Nearly two decades ago, oncology nurse Robin Cohen was frustrated that there were so few resources for her patients with ovarian cancer.
Today, the outlook for her patients has changed. That is due, at least in part, to the nonprofit she helped found and now leads as CEO.
The Sandy Rollman Ovarian Cancer Foundation Inc., based in Wynnewood and named for a former patient, funds research and has support programs for patients and their caregivers. Its goal is as simple as it is challenging: a world without ovarian cancer.
In September, look for many of Philadelphia’s tall buildings to be lit in teal, the color marking ovarian cancer awareness. To learn about events the organization is planning, visit www.sandyovarian.org
Tell us about starting the foundation.
I was Sandy Rollman’s oncology nurse. She was diagnosed with ovarian cancer when she was 32. She lived six months. I was with her every step of the way. I felt if ovarian cancer could happen to her, it could happen to anyone.
After she passed away, in May 2000, I realized what few resources were available for women with ovarian cancer. I was very young, and I had a lot of self-doubt. But I remember going into another patient’s room at the time. She was dying of ovarian cancer. I told her what I was thinking. It took all her strength, but she raised up off the bed and took my arm and shook me. She said, “You go out and fight for us.” That was a defining moment for me. She not only wanted me to go out and fight, but she needed me to go out and fight. It gave me the push that I needed. I’ve lived those words every day. That’s what I do. I go out and fight for these women.
I started the organization with Sandy’s sister, Adriana Way. We first came together to fight for Sandy. Then we came together to fight for others. We started humbly, sitting on a living room floor. We were two people with one idea. We knew nothing about running a nonprofit. But we were filled with a lot of emotion at the time. A lot of pain. But also a lot of love. We felt that if we helped just one person, it would be worth it. We never imagined where we would be today. We thought we might last a year. It’s been 18 years.
After we started the organization, I realized that ovarian cancer needed much more than an organization. It needed a powerful movement. We needed to bring the community together to heighten awareness about the disease. Awareness drives research. If no one is talking about ovarian cancer, no one is funding it. It was a challenge to get people to listen. We built the organization in a grassroots way, by people working together. We felt it was important to build something that would live on forever.
Now, we have funded more than $4.3 million in ovarian cancer research. We work hard to fund the most promising, innovative research, with the greatest likelihood of making an impact. And we offer support and programs for women and their families touched by ovarian cancer.
It just shows that everyday people can change everything.
What do most people not know about ovarian cancer that you think they should?
There’s no screening test. A lot of people think that when they go for their annual exam, they’re getting tested, but they’re not. I also say to listen to your body. If something isn’t quite right and you experience some symptoms, listen to your gut and be your own best advocate.
There are some symptoms. But they’re nonspecific, and a lot of us experience them monthly. They include abdominal bloating, feeling full quickly when eating, a change of bowel or bladder habits, and pain or discomfort in the pelvic area. If they occur every day for several weeks and they’re unusual for you, you should be evaluated. Chances are it is not ovarian cancer, but you should have it ruled out.
I would also say, don’t wait until this disease touches your life to do something about it. We need more people involved supporting patients and families and researchers. One in 78 women is diagnosed with ovarian cancer, so it’s not an uncommon disease. We all know 78 women. Chances are one will be diagnosed with ovarian cancer, and chances are she’ll be diagnosed at a late stage.
What do you see as some of the most exciting or promising recent developments?
For a long time, there was little progress. I’m a firm believer in this: You watch, you wait, you work. And you don’t give up. There were not a lot of breakthroughs for many years. A few years ago, that changed. There are actually several new treatments. Women are living longer. It’s an exciting time in cancer research.
Because the disease is so difficult to diagnose, and because there is no screening test, most of the time, when women are diagnosed, they are at stage 3 or 4. They have a high risk of recurrence. But there are new drugs that can delay that. They offer patients time to reach milestones with their families. Personalized treatments are what the focus is on right now.
There is one class of drugs — called PARP inhibitors — that block the protein PARP, which is needed to help repair damaged DNA in cells. What that means is that the inhibitors can prevent cancer from repairing its own damaged DNA. It leads to cancer cells’ destruction. A lot of research is building around these drugs. Researchers are looking at combining them with other treatments.
To be a candidate for these drugs, you have to have a genetic mutation (BRCA1 or BRCA2) or a genetic mutation in the tumor itself. Roughly 25% to 35% of women with ovarian cancer have an underlying mutation in their cancer or in their blood. All women diagnosed with ovarian cancer should have genetic testing. This is vital. It gives the best chance of developing a personalized treatment plan, should the cancer return. Also, it informs family members of their risk of developing other genetically linked diseases.
Tell us about your survivor programs.
I feel like there’s no reason any woman should feel alone in her disease. Our programs focus on finding strength, unity, and support in one another. Our Survive and Thrive program brings together ovarian cancer survivors so we can improve their overall wellness and quality of life. We teach them skills they can utilize during their treatment and beyond.
We also have a peer-to-peer mentoring program, With a Little Help From Her Friends, that connects a newly diagnosed patient with a survivor who was diagnosed at roughly the same age and stage, someone who has made it to the other side of things. Hearing another woman’s voice in that same situation is very comforting and encouraging.
What is the most important thing you’d like to say to women diagnosed with ovarian cancer and their caregivers? What advice — and hope — can you give them?
Ovarian cancer is a very overwhelming diagnosis. There are a lot of decisions to make and a lot of information to absorb. No one knows what tomorrow is going to bring. So you make the best decisions that you can with the information that you have available to you today. Support and resources are available. That makes it more manageable.
Also, to family members and patients: Be your own best advocate. Sometimes that role changes. Sometimes the caregiver is the advocate, sometimes the patient is the advocate, and often times it changes along the way.
The hope is that this is the most exciting time in ovarian cancer research. We have more drugs available today than we have ever had. There is a lot of momentum. There’s a lot of hope. The word hope to me is an action. Because there’s still a lot of work to be done.