Low-grade serous ovarian cancer survivor establishes research nonprofit

Jane Ludemann is an optometrist by profession and founder of Cure Our Ovarian Cancer, a registered research nonprofit based in New Zealand that supports low-grade serous carcinoma research through organizations in New Zealand, the United States, Canada, Australia and the United Kingdom. In 2017, at age 32, Ludemann was diagnosed with stage II low-grade serous ovarian cancer. Through Cure Our Ovarian Cancer, she helps women find better treatments so they can survive — and be informed and supported so they can thrive.

I’d spent my 20s traveling, gaining experience in private practices and hospitals and moving every year or two. I was looking forward to settling down with my now husband, having a family, buying into a practice, developing long-lasting relationships with my patients and contributing to my local community.

I had been having these vague nonspecific symptoms for at least two years and had been seeing my family doctor regularly, in addition to several specialists. Unfortunately, no one connected the dots and offered the appropriate tests for ovarian cancer that could have led to earlier detection. My life turned upside down when I was admitted for emergency surgery when the tumor caused my ovary to twist.

When I received my diagnosis about a month later, I went on Google, read all the academic papers I could find and spoke to friends, family and family of friends who were doctors trying to get my head around my diagnosis. It became clear that Dr. David Gershenson at MD Anderson was a leading expert, in addition to being one of the most experienced clinicians in the world for treating low-grade serous carcinoma. I gathered my medical notes, corresponded with MD Anderson’s excellent international office and hopped on a plane to Texas. It was both reassuring and devastating to find out that the best treatment options for my cancer were available in New Zealand and that they were not particularly effective long-term.

It was such a scary time for us, but Dr. Gershenson was calm and capable. He spoke with great care and consideration. We were impressed with how he took his time answering our long list of questions.

It was hard to believe just how little research was happening anywhere in the world for my frequently incurable cancer, with fewer papers published per year than on breast cancer per day.

At least 85% of women with this cancer experience recurrence, and most will ultimately die of the disease. These are overwhelming odds. The reality is, the only way survival rates will improve is through research.

When I realized the scope of the problem, we decided to do what we could as a family to make a difference. We donated $1 million to MD Anderson’s low-grade serous ovarian cancer research.

Through our initial donation, our family has seen the impact individuals can make. MD Anderson added low-grade serous carcinoma to its Moon Shots Program®, making it a priority to find better answers for women with this cancer. Dr. Gershenson and Dr. KK Wong identified a mechanism that contributes to resistance to inhibitors of mitogen-activated protein kinase kinases MEK1 and MEK2, identifying a potential treatment. Building on that research, they received a U.S. Department of Defense research grant of $720,000 to further their investigations. It was our donation that helped make that happen.

But on its own it wasn’t enough. I wanted to ask my family and friends to donate, but I didn’t know where to direct them. There are so many wonderful ovarian cancer charities around the world doing good things, but unfortunately low-grade serous carcinoma was being largely overlooked. I wasn’t willing to wait at the back of the queue. Things need to change, and quickly.

I founded Cure Our Ovarian Cancer in June 2018. MD Anderson was one of the first organizations to create a donation pathway specifically for low-grade serous ovarian cancer research. For that, we’re very grateful.

In addition to funding research, Cure Our Ovarian Cancer recognizes there is a lack of good information targeted at women with this cancer. Our website, cureourovariancancer.org, features discussions on treatment, including an interview with Dr. Gershenson, information on support groups and personal stories.

As founder of Cure Our Ovarian Cancer, I want women to know that their voice is powerful. Their lives are important. Together we can unite and create change. We want to see a world where the survival rates of low-grade serous carcinoma reach those of breast cancer with effective early-detection methods and more treatment options. I’m thankful that this is a goal MD Anderson shares.

Promise invites cancer survivors to share their reflections. Email promise@mdanderson.org.