Finding Hope, Resources, and Community: A Conversation with Shelley Laurell of the Mucinous Ovarian Cancer Coalition

When you're diagnosed with a rare cancer, one of the hardest parts isn't just the diagnosis itself—it's finding reliable information, experienced specialists, and people who truly understand what you're going through.

For women diagnosed with mucinous ovarian cancer, that challenge can feel especially overwhelming. Mucinous ovarian cancer is a rare subtype that behaves differently from other forms of ovarian cancer, making specialized knowledge and expert care incredibly important.

We recently spoke with Shelley Laurell, co-founder of the Mucinous Ovarian Cancer Coalition (MOCC), about the organization's beginnings, the resources they've built for patients and families, and the work they're doing to advance research around the world. Shelley and her late sister, Rhonda, created MOCC after experiencing firsthand how difficult it was to navigate a rare diagnosis.

Below, Shelley shares her story and advice in her own words.

Can you tell us about your connection to Mucinous ovarian cancer and what inspired you to start the Mucinous Ovarian Cancer Coalition/MOCC?

My late sister, Rhonda, and I started kicking around the idea for MOCC about six months after her diagnosis with this disease. We started getting more serious about planning in early 2020, and launched on her birthday, September 17th.

What motivated us to do this is how very difficult it was to find information. Rhonda’s disease was initially missed. Then when she had her surgery, missteps occurred. We wanted desperately to find a second opinion and explore the possibility of other treatment options, but had no idea where to begin.

We spent hours online going from one site to another. We knew there must be a better way. After we felt like we had a baseline of knowledge, we thought that we could help save other women and families time if we somehow shared what we had discovered.

Was there a specific moment when you realized there was a need for an organization dedicated solely to mucinous ovarian cancer?

I’m not sure there was any one specific moment, but rather an accumulation of struggles and setbacks. The more we learned about mucinous, the more we realized how desperate my sister’s situation really was. Her disease was very advanced, and she had many setbacks and complications at every turn.

As a family, we wanted to connect with researchers who had experience with this disease and then help fund their work. We naively believed that by getting more money into their hands quickly, it might make a difference for Rhonda. We had Zoom calls with researchers from New Zealand and Australia to Saudi Arabia and the UK. It was only then that we realized how very little money was going toward this disease.

What were the biggest challenges you faced in the early days of launching MOCC?

I would probably say it was time was our greatest challenge. MOCC is 100% volunteer driven. We all have jobs, families, and busy lives. And we were all in on providing Rhonda with the best possible care and the most joyful days we possibly could. So, the days were incredibly busy already.

Rhonda and I would talk through ideas in the evenings, and then I would get a very early start on logistics every morning before my real job. I’m a small business owner, so my work day hours had some flexibility. I would use those early morning hours to everything from writing the copy for the website to filing the paperwork for nonprofit status. Organizing all of the research to include in the online library was also an enormous undertaking.

Looking back, what are you most proud of accomplishing since the organization began?

While we are immensely proud of being able to increase Rhonda’s Award to $100,000 a year for at least the next three funding cycles, what we’re also pleased about is that we have built such a resource-driven website. We’ve been able to connect with gynecologic oncologists who offer second opinions, including some who do so remotely, and create a contact list we update frequently. It’s the most visited page on our website.

The resource library is another accomplishment we’re happy with. It’s continuously updated whenever we find new articles or podcasts. We also created several proprietary guides that we often hear are very helpful tools. One is advice from our late Physician Advisory Committee Chair, Dr. Michael Frumovitz, on what to do next after a diagnosis. The other is written by Dr. Kylie Gorringe, the very first Rhonda’s Award winner, with information on how different mucinous is from other types of the disease.

What advice would you give someone who has just heard the words, "You have mucinous ovarian cancer"?

I would say to learn as much as you can about the disease and your own pathology. This is a very complex and rare cancer so education is important. Download and review the guide that I just mentioned by Dr. Frumovitz. You can find it on our Home page and in our resource library.

There is also a private Facebook support group (Mucinous Ovarian Cancer Support Group) that is made up of women with this disease. They are a tremendous source of information and strength to one another.

How important is seeking a second opinion from a specialist familiar with mucinous ovarian cancer?

It’s usually pretty important, but there is a caveat. Some institutions and gynecologic oncologists are experts at this disease. If you are fortunate enough to live near one of them, such as those on our Second Opinions page, you might not need a second opinion.

But for those women in rural communities or whose treating physician doesn’t have experience with mucinous, I would say it’s a necessity. Mucinous ovarian cancer behaves very differently than other forms of the disease. Having input from a physician with experience can make a big difference in the course of treatment.

How can patients, survivors, and caregivers get involved with MOCC?

There are a few ways people can get involved with our all-volunteer organization. The first is by helping raise awareness. This disease typically occurs in younger women. That presents a challenge because the medical community doesn’t always think of ovarian cancer when a young woman presents at a doctor’s appointment or emergency room with vague symptoms. We have some social media tools on our website and a video that you can share to help spread the word.

The other way to help is by raising money for research. You can host an event and donate the proceeds by check or through our online donation platform. Small fundraisers can add up to make a big difference. It’s important to know that research funding has experienced some major setbacks at the national level in recent years, so it’s up to us to help bridge the gap.

Many Portt readers are women navigating cancer while raising children, building careers, or caring for others. What message would you like to share with women who are facing a mucinous ovarian cancer diagnosis while trying to continue living their everyday lives?

It is definitely a difficult juggling act for women we work with. Many are young moms trying to navigate a really tough situation. I would say give yourself permission to ask for and accept help. Family and friends probably feel helpless and want to support you in this journey. Let them.

And if you don’t have anyone who can provide assistance, talk with the care navigator or social worker at your treating institution. There are likely options available from community groups nearby.

What are your biggest goals for MOCC over the next few years?

We hope to continue outreach to women with this disease and find ways to make this journey easier to navigate. We’re getting more creative in how we do that, as you’ll see over the next year.

Another area we are excited about is helping fund a collaborative group of researchers who are dedicated to researching this disease. The group is in the infancy stages, but the goal is for these teams from around the world to share what they’ve learned about Mucinous ovarian cancer. And to then identify areas of opportunity for new research or expanded research in areas that hold promise. Stay tuned to our social media to learn more about that. And if you don’t already do so, subscribe to our email newsletter for updates.

Learn More About MOCC

The work of the Mucinous Ovarian Cancer Coalition is helping ensure that women diagnosed with this rare disease don't have to navigate it alone. Through education, research funding, specialist resources, and a growing global community, MOCC is creating hope for patients and families around the world.

To learn more about the organization, access its educational resources, or support its mission, visit the Mucinous Ovarian Cancer Coalition website.