Getting the word out: Hope, determination greet Ovarian Cancer Awareness month

Barring a catastrophic car crash, a Sylvania mother of three says she expects to die of ovarian cancer at some point.

In the meantime, her passion for life has not ebbed; Amy Sarantou, 52, cares for others with the same energy she has focused on her own survival, which includes a double mastectomy with reconstruction surgery, removal of her ovaries, fallopian tubes and a hysterectomy.

“I attacked it very aggressively,” Mrs. Sarantou said of chemotherapy, surgeries, and a maintenance drug she must take to suppress the cancer. “I don't sulk. I am a results-oriented person.”

Diagnosed with Stage 4 ovarian cancer in 2015, she faced survivor's guilt for many years after. The average five-year survival rate is almost 51 percent, according to the National Cancer Institute. She has far surpassed that with one recurrence involving a tumor that was removed before it attached itself to any vital organs in 2021.

“I was afraid to face anyone with ovarian cancer,” said Mrs. Sarantou, who now sits on the board of directors of the Ovarian Cancer Connection, an independent nonprofit that focuses on creating awareness around the deadly disease. She reassessed those overwhelming feelings with one thought: “What am I doing?”

IF YOU GO

Sept. 21: Ellen Jackson Ovarian Cancer Walk takes place from 8 a.m. to noon, at the Buckeye Broadband campus at 2700 Oregon Rd., in Northwood, Ohio.

Sept. 26: The Strawberry Acres Candlelight Vigil takes place from 7 to 9 p.m. at 958 S. McCord Road in Holland, Ohio.

Sept. 30: An OCC Golf Outing, costing $150 and benefiting women with ovarian cancer in northwest Ohio, takes place from 1 to 5 p.m. at Highland Meadows, 7455 Erie St., in Sylvania.

More info: Ovarianconnection.org

She answered herself by doing more.

Ovarian cancer is not running rampant throughout the United States, but about 12,000 women die from it each year. It is disheartening when the parts of women meant to facilitate life bring death, instead.

Ovarian cancer, which is the second most common gynecologic cancer in the United States, has many causes, unique presentations, and individualized treatments. It is not easy to detect – most women have entered Stage 3 or Stage 4 before a diagnosis is ever made.

Nationally, new ovarian cancer cases have been falling by about 2.7 percent each year from 2012 to 2021. Death rates have been falling on average by 2.4 percent each year from 2013 to 2022. Ohio seems to be bucking the trend: 709 cases of ovarian cancer were diagnosed in 2018, representing a 31 percent decrease from 2009. In addition, 26 percent of ovarian cancers were diagnosed at a later stage in 2018, according to the Ohio Department of Health.

“Ovarian cancer has vague symptoms, and then all of a sudden just blossoms,” said Dr. Ira Winer of Wayne State University's Karmanos Cancer Institute, which partners with and receives referrals from many northwest Ohio physicians. “It is a significant cause of mortality.”

Of the 20,000 women diagnosed with ovarian cancer each year, the average age for detection in women is 55 to 64. If there is a genetic component, it can present much earlier, according to Dr. Winer.

Mrs. Sarantou is one of those cases. With no indication that harmful changes in the BRCA1 gene were being carried through her family line, she did test positive for the genetic mutation that predisposes her to some types of cancers.

Research on detection, treatments and maintenance procedures is moving quickly, says Dr. Winer, adding that many clinical trials are available at Karmanos. That is one reason to avoid Dr. Google and seek out a gynecological oncologist, with the expertise to access the best options, he added.

Education and awareness are key, according to Gini Steinke, founder and executive director of the Ovarian Cancer Connection. The organization saw its start in 2005 after the mother of one of Ms. Steinke's friends died of the disease. Though it does not get the attention that breast cancer awareness advocates get, it has become a prolific group and has grown steadily over many years, Ms. Steinke said. Teal ribbons are its signature.

Detection

Symptoms of ovarian cancer are not very specific. They can include vaginal bleeding, pain or pressure in the pelvic area, abdominal or back pain, bloating, difficulty eating or feeling full quickly, or urinary urgency or frequency, according to the Ohio Department of Health.

“It is painless,” Mrs. Sarantou said of the silent killer's onset.

However, there is a new tool for detection being researched: a blood test.

Cancer is a disease in which some of the body's cells grow uncontrollably and spread to other parts of the body, according to the National Cancer Institute. Researchers at Johns Hopkins Kimmel Cancer Center are studying the results of a simple blood draw that can detect, with the help of machine learning, the different amounts of a repetitive DNA that are found in those with cancer versus those without.

“:Blood testing holds great promise for the earlier detection of cancers before people exhibit any symptoms,” said lead study author Dr. Christopher Douville, an assistant professor of oncology at Johns Hopkins.

“We evaluated 1,686 individuals multiple times to assess whether our machine-learning model consistently delivers the same answer,” he said. “This is crucial when screening asymptomatic patients, so people aren't told incorrectly that they have cancer.”

The research team, which published its finding Jan. 24, reached 98.9 percent specificity, which meant false-positive test results were minimal.

Common route

Epithelial cells cover the surface of the ovary, line the fallopian tubes, and form the membrane which encases organs in the abdomen and pelvis. Cancer from these cells is the most common kind of ovarian cancer, with the majority starting as lesions in the fallopian tubes.

Germ cell tumors are more rare and form in cells that form the eggs.

Surgery and chemotherapy are the most common treatments, according to Dr. Winer.

Those with advanced ovarian cancer do respond to chemotherapy at least for the short term. About 80 percent will relapse and the clinical course is marked by periods of remission and relapse until chemotherapy resistance develops, according to the Cancer Research Institute. Fifty percent will die from the disease in less than five years.

A Cleveland Clinic study reported in June is looking at a protein identified as a driver of ovarian cancer chemoresistance.

A CD55 protein found on a cell's surface seemed to be linked to a resistance to chemotherapy, leading researchers to find that, when the protein migrated to the cell nucleus, it set off a response that made the cancer more aggressive.

“Cancer cells can do unusual things -- co-opt existing pathways and create new pathways we didn't know were possible,” said Dr. Ofer Reizes, of the clinic's Lerner Research Institute. “Once we discovered this new pathway, we wanted to see if we could block CD55 from moving into the nucleus. And then, once we prevented that move from occurring, we needed to determine whether we could halt the cancer's progression.”

The study showed blocking CD55's migration from the cell surface to the nucleus disrupted cancer growth and lessened the cell's resistance to chemotherapy.

As ovarian cancer treatment often involves waiting for one treatment to fail before trying something new, the findings in the Cleveland Clinic study may help doctors and patients to decide to avoid chemotherapy if CD55 is already present in the cell nucleus.

A future vaccine?

PhotonPharma, a biotechnological company, announced in March that it had received FDA approval for a clinical trial for the treatment of Stage 3 and Stage 4 ovarian cancer using Innocell, a cell-based vaccine therapy.

The therapy uses inactive tumor cells that are designed to activate the patient's own immune system to fight the cancer.

“The FDA's clearance to proceed into our clinical study with Innocell marks a significant step in developing this new therapy,” said Ray Goodrich, CSO and co-founder of PhotonPharma.

For women who are navigating the sometimes overwhelming amount of information and costs associated with ovarian cancer, Ms. Steinke says the people who make up the Ovarian Cancer Connection are there to help.

As September is recognized as Ovarian Cancer Awareness Month, a number of events, including the 20th annual Ellen Jackson Ovarian Cancer Walk, are scheduled.

“At the end of the day, we walk away and know we have touched at least one person,” said Ms. Steinke, adding that the agency also provides some financial assistance.