Living with Stage IV Ovarian Cancer

Medically reviewed by Ursula Matulonis, MD

By Maura Perkins

I can’t pinpoint when I started to get ovarian cancer symptoms. It was all very subtle and gradual. I was a healthy person. I ran, biked swam, hiked, and went to the gym regularly.

A slight pain in my left side, difficulty digesting food, feeling of fullness, and shortness of breath: those were the subtle constellation of symptoms that landed me in my primary care doctor’s office. At the age of 50, I felt like I was going downhill fast.

Maura Perkins
Maura Perkins

There was no history of ovarian or breast cancer in my immediate family. However, I had been concerned about my risk of developing cancer due to exposure to fertility drugs. My gynecologist had agreed to some basic monitoring by vaginal ultrasound every six months. An ovarian cyst was discovered and followed, but I was told it was benign.

The diagnosis

The official diagnosis – stage IV ovarian cancer – came on Mother’s Day, five years ago. Within three days I had major abdominal surgery. I awoke to a reconstructed bowel and many missing body parts, among them a 12-centimeter tumor. My mother moved in to help take care of the kids. I was given four weeks to recover before starting chemo. We were in shock.

I was always determined to recover and get on with my life because it didn’t look like it was going to be a long one. My children were ages 9 and 11, and I wanted to leave a lasting impression.

By an odd twist of fate I was allergic to one of my treatments and was referred to Ursula Matulonis, MD, and Judy Garber, MD, MPH, at Dana-Farber/Brigham and Women’s Cancer Center. With this team of doctors, who are part of the Institute’s Susan F. Smith Center for Women’s Cancers, I was able to safely get the standard treatment for my cancer every three weeks in spite of being allergic to one of the chemotherapy drugs. Over the next three years I had more surgeries, chemotherapy, and radiation. But nothing would work, and the cancer kept coming back. Each time I started a treatment cycle I felt like I was entering a tunnel.

The next step

In November 2011, as my cancer was starting to recur again, Dr. Matulonis told me about a clinical trial at Dana-Farber, offered at only a few places in the world. Thankful that it was an oral medication and wasn’t chemo, I enrolled. While working through the initial side effects with Dr. Matulonis and her team, we were all greatly relieved to see almost immediate and dramatic results on the scans. Not to mention, I was feeling pretty healthy.

The drugs continue to be effective. Every two months I have MRIs to monitor the progress of the disease, which is almost nonexistent on the images today. I have had what is considered to be a complete response to the treatment protocol. I am experiencing a great quality of life. I’ve travelled extensively with my family, completed the 50-mile Pan-Mass Challenge twice, and am active in my community. I feel like I have more energy, ability to focus, and to take on more things that I enjoy. Most people would not know that I currently live with cancer.

But how long will it last? As Dr. Matulonis likes to say, “Maura, you’re sailing in uncharted waters.” It is uncertain how long my current treatment will be successful, because no one really knows how long this combination of drugs will remain 100 percent effective. For now, I am grateful for my health and am getting used to the idea that I might actually live a normal life.