Ovarian cancer survivor chooses positivity

Carol “Sully” Sullivan was on her fifth or so round of chemotherapy treatments for stage 3 ovarian cancer. All of her hair had fallen out, every last bit, so she penciled in eyebrows for a round of pickleball with her league in Hardeeville, a town not quite 25 miles from Hilton Head Island.

But it was one of those hot, sweaty South Carolina days and, without thinking, she wiped the sweat away. In between rounds, standing around with the other players and the spectators, her wife, Joan, noticed brown marks on Carol’s sleeve.

“What’s that on your sleeve?” Joan asked.

Carol’s penciled-in eyebrows were no longer on her face. Their smudged remnants were smeared across her sleeve.

“Oh my gosh – those are my eyebrows!” Carol exclaimed. The entire group seemed to hold its breath, not sure how to react.

Carol, though, laughed uproariously.

“And to think, they came out good today!” she laughed, and the group broke into laughter.

“People look for your reaction to know how to react themselves,” Carol said.

“It's looking at positivity as a mirror,” she explained. “It’s kind of how I looked at life in general before this. I've been blessed. I'm a very positive person. But I think the analogy I came up with is to be a mirror. What it does is allows you to be surrounded by people in a positive light versus a negative light.”

“People definitely look for cues from the person,” Joan added. They live in a tightknit over-55 community, Latitude Margaritaville, that rallied around them.

“When you laughed, everybody laughed. When you cried, everybody cried,” she told Carol.

In fact, when 2022 rolled over to 2023, their friends all commiserated that Carol must be so glad to put the year behind her.

“And I'm like, ‘I don't want to forget that year,’” Carol said. “It was an amazing experience overall. It has made me who I am today. I met some amazing people. The nursing staff on 7West – they are family. They will always be my family. All the folks that are on Dr. Orr’s team – I wouldn't have met them otherwise.”

It wasn’t the biscotti

Carol’s cancer story started with a blood clot in her leg, known as a deep vein thrombosis, or DVT. It’s a serious condition because these clots can travel into the lungs. She had complained to her doctor of a pain in her leg, and an ultrasound uncovered the DVT – which explained the pain but didn’t really explain why she would have this type of blood clot that is most often seen among people who are, for example, immobile, overweight or pregnant or have autoimmune diseases or have been still for extended periods of time, like during long airplane trips.

“They said, ‘You have zero percent chance to get a DVT based on your lifestyle.' I'm active. I'm healthy, in shape,” she said.

In the meantime, she noticed that she seemed to be gaining weight around the midsection. That’s not uncommon for many women, but it was unusual for Carol.

“I thought it was this biscotti I was making at the time,” she said.

Then, a few weeks later, she had returned to running her regular exercise class and was doing a hand-release pushup when she felt something that wasn’t quite right. It wasn’t pain so much as a sensation that shouldn’t have been there. She figured it was probably a hernia and decided to go to her gynecologist to get it checked out.

“My doctor did a quick internal exam, which didn't take but a couple of seconds,” Carol said. “Her eyes got really big, and she said, ‘It's not a hernia.’ And she immediately said to me that she thought it was ovarian cancer.”

Ovarian cancer was not what Carol had expected when she woke up that morning.

“I didn’t know how to react,” she recalled. Right away, her doctor did a blood test and an ultrasound.

“They did the ultrasound, and it showed a humongous tumor,” Carol said. In fact, there were two tumors. Carol’s levels of a cancer antigen called CA-125 were at 3,300 units/milliliter, while the normal range is considered 0-35 units/milliliter.

Ovarian cancer’s silent symptoms

Ovarian cancer is notoriously difficult to catch early, and most women aren’t diagnosed until the cancer has already metastasized, or spread.

Most of the symptoms of ovarian cancer can also be caused by other, more common, conditions. The difference is that, with ovarian cancer, the symptoms persist and are a change from what’s typical for that individual. Symptoms can include:

• Bloating.
• Pelvic, back or belly pain.
• A change in bladder habits.
• Vaginal bleeding if past menopause or unusual discharge.
• Feeling full quickly or having trouble eating.

In addition, women with ovarian cancer are at high risk of venous thromboembolism, a term for blood clots in the veins that include DVT, which Carol had, and pulmonary embolism, which is when the blood clot has traveled to the lungs.

Because ovarian cancer is the fifth most common cause of cancer death for women, and because there is no screening test to catch it early, groups like the Ovarian Cancer Research Alliance and the Society of Gynecologic Oncology recommend that women and their doctors discuss the option to remove a woman’s fallopian tubes if she is already scheduled for a pelvic-area surgery and does not plan to get pregnant. Most ovarian cancers are believed to start in the fallopian tubes, and therefore removing the fallopian tubes should prevent those cancers from forming.

The Ovarian Cancer Research Alliance also recommends that women understand their genetic risk for ovarian cancer. Someone with a family history of the disease may need more extensive preventive action. Uncovering genetic risk can be done through genetic testing with the Hollings Hereditary Cancer Clinic or by participating in the In Our DNA SC community research study.

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Researching treatment options

Carol’s doctor initially referred her to an oncologist in Georgia. However, her health insurance was restricted to South Carolina, which, she said, turned out to be a blessing in disguise.

Still, she decided to seek an initial consult with the Georgia doctor while her best friend, Sheila Beard, an executive coach, reached out through her network to get recommendations for South Carolina doctors. Beard came back with two names at MUSC Hollings Cancer Center, one of which was Brian Orr, M.D., a board-certified gynecologic oncologist.

“I read both bios. Both were exceptional, but Dr. Orr somehow just stood out to me,” Carol said. At her consult with the Georgia doctor, she posed a question. “I asked, ‘If you were a patient that had to seek care in South Carolina, who would you go to?’ And she said, ‘Dr. Orr.’”

When Carol met Orr, she knew she had made the right choice.

“He was great,” she said. “He didn't sugarcoat things, which initially scared the living daylights out of me.”

Orr outlined all the possible scenarios. But most importantly for Carol, he offered hope.

"The one thing that he said that stuck out to me the most – and I've held onto it to this day – was he wanted to keep me on a curative path. It was the best thing he could have said to me because it gave me that hope right off the bat that he's got me."

Carol Sullivan

“The one thing that he said that stuck out to me the most – and I've held onto it to this day – was he wanted to keep me on a curative path,” she said. “It was the best thing he could have said to me because it gave me that hope right off the bat that he's got me."

Carol’s appointment with her gynecologist had been in April. She was scheduled for surgery at the end of May. In that short time, the tumor grew rapidly, swelling her belly as though she were pregnant.

“It was amazing how quickly it grew,” Joan said. “Just amazing. There was no doubt that there was something in there.

“That’s not biscotti,” she added, looking at a photo of Carol from just before the surgery.

Intraperitoneal chemotherapy

Carol’s surgery went well, but surgery is only the beginning of treatment for people with stage 3 ovarian cancer. Next up was chemotherapy.

Carol was interested in a less-used option called intraperitoneal chemotherapy, or IP chemotherapy. In IP chemotherapy, the abdominal cavity is flooded with the chemotherapy drug so that it coats the surfaces of all organs.

Orr explained that ovarian cancer is a surface cancer that “exfoliates.” Tiny slivers of the cancer can spread about the abdominal cavity like snowflakes in a snow globe.

“We're not dealing with some sort of nuisance. We're dealing with life-threatening diagnoses. So yes, we all welcome second opinions."

Brian Orr, M.D.

Chemotherapy that is given intravenously goes into the bloodstream to reach tumors through their blood supply – but those little bits of exfoliated ovarian cancer aren’t well connected to the blood supply.

“Some of these little tumors in the abdomen – they're just sort of sitting there. You could flick them off. So how is the IV chemo going to actually access some of those tumors or the microscopic cells in the abdomen we can’t see?” Orr said.

Studies have shown that IP chemotherapy can improve survival for women with ovarian cancer. The downside? It’s extremely toxic. So much so that each round of infusions requires an in-patient stay in the hospital.

Carol weighed her options carefully, even going so far as to travel to the Sidney Kimmel Comprehensive Cancer Center in Baltimore to talk to a leading expert on IP chemotherapy for ovarian cancer.

Orr supported her explorations – indeed, he supports any of his patients seeking out second opinions.

“We're not dealing with some sort of nuisance. We're dealing with life-threatening diagnoses. So yes, we all welcome second opinions,” he said.

“Patients sometimes feel embarrassed to say, ‘I'm getting a second opinion,’” he continued. But oncologists are generally collegial and happy to consult each other. In Carol’s case, Orr spoke with the doctor in Baltimore about her care and the potential for IP chemotherapy.

Although the treatment isn’t commonly offered at Hollings, Orr has experience with it and is happy to offer it to patients who fit the profile that’s most likely to benefit. In Carol’s case, a mutation in her cancer’s DNA indicated that she could be one of those people who would benefit; Orr said he was ready to proceed if Carol wanted to, and she decided to go for it.

“One of the scary things was that half the people that start IP chemotherapy don't normally finish because it's too difficult,” she said. “But I'm like, ‘I just have to try it to give myself the best chance I can.’”

For six rounds, she had three-day hospital stays followed by outpatient chemotherapy the next week.

“It wasn't a cakewalk,” she said. "But I actually was able to get through it without major adverse side effects, and that I attribute a lot to the care that I had. The support system is so important, not only from the nurses here but Joan was there by my side, and my community was amazing.”

Sully’s Village

Everyone feels differently about disclosing a cancer diagnosis. It can be a difficult conversation, especially if the patient has to keep retelling the story and answering the same questions.

But Carol found strength in the retelling.

“It was important to me that I told each and every close friend individually,” she said. “For my friends in our community, I met with each of them in person. It made it more personal and real. Each time of explaining what was happening and what my plan was to deal with, it helped me with acceptance and gave me strength to fight with all my might.”

And her community rallied to her side.

Her pickleball team surprised her right before surgery with team bracelets that said “Sully’s Village.” The bracelets spread quickly, first to spouses, then to friends and other pickleball teams. Carol even brought some to the hospital to give to nurses.

The bracelets were just one tangible reminder of how many people were in her corner. Joan also felt that love and support as word spread.

“People would come up to me and say, ‘I don't want to bother you. How's Carol? Do you need anything?’” Joan said. “And I feel like, ‘Not a bother. Even just that – you don't have to do anything but just the fact that you asked. Wow.’ There's so many people out there going, ‘You OK?’ It was pretty cool.”

And Sully’s Village ended up encompassing more than the neighborhood community. Many staff members at MUSC, but especially the nurses on 7West, the inpatient gynecologic oncology floor of University Hospital, became friends.

They were, Carol said, “true mirrors of the positivity” that she brought to each treatment. Their laughter rang out from Carol’s room – a welcome sound of hope and life to the doctors on the floor. Even months after finishing chemotherapy, Carol still brings a bottle of Mountain Dew to Orr during her follow-up appointments and stops by 7West to visit the staff.

As much as that sense of community helped Carol and Joan to get through the past year, so, too, did faith.

“For me, a lot of it's faith,” Joan said. “I had one really bad day. And then from then on, it was just like, ‘Tell me when to worry.’ Because I couldn't handle it otherwise. And I just followed her lead. Where she seemed to falter, I pushed, and where she was going strong, I was right beside her.”

Anticipating that Carol would be too weak to be out and about during chemotherapy, a close friend made “Flat Sully” – a life-size cardboard cutout of Carol that made appearances at the dentist, on pickleball courts and at parties – even though Carol ended up being able to get around more than anyone expected. In fact, “Flat Sully” and “real Sully” crossed paths more than once.

As Carol finished chemotherapy and slowly grew stronger, she resumed more of her activities, and Flat Sully took a backseat. Back on the pickleball court, Carol joked that her game would come back when her hair did – and, so far, that seems to be true.

Now, a year after diagnosis, she’s done with IP chemotherapy and is on a targeted therapy called a PARP inhibitor. The drug blocks an enzyme that might help cancer cells to repair damage to their DNA, hopefully preventing the ovarian cancer from recurring.

Words of experience

An ovarian cancer diagnosis comes as a shock. Fewer than 20,000 women are expected to be diagnosed with ovarian cancer in the U.S. this year, so it’s a cancer that most people are unfamiliar with.

Carol tells other women to pay attention to their bodies – even to the vague, seemingly unrelated symptoms that can signal ovarian cancer. For her, she just felt that something was off, and she’s glad that she pursued that feeling.

Joan advises taking a partnership approach with the medical team.

“Participate,” she said. “Be a part of the team. I mean, Dr. Orr’s a doctor, but Carol was just as important because he needed her input. She needed his input. So they worked together.”

And don’t be afraid to call, she added.

“Waiting was the hardest thing. We hated waiting. So we would give it a little time, but eventually Carol would call,” she said. “Know that you’ve got to wait, but don’t be afraid to call and step up and say, ‘Hey, I need some information.’ And participate. Know that you’re part of that team.” Carol is a naturally positive person, but it’s a trait that she’s nurtured as well.

“You wake up every day, and you have a choice to decide what today's going to be like. And I always try to find the ways to make that day a good day.”

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