From Diagnosis to Mission: Emily Campbell's Journey With Ovarian Cancer

At 33, Emily Campbell was living a healthy, active life. She ate well and exercised regularly with running, weightlifting, and yoga. She didn’t smoke and wasn’t a heavy drinker. Nothing about her lifestyle suggested she’d soon be facing a health crisis that would not only transform her life but also inspire a movement to change ovarian cancer research forever.

Emily was recently featured in The Expanders Podcast (presented by The Skinny Platform), sharing her powerful story with host Catherine Jelinek. Her journey illustrates the harrowing reality many women face when navigating an ovarian cancer diagnosis: the diagnostic delays, the confusion between cancer subtypes, and the critical gaps in research for less common forms of the disease.

The First Signs: “I Felt Sickly Full”

Emily’s journey began with symptoms that could have been attributed to countless other conditions. About six weeks before her diagnosis in January 2023, she started experiencing bloating and constipation, common issues many women dismiss. But one symptom particularly stood out.

“I would eat two or three bites of a meal, and I would feel sickly full afterward,” Emily recalls. Initially, she connected this to her constipation, thinking, “I’m not regular right now.”

But the bloating worsened. Unlike typical bloating that subsides after a few days, Emily’s continued to intensify until she “started to actually look physically pregnant.” The discomfort became impossible to ignore.

“I got big enough where I was waddling,” she explains. “I couldn’t sleep well because I couldn’t turn in the bed because I had a belly.”

The Dismissal Cycle: “I Was Told It Could Just Be Stress”

Like many women with early ovarian cancer symptoms, Emily encountered multiple physicians who failed to recognize the gravity of her condition. During those six weeks of worsening symptoms, she visited several doctors, including an urgent care clinic.

The diagnoses she received demonstrate the dangerous pattern of dismissal many women experience:

• “Maybe allergic to gluten” – sent home
• “Just constipation” – prescribed laxatives and sent home
• “It could just be stress” – sent home

The Breaking Point: “I Cannot Let You Go Home”

It wasn’t until Emily visited yet another doctor in January 2023 that someone finally recognized the urgency of her situation. After an ultrasound, this doctor delivered the first indication that something was seriously wrong.

“There’s so much fluid in your abdomen right now,” the doctor told her. “That’s what’s causing the bloating. There’s fluid all around your organs, around your bladder, around your uterus, around your liver, and that’s not normal.”

The doctor’s next words would mark a turning point: “I cannot let you go home in good conscience.”

Emily was instructed to go directly to the emergency room. Despite her reluctance, she followed the advice, driving herself to the highest-rated emergency room she could find in Miami.

The Diagnosis Journey: “This Is Ovarian Cancer”

What followed was a whirlwind of tests, procedures, and mounting evidence that Emily was facing something serious. The ER was crowded, with beds lining the halls. Despite the chaos, medical staff quickly began an extensive workup.

What followed was a whirlwind of tests and procedures. Emily was admitted to the hospital for multiple rounds of testing, which found something much more sinister.

By Friday, after her Wednesday admission, doctors had formed a preliminary diagnosis. “This is ovarian cancer,” they told her. “You have two masses, one in each ovary. You had this fluid. The masses look cancerous because of the way that they look on the MRI.”

The Surgery: “Did They Take Everything?”

Emily’s surgery was scheduled for the next Tuesday, less than a week after her emergency room admission. Before the procedure, she met with a gynecologic oncologist who suggested a possibility: borderline ovarian cancer, a form that’s not as invasive or aggressive as traditional invasive cancer.

The surgery was extensive. When Emily awoke, her first question to her husband Chris was telling: “Did they take everything?”

His answer: “Yes.”

The procedure had been a complete hysterectomy with bilateral salpingo-oophorectomy: removal of the uterus, fallopian tubes, ovaries, and cervix. Surgeons had also removed her appendix and scraped deposits from her bladder, colon, and the inside of her abdomen.

Diagnosis Confusion: Borderline or Low-Grade?

The diagnostic journey didn’t end with surgery. While the immediate surgical pathology suggested borderline ovarian cancer with a promising 90% prognosis, the final comprehensive pathology report would take two weeks.

This waiting period brought family and friends to Emily’s home, a welcome distraction as she physically recovered. But the story took another turn when the final pathology report arrived.

“After the pathology report, we were told it was low-grade serious ovarian cancer, which is different than borderline,” Emily explains. This new diagnosis, an invasive cancer requiring chemotherapy for ovarian cancer, meant a fundamentally different treatment path.

For Emily and Chris, this conflicting information triggered alarm bells. They sought second opinions at two leading cancer centers: Memorial Sloan Kettering in New York and Dana-Farber in Boston.

After four stressful weeks, both second opinions reversed the diagnosis again: back to borderline ovarian cancer. This diagnostic ping-pong reveals a disturbing reality: even experts can struggle to distinguish between subtypes of ovarian cancer.

The Birth of a Mission: “No One Gives a Shit”

This confusing experience revealed to Emily and Chris a critical gap in medical research and care. The lack of definitive answers about these tumor types pointed to a larger problem: insufficient research funding for less common ovarian cancer subtypes.

Emily’s reaction was a mixture of disappointment and revelation. “It just felt like, okay, well, no one gives a shit,” she says. “This is just another woman’s problem.”

But rather than accepting this status quo, Emily and Chris saw an opportunity to drive change. Their first step was identifying a project at Dana-Farber: a study of the genomic and molecular biology of low-grade and borderline tumors that needed funding.

This initial fundraising effort became the catalyst for Not These Ovaries, their nonprofit dedicated to funding research on borderline and low-grade serous ovarian cancers. Since its founding, the Not These Ovaries team has successfully raised over $2 million to support critical research initiatives.

Today, Not These Ovaries approaches the ovarian cancer challenge from two essential angles:

• Research Funding: “We wanted 100% of our dollars to go toward research,” Emily explains.
• Patient Resources: The organization aims to be “a resource and a spot where patients can educate themselves without the medical jargon but still have all the information that they need to empower themselves.”

Not These Ovaries plans to launch a doctor directory of the best ovarian cancer doctors: a critical resource considering that only 8% of U.S. counties have a local gynecologic oncologist.

The Wisdom: “Be Persistent”

Emily’s journey from patient to advocate offers vital wisdom for all women.

“Know your body, and if something is bothering you, be persistent. It’s okay to be that girl,” she emphasizes. “If you’re not getting a direct answer, keep pushing for one.”

She acknowledges the challenge many women face in medical settings: “It’s hard for us to go to doctor’s appointments and share what we’re feeling physically or mentally without a fear of being dismissed.”

For those concerned about potential ovarian cancer symptoms, Emily highlights several red flags:

• Bloating
• Constipation
• Pelvic pain
• Frequent urination
• Feeling extremely full after eating just a bite or two

Most importantly, she advises persistence when something feels wrong: “If you’re not satisfied with the answer or if you’re not getting the answer or if the answer you’re getting is not working, keep pushing.”

Podcast Key Takeaways

If you listen to Emily’s full interview on The Expanders Podcast with Catherine Jelinek, you’ll gain even more insights into her remarkable journey. Here are some highlights:

Understanding Ovarian Cancer Types

• High-grade serous ovarian cancer accounts for about 80% of cases and is typically more aggressive.
• Low-grade serous ovarian cancer grows more slowly but responds poorly to standard chemotherapy.
• The average age of diagnosis for low-grade is about 45, compared to 65 for high-grade.
• The overall five-year survival rate for ovarian cancer is only 51%.

The Diagnosis Challenge

• There is no early ovarian cancer screening test or regular check, unlike mammograms for breast cancer.
• Symptoms often mimic common conditions, making early detection difficult.
• Ovarian cancer is usually diagnosed at advanced stages (stage 3 or 4).
• Surgical biopsy is typically required for definitive diagnosis since the ovaries are difficult to access.

The Treatment Journey

• Surgery is often the primary treatment, but the extent varies by case.
• Emily’s robotic surgery with five small incisions enabled a faster recovery than traditional open surgery.
• Recovery includes significant physical limitations, including the inability to lift objects heavier than a water bottle.
• The emotional and physical vulnerability during recovery creates profound personal growth.

Not These Ovaries’ Mission

• 100% of donations go directly to research, with operations funded separately.
• The organization is developing a directory of the best ovarian cancer doctors to help women find gynecologic oncologists.
• Research specifically targets understudied forms of ovarian cancer that affect younger women.
• Emily and Chris raised $1.8 million in just three months to fund their first research project.