For Nneka and Mary “Dicey” Scroggins, advocacy is a family affair. The mother-daughter duo from Washington, D.C., have turned Dicey Scroggins’ personal ovarian cancer journey into a global crusade of awareness about women’s cancer detection in underserved communities around the world.
For two years in the mid-’90s, Dicey Scroggins, now 63, experienced unusual abdominal bloating, weight gain, frequent urination and heavy menstrual bleeding. “I traveled a lot for work at the time, and the disturbing thing was that I had to plan travel around my [menstrual] cycle,” she says.
Doctors hypothesized that her symptoms were a case of perimenopause; Dicey Scroggins sensed that something more serious was afoot. “I didn’t get any satisfaction [from that explanation],” she says. “I knew something else was wrong.”
A sonogram detected growing fibroid tumors and a cyst, and Dicey Scroggins was scheduled to undergo surgery to remove them just as she and her husband, Ed, had planned to embark on a dream vacation to Kenya and Tanzania. Dicey Scroggins shared her health news with Nneka Scroggins, the eldest of her and her husband’s three daughters.
“I told her to have the surgery first,” says Nneka Scroggins. “I hated to see them put their dream [vacation] off, but I’m glad she discussed it with me; the outcome could have been different.”
What began as a routine fibroid-removal procedure became a cancer cure. During the September 1996 surgery, Dicey Scroggins’ gynecologist saw abnormalities in the cyst, originally thought to have been benign. After a gynecologic oncologist completed the procedure, Dicey Scroggins was found to have stage 1A clear-cell ovarian cancer. The bad news was that clear-cell cancer is an aggressive widely misunderstood form of ovarian cancer; the good news was that the cancer had been detected early and removed.
For a disease regarded by many as a silent killer, women in other parts of the world may not have been as lucky as to have gynecologic cancer (which includes that of the uterus, cervix, ovaries, vagina and vulva) detected early, Dicey Scroggins thought. Regular office visits and frequent conversations with doctors can curb the spread of these cancers before they become aggressive and fatal, and as Dicey Scroggins learned, early detection is key.
As she geared up for six rounds of chemotherapy—a pre-emptive strike against recurrence and metastasis—Dicey and Nneka Scroggins saw a joint opportunity to raise awareness about women’s cancers. They learned that ovarian, cervical, and cancer in the lining of the uterus are among themost common cancers found in women. Also, they found that of the 500,000 women projected to die of cervical cancer by 2030, 98 percent of those deaths are estimated to occur in low- and middle-income countries because of barriers to quality health care and to what researchers cite as embarrassment surrounding discussions of below-the-belt health.
“[Gynecological] cancer is a huge problem in low-resource countries, particularly in Africa,” Dicey Scroggins says, citing a 2012 World Health Organization report indicating that sub-Saharan Africa has one of the highest incidence of gynecological disease in the world. The report also notes that, for instance, in a study of four West African countries, less than 1 percent of women had been screened for cervical cancer, resulting in a 21 percent survival rate in African women, compared with a 70 percent survival rate in women in the United States.
Findings like these led the Scroggins mother and daughter to connect with the African Organization for Training and Research in Cancer, which creates a viable research and clinical infrastructure for cancer treatment in Africa. Organizations like it, in collaboration with the American Cancer Society (pdf), submit data for the United Nations Millennium Development Goals Initiative, which strives to improve access to reproductive health care to women in the world’s poorest countries by 2015.
Nneka Scroggins contends that advocacy and awareness hasten tangible intervention and the lifesaving activities of building clinics and funding much-needed research. “It’s believed that [many] of the world’s cases of [gynecological] cancer will come out of Africa by 2020, so we want to do our part to sound the alarm on what’s happening,” she says.
Among the U.N.’s millennium-development goals are such key interventions as regular cancer screening, pregnancy care and family-planning services in low-resource locales. The success of this constellation of women’s health priorities is monitored through data on fertility rates; frequency of breast- and cervical-cancer screenings; mortality ratios; access to care before, during and after pregnancy (the U.N. notes that such reproductive health care in developing nations has increased from 65 percent in 1990 to 83 percent is 2012); as well as the number and distribution of reproductive health care facilities in these areas. “While we work to improve the lives of those in our neighborhoods, we have to educate others on gynecologic health and on treating underserved populations. This is the improvement effort we’re working toward,” Nneka Scroggins says.
In September the Scrogginses helped to lead Washington, D.C.’s participation in Globe-athon, the only worldwide movement designed to raise awareness about the prevention and early detection of gynecologic cancers. Such women’s cancers account for 19.1 percent of the world’s 5.1 million estimated new cancer cases, with African-American women recently found to have a higher incidence of cervical cancer than their white counterparts, often with the same access-to-care and early-detection issues affecting women around the world.
As part of this year’s Globe-athon events, the Scrogginses, both Globe-athon advisory board members, participated in a rally in Washington, D.C.’s Freedom Plaza and welcomed gynecologic researchers and practitioners during a Global Health Forum. Seventy-eight countries held more than 200 Globe-athon events in September, reaching more than 183 million people worldwide with Globe-athon messages. “Through Globe-athon, there’s a chance to save generations of women,” Dicey Scroggins says. “It fits so beautifully into what we’re trying to do.”
Now recurrence- and cancer-free for 18 years, Dicey Scroggins eventually traveled with her family to Kenya and Tanzania. The fulfillment of a lifelong dream had become a family affair, she says: “It was worth the wait.”
This article was published on The Root on Oct. 17, 2014.