Article
Kim Zukerberg, Ovarian Cancer Clinical Trial Participant
By Lindsey Elliott|Dec 30, 2022
Ovarian Cancer Diagnosis
In the spring of 2013, Kim Zukerberg visited her primary care physician and her gynecologist for routine physicals, leaving with a clean bill of health. Shortly after those appointments, Kim found herself experiencing what she thought might be symptoms of menopause, including painful stomach aches. Her doctors didn’t believe the symptoms were urgent, so Kim waited several weeks for an appointment. When she was finally examined, her doctor ordered a vaginal ultrasound, and the scans came back with a mass. Rather than waiting for a CAT scan scheduled a week later, Kim made the decision to go to the ER, where she knew they would see her immediately.
“They scheduled me for explorative surgery to find out what was happening on a Saturday. When I woke up on Sunday, I was told I had an advanced stage of Ovarian Cancer 3C,” Kim recalls.
Beginning Chemotherapy Treatment
After her diagnosis, doctors rushed to stop the cancer from spreading further. Kim had a bowel resection, hysterectomy, and both ovaries removed. While recovering in the hospital from surgery, Kim began to prepare for chemotherapy treatment with a port installation in her stomach. While most cancer patients receive chemo as a standard treatment, Kim’s case was a bit unusual. Only about 5% of those who have such an advanced stage of ovarian cancer receive this type of treatment since it is so physically grueling on the body. “My surgeon would only give this chemo to patients who she thought could withstand the medicine. I was 52, about 10 years younger than the average patient at the time, and physically fit, so they decided I was a good candidate,” Kim explains.
Kim received chemotherapy in her stomach and chest over the course of six months. “It was the hardest thing I’ve ever had to go through,” she recalls. Her treatment involved spending several days inpatient at the hospital for stomach chemotherapy, going home for a couple of days to recover, and then receiving outpatient chemotherapy treatment in her chest.
It was a demanding schedule, but Kim has an incredible circle of friends who helped her during this time. “Someone always picked me up and brought me to my appointments and sat with me. They created a schedule to make sure someone was always there with me, which I wasn’t even aware of until after,” Kim remembers.
When her treatment concluded, Kim remained cancer free for about a year before having a recurrence in 2015. She then began her second round of chemo treatment.
“With my recurrence, came ascites, which is when extra fluid builds up inside of the abdomen. Having ascites can cause a lot of additional uncomfortable symptoms like stomach pain, nausea, and bloating,” Kim explains. To treat this, Kim’s doctors had to drain the ascites fluid and eventually the chemotherapy kicked in and kept the symptoms from returning.
“Around this time, my oncologist told me that once a patient’s cancer recurs like mine had, they will continue to recur twice as fast. She told me I should start getting my affairs in order and that my life expectancy would not be long.”
Clinical Trial Opportunities
Several months after her cancer recurrence, Kim’s doctor let her know there was an opening in a clinical trial she was eligible for. Knowing nothing about clinical research, Kim decided to trust her oncologist and give it a try.
“I was nervous but also excited about joining the trial. I figured nothing could be worse than what I’d already gone through, after having major surgery and getting beat up by chemo,” Kim says. All the studies at the time indicated that the trial drug would only extend Kim’s life expectancy by 7 months.
“I joined the clinical trial in December 2015, unsure if I was actually on the trial drug or a placebo,” Kim notes. Every two weeks, Kim had lab work so her oncologists could review her cancer antigen test to gauge how she was responding to the treatment. At first, there was a worry Kim might have a recurrence with cancer for the third time. But by March, Kim’s lab results showed a drastic decrease, a sign that the medication was working to keep the cancer away. Since then, Kim has been able to live a cancer-free life.
Life After Cancer
The clinical trial Kim was a part of concluded in 2021 and the drug is now FDA approved. Kim remains on the medication, now provided by her regular pharmacy.
“For me, my cancer feels like a lifetime ago. I was so incredibly sick, to the point that my family members and I believed I would die within a year. Now I’m back to working full time and I just took out a 30-year mortgage,” she reflects.
Kim attributes beating cancer and the many new medications that exist today to clinical research. In 2013 when she was diagnosed, there were far less treatment options and the life expectancy for someone with ovarian cancer was very low. Now, there are more treatments available and women like herself can go on to live for decades after their diagnosis. One barrier to treatment that remains for ovarian cancer patients is the timeframe in which they are diagnosed. “Unfortunately, most people with ovarian cancer find out in a later stage of the disease because the symptoms they experience so similar to daily pains women have for most of their lives,” Kim says.
Advocacy Work
Once she started feeling healthier, Kim started looking for advocacy groups and community organizations online. This eventually led her to the National Ovarian Cancer Coalition (NOCC) where she has since served as a patient advocate and mentor to others with ovarian cancer.
“When I was in the hospital, I found so much information online for breast cancer, and it left me wondering, where are all the ovarian cancer advocates? I realized that this community is smaller because fewer women survive this disease. As a survivor, it’s my obligation to be vocal and spread awareness when I can,” Kim says.
Through mentor programs with the NOCC and OCRA, Kim has had the chance to connect with other ovarian cancer patients, give them encouragement, and share advice. “Most women I’ve spoken with have had to look up trials online by themselves. I can’t even imagine having that additional burden when you’re already sick and fighting for your life,” Kim says.
One of the hardest conversations Kim has had through the mentoring program was with a cancer patient living in Canada. Living 2 hours away from a hospital, she hadn’t even received a port for medicine in her chest, which is crucial for cancer patients because arm veins can’t withstand constant use. “This patient was only in her 40s and was told she would only have about 5 years by her doctor and there was nothing she could do. Unlike me, she didn’t have the option to travel or try out different hospitals because of how Canada’s healthcare system functions. She’s had to research clinical trials on her own and it breaks my heart,” Kim shares.
Advice for Others
Kim is a very vocal advocate for clinical research awareness, education, and participation. She shares that if her current medication stopped working tomorrow and a new trial was available, she would join in a heartbeat. “As someone who has been through a trial that saved my life, I remind friends and family that clinical research is a viable healthcare option they should always consider,” Kim notes.
“I think most ovarian cancer patients who say no to joining a trial are tired of spending time in the hospital and want to move on with their lives. I always say to them, ‘You’ve done the hard part already. Clinical trials are just the icing on the cake and could ensure you become or remain cancer free. Don’t quit before you finish.’”
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