One cancer is almost 100% preventable. And Chicago is making a move to eradicate it
"It happens when you least expect it. ... It was my last semester before it was time for me to graduate. That's when I found out."
Morgan Park resident Angela Williams was 40 years old in 2015 when she received a diagnosis of cervical cancer following a routine gynecological checkup.
"There are so many emotions when you hear the word cancer the first time around," she said. "It was like, 'OK, we can give you a hysterectomy, and then you'll be OK from there.' I was upset, but I thought there are a lot of people who don't make it. So take this surgery, and do what you got to do."
Williams, 44, now a CTA bus driver, has had cancer two more times since then, both in 2017—recurrences involving her colon and lymph nodes.
"The second time I had cancer was the hardest time because I had to go through chemotherapy and radiation treatment. And within weeks, I lost a lot of weight. I went through a lot the second time, so hearing that it came back the same year, only months after was scary," she said. "It was hard because I did have my days where I felt that I just can't do it."
January is cervical cancer awareness month and Williams is just one of many women whom the new initiative Equal Hope (formerly known as the Metropolitan Chicago Breast Cancer Task Force) aims to help. Created in 2008, the health equity nonprofit network of health care providers, community leaders and advocates led efforts to reduce breast cancer deaths for the city's African American female population (down from a 62% death gap to a 39% gap over the past decade). The group is now setting its sights on eliminating cervical cancer disparities and ultimately eradicating the disease in Chicagoland, according to Anne Marie Murphy, executive director of Equal Hope.
Equal Hope's growth coincided with the increasing anger of Dr. Summer Dewdney, assistant professor at Rush University's Medical Center's Division of Gynecologic Oncology, who was seeing severe cervical cancer cases in her practice.
"A lot of my patients with advanced cervical cancer come through the emergency room, so they come to us already with this giant mass and no idea what's going on. I just got mad and knew about Dr. David Ansell's breast cancer work, so I just knocked on his door and said, 'Hey, can we do this for cervical cancer?' " she said. "Because this shouldn't be happening. And it was happening to women of color almost all the time."
Ansell, senior vice president for Health Equity at Rush and Equal Hope's founder and board president, described the commitment to eradicate cervical cancer in the city as "an achievable goal." Australia expects to eradicate cervical cancer by 2028, and England is reporting fewer HPV infections since vaccinations were introduced in schools.
Equal Hope's new campaign will help uninsured, underinsured and publicly insured women get quality screenings, diagnoses and treatment for cervical cancer. And it will engage in quality measurement and improvement around the cervical cancer health system. Equal Hope announced its mission and new name in November with cervical cancer mortality data that showed:
- Chicago's rates of cervical cancer incidence (occurrence) and mortality are higher than national averages. The incidence rate is 39% higher, and the death rate is 60% higher, according to the National Cancer Institute.
- There are large disparities within Chicago when it comes to cervical cancer. For instance, a black woman or Latina in Chicago is almost three times more likely to die of cervical cancer than a white woman, per data from the Chicago Department of Health's Chicago Health Atlas.
"The cervical cancer disparity gap is going in the wrong direction. So we thought it kind of made sense to do this since we already worked with breast cancer," Murphy said. "A woman in Washington Park is 85 times more likely to die of cervical cancer compared to a woman in Hyde Park."
"That to us was most striking," said Dr. Nita Lee, assistant professor of obstetrics and gynecology at UChicago Medicine and an Equal Hope board member. "Young African American women are dying of this disease, and they shouldn't be."
According to information provided by Equal Hope:
- Cervical cancer, unlike other cancers is not hereditary and is almost 100% preventable.
- Almost all cervical cancer is caused by the virus known as human papillomavirus (HPV), which is transmitted skin to skin through sexual contact. And no, condoms do not completely eliminate the risk of getting HPV.
- It is estimated that 80% of Americans will be exposed to the virus in their lifetimes.
- You don't have to have a lot of sexual partners to be exposed to HPV. About 40% of women with just one sexual partner get HPV within two years of becoming sexually active.
- HPV can stay hidden in the body and become active up to 20 years after it first entered your body.
- There is more than one strain of HPV, but the surest way to prevent cervical cancer and other cancers caused by HPV is vaccination for girls and boys starting at age 9. The virus can also cause cancers in men related to sexual activity. And men can transmit HPV to their sexual partners.
"This is a vaccination to stop patients from getting cancer," said Dewdney, Williams' oncologist and an Equal Hope board member. "It's two shots if you're under age 15, but if you wait until later, you have to get three shots."—A combination of vaccination and regular screenings for precancerous lesions of the cervix starting at age 21 (via Pap smears) is recommended. And women over age 45 still need to get regular cervical cancer screens. Forty one percent of women who die from cervical cancer are 64 or older, Dewdney and Lee say.
You had a hysterectomy and don't think you need to go for a screening? You have to know if your cervix was removed with the hysterectomy. Talk to your doctor.
And even though you've received the HPV vaccine, it doesn't mean you don't need to keep up with Pap tests.
"As clinicians who see women through their 40s, 50s, 60s, 70s and 80s, having an annual exam really does help you catch a lot of other things that women have, including other cancers and other issues. The PAP is an important part of that," Lee said.
Most women diagnosed with cervical cancer in the U.S. have not had a Pap smear in at least five years, and symptoms of cervical cancer can present as vaginal bleeding, bleeding after sex, pelvic pain, leg swelling, blood in urine and renal failure, Lee said.
"Lots of people have this idea that one almost has to be a sex worker to need this. But no, that's not true. This is like the common cold," Murphy said.
"It's a below-the-belt cancer that nobody wants to talk about," Lee adds. "The women that we see with this cancer are either women who haven't been in for a long time because of (societal) barriers or their lack of thinking that these screenings apply to them."
"When we find a new cervical cancer diagnosis, one of the questions I ask: 'Have you been getting routine pelvic exams or Pap smears?' And close to 100% of the time, they say my last Pap was 10 years or 20 years ago," said Dewdney. "The reasons for that are many: 'I lost my insurance; I've been taking care of my sick parents. I knew there was something abnormal, but I never followed up.' "
Lee said people with insurance are also underutilizing screenings. She said that after age 30, a Pap test and an HPV test are suggested every three years, and after age 30, screenings can be done every three to five years. After age 65, screenings can stop only if there's a history of normal Pap smears.
Dewdney adds that a pelvic exam should not be confused with a Pap test. Pelvic exams are about looking for interior problems, but a Pap takes samples of cells for cervical cancer screenings.
"I see these young women who are in their 30s or 40s with these horrible cervical cancers—advanced stage 3, 4," Dewdney said. "These are diseases you should be seeing in Third World countries or where they don't have health care. Every woman that we see is a missed opportunity that somehow the system has failed. We want every woman to know that they should be screened."
And that's where Lee, Dewdney and Murphy are hoping Equal Hope inspires follow-through with screenings. The physicians reached out to their counterparts and clinicians at other area hospitals to participate in the endeavor. According to Dewdney, over two dozen health care professionals have already attended meetings—people passionate about eradicating cervical cancer in Chicago. The team plans to do outreach, to educate and help those in need, while also capturing information on quality assessment, measurement and improvement for health systems for this form of cancer. In essence, it hopes to change the culture of how cervical cancer is perceived, talked about and treated.
"We're all thinking through three areas of intervention: working with other groups in regards to vaccinations, trying to understand our own primary care system here in Chicago and how it facilitates or is a barrier to accessing the right care for cervical cancer, and thinking through the treatment side in regards to ensuring women get the highest quality by today's guidelines of care," Murphy said. "There's going to be a whole variety of cancers that this will be a model for. We're going to learn a lot through this, in addition to hopefully eliminating cervical cancer."
As for Williams, she's cancer-free. And given her unique cancer journey, she wants to do what she can to raise awareness about cervical cancer—talking to young people, serving as an advocate so others with questions can come to her, even starting her own foundation.
"Nobody wants to talk about it, but we should talk about it," she said. "If people look at me a certain way because I had it, then so what? Because how many lives can it save by me talking about it?"
Her advice to others about cervical cancer: Go to the doctor regularly. She never missed a doctor's appointment, and she thinks that's what saved her life.
"Some people are afraid to go to the doctor because they don't want to know or deal with the results. That's the worst thing you can do to yourself," she said. "When you hear the word 'cancer,' it's like am I going to die? But I'm like, 'No, don't bury me.' "
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