked me again about symptoms, but I continued to feel fine. So he said to me, “I am 95% sure you do not have cancer.” Tim and I were so relieved with this pronouncement that we went out to a favorite restaurant for dinner to celebrate.
I nearly cancelled the surgery. My specialist was 95% certain I didn’t have cancer; I was still very busy with work. Fortunately, I didn’t.
The outcome: Stage IIIC serous epithelial adenocarcinoma of the fallopian tube and ovary. The primary tumor my surgeon removed was 6.5 centimeters, the size of a lemon. The cancer had metastasized to the other ovary and fallopian tube, the omentum and one nearby lymph node. I’m 8-1/2 years post treatment and doing well!
Marcia Mabee is the author of Naked Mountain, her award-winning memoir about owning a property in rural Virginia that became one of the state’s dedicated natural area preserves. The book takes a dark turn when she is diagnosed with late stage ovarian cancer and just as her prognosis brightens, her hopes for the future are thrown into the depths of despair. Naked Mountain is an amazing personal journey that explores the joys of discovery, the uncertainties of life and the enduring bonds of marriage. Learn more about her inspiring story at http://amzn.to/2qQh0gM