Beth Kupper-Herr

April 2021

Aloha from Hawaii! I might be the luckiest ovarian cancer survivor you’ll ever hear about. In February, I celebrated 32 years since my Stage IIIC diagnosis in 1989. Since then, I’ve had two recurrences, and if there’s one thing I’ve learned about this disease, it’s this: OVARIAN CANCER IS SNEAKY.

It was sneaky in 1989. I was 37 years old, living overseas, teaching in Malaysia. Back in the States for a visit, I decided to see an American gynecologist to find out if there were any wonderful new forms of birth control I could check out (there weren’t). During the pelvic exam, the doctor felt something on my ovaries that might be cysts. Following his suggestion, after I returned to Malaysia, I visited my regular gynecologist, a wonderful doctor whom women came from all over the country to see. A pelvic exam and follow-up ultrasound showed cysts on both ovaries. She scheduled a laparoscopy to remove the cysts. She told me if they were too large, she’d have to make a larger incision and do a laparotomy.

Because I was in a foreign country, some medical and cultural practices differed from typical American ones. During the 4 1/2-hour surgery, my doctor came out of the OR to tell my husband that she believed I had cancer on my ovaries and asked for his permission to do a complete hysterectomy; he gave his ok. After the operation was over, she emerged again and offered to show my husband what she’d removed from me. When he agreed, she brought out the organs on a metal tray and pointed to the white, grape-like substance that she told him was probably cancer. (I’ve always compared this to the mechanic showing you the old spark plugs he takes out when he tunes up your car.)

My doctor broke the news to me gently, while she held one of my hands and my husband held the other. She told me she thought cancer was likely, but that we wouldn’t know for sure until the lab report came back. As it happened, this took five days since the lab was closed for the weekend and then for the two-day Chinese New Year holiday. By the time my ovarian cancer diagnosis was confirmed, I’d had time to come to terms with the fact that I had cancer and that I no longer had the option of bearing children. (Although my husband and I had no plans to have children, we hadn’t ruled it out.) I wasn’t devastated, but I did feel a definite sense of loss. It just felt unreal to feel fine and yet have cancer cells inside me.

My cancer treatment was also different from most. To get state-of-the-art care, I became a commuter patient, traveling to a major U.S. cancer center, where my treatment was directed by a gynecologic oncologist. My doctor in the States evaluated my disease and directed the chemotherapy; I alternated between the U.S. and Malaysia for the six chemo cycles. I didn’t like losing my hair, but I was fortunate – I tolerated chemo well, stayed active, and was able to work throughout my treatment.

Fast forward to fall of 1991, less than 2 1/2 years after the end of treatment. Having moved back to Hawaii, I was seeing a gynecologic oncologist for monitoring. I was feeling fine but noticed subtle changes: I told him that I had gained a few pounds and my clothes were getting a bit tight in the waist. A pelvic exam revealed nothing, but an ultrasound and CT scan showed a small amount of fluid. Fortunately, he took these not-so-dramatic symptoms seriously and decided on exploratory surgery.

It seemed that the cancer had sneaked back: No masses were visible during surgery, but the pathology report showed microscopic spreading on my diaphragm, liver, and colon, and ascites in the pelvic region. Once again, I learned that OVARIAN CANCER IS SNEAKY. I found the recurrence more of a shock than the original diagnosis, since after my initial treatment, I had assumed my cancer story was over. It just seems counter-intuitive that ovarian cancer can recur when the ovaries are gone, but I learned that recurrence of advanced stage cancer is actually pretty likely. (This is, of course, why early detection is so important.)

Once again, it was chemo time. And once again, I was fortunate: those six cycles of chemo kept me cancer-free for 25 years! Along with my medical care, I joined a newly formed ovarian cancer support group which I still attend. Over time, I became a long-term survivor; simply by my presence, I gave other women hope that, in spite of the frightening statistics, this disease doesn’t have to be a death sentence.

However, once again, OVARIAN CANCER IS SNEAKY.

In May of 2016, I saw my gynecologic oncologist for my annual exam. It was 25 years since my cancer had recurred and more than 27 years since the original diagnosis. The exams had become a sort of bland ritual: the pelvic exam, the “everything looks ok” declaration, a brief polite chat in the doctor’s office, and off I’d go. But this time, it was different. “There’s a small red spot on the top of your vagina,” he told me. “When I poked it, it bled a little. Don’t wait a year to come back – see me in September.”

I’m not a worrier, so I didn’t spend too much time thinking about this. I felt fine, and enjoyed my summer travels. But when I returned for my September appointment, the spot was still there and my doctor recommended a biopsy.

The biopsy news wasn’t good: the spot was malignant, and a CT scan showed three small tumors, the other two on the liver. The late September surgery that followed was largely successful and gave me a 10 1/2″ incision. According to the pathology report, the tumors were the same type as my original tumors, way back in 1989. “How could it come back after such a long time?” I asked. “There were probably some dormant cells there all along,” my doctor said, “and something activated them.” Yep, ovarian cancer is a sneaky disease. It really helps to have an alert gynecologic oncologist.

Now it was time for my support group sisters to be there for me. They advised me – now a stranger in Cancerland – on post-surgical recovery and dealing with chemo. I worried about my stamina – last time I was 40, now I was 65 – but again, I was fortunate. I worked full time through my 18 weekly treatments, had only a few side effects, and maintained my energy and appetite. The chemo nurses were great, and my husband was unfailingly supportive. Chemo felt like a second job, keeping me busy with weekly treatments, weekly acupuncture, regular doctor visits, shots to boost my white counts, and relentless hydration. I did a lot of reframing: chemo drugs were lifesaving toxins; I was a healthy person with just a touch of cancer. I enjoyed rocking my headscarves, coordinating them with my outfits.

My 18^th and final chemo session was four years ago, and I’ve had many good CT scans since. I retired almost three years ago and have been enjoying life, even during these COVID times. I took our support group onto Zoom last May, and we still meet every month. So many women have asked what I did to survive this disease three times. I try to have healthy habits, but I honestly think I’m lucky to have had a Grade 1 tumor that responded well to chemo, and to have had consistently excellent medical care. I certainly don’t take my good health for granted. I’m done with cancer – for now. But it’s a sneaky disease, so I know it could visit me again. I just have to continue to see my doctor, take good care of myself, and be alert for any return of that sneaky ovarian cancer.