A rare but deadly disease

Ovarian cancer survivors talk the importance of awareness

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Ovarian cancer survivors urge any woman who feels that something is not quite right to “pursue, pursue, pursue” and request that the doctor does enough tests to rule out the possibility of ovarian cancer.

“Ovarian cancer is rare, but deadly,” said Sue Hester, an ovarian cancer survivor and president of the Colorado Ovarian Cancer Alliance (COCA) board. “It is so scary to be diagnosed with this.”

Hester, a resident of Denver's Congress Park neighborhood, was diagnosed in January 2010 with stage 3c ovarian cancer. She was 62 — the average age of diagnosis, though it also known that any woman of any age can get ovarian cancer, states COCA's website.

At the time of her diagnosis, Hester had a 40% survival rate. Since then, she has undergone surgeries and 18 rounds of chemo, and has survived a couple of recurrences.

Hester is now cancer-free, she said, but still gets monitored every three months.

“I don't think I'll ever feel completely cured of it,” Hester said.

As its name indicates, ovarian cancer is a growth of abnormal malignant cells that begins in the ovaries.

A woman's annual gynecological exam does not check for ovarian cancer, the COCA website states. Though there is no diagnostic tool, in 2007, the Ovarian Cancer Research Fund Alliance “endorsed a consensus statement on ovarian cancer symptoms” and 95% of women diagnosed with ovarian cancer reported having had one or more of the most common four. They are bloating, pelvic or abdominal pain, urinary urgency or frequency and difficulty eating or feeling full quickly.

Still, these symptoms are also associated with nonlethal conditions, states COCA, such as irritable bowel syndrome, a common disorder that affects the large intestine.

The way ovarian cancer is ruled out — or definitively diagnosed — is through a trans-vaginal ultrasound, pelvic/rectal exam and CA125 blood test, COCA states.

“When you're diagnosed with cancer, you can feel isolated and frightened,” said Jeanene Smith, 63, of Denver's Wellshire neighborhood. “This carries through to caregivers and loved ones — there is no instruction manual. But meeting others helps you realize you're not alone.”

Smith is a 21-year ovarian cancer survivor and has served as the race director for COCA's annual Jodi's Race for Awareness for the past four years.

As the largest fundraiser for COCA, a nonprofit, a typical Jodi's Race at Denver's City Park will have a turnout of at least 3,000 people, Smith said. It includes a variety of activities such as a breakfast, music, a family fun zone, an expo and, of course, the race which is offered as a 5K or one-mile loop around the park's lake.

This year, it took place virtually on June 13. Cancer survivors are at high risk for COVID-19.

By June 10, more than 1,100 people had registered for the virtual event. Participants received a Virtual Dash package — along with many other goodies, everyone got a branded Jodi's Race T-shirt, remembrance participants got forget-me-not seeds to plant to memorialize a loved one lost to ovarian cancer, and survivors got a strand of teal beads for every year since their diagnosis.

Jodi's Race got its start in June 2010, and since, has become a time to bring awareness to ovarian cancer, raise funds for COCA's various programs and for both memorializing loved ones and celebrating survivors, Smith said.

“We wanted to provide that Jodi's Race experience at home, with love, since we can't all be together,” Smith said.

A live-stream watch party took place in the morning, and some participants, such as Karen Carter of Denver's Cheesman Park neighborhood, did their own form of a race in replace of the in-person gathering.

Carter, 64, has always been a runner and started participating in triathlons in 1999. She was diagnosed with stage 2c ovarian cancer in 2009 and has run in every Jodi's Race.

Carter is also involved with COCA's Carol's Wish Financial Navigation Program.

There are women diagnosed with ovarian cancer who face financial difficulties for treatment in part because of being under-insured or not insured at all, Carter said.

“Our goal is that nobody foregoes treatment because of financial reasons,” she added.

Not to be confused with the COCA Cares program — which provides a grant to women diagnosed with ovarian cancer who are living at the poverty level to help with living expenses — Carol's Wish is a program for which women diagnosed with ovarian cancer meet with advocates to review “current medical coverage and clinical treatment plan and, if needed, work together to create a new, personalized strategy to minimize your financial burden going forward,” states the Carol's Wish website.

“This is probably the most meaningful work I've ever done,” Carter said. “Truly, my big reward is helping these ladies through the journey that I faced 11 years ago.”

It is life-saving work, Carter added.

“I don't know of anything more rewarding than that.”

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