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HomeLongformCervical cancer: 100% preventable, but surrounded by stigma

Cervical cancer: 100% preventable, but surrounded by stigma

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“But mom, people with cancer die.”

That’s what Ismael, eight years old, told his mother, Arelys Badilla Bosa, when he heard her say that they had detected cancer in the cervix: that is, cervical cancer.

What Ismael did not know is that the survival rate from this cancer in Costa Rica is 78%, well above the Latin American average of 59.5%. What’s more, mortality from this cancer has decreased by 39% since 200 —that is, despite the strong stigmas surrounding this cancer, more than any other in the world, more and more women are being diagnosed in time for a cure. That was exactly what happened to Arelys.

In September 2020, Arelys received the news from her Basic Team for Comprehensive Health Care (EBAIS) that her Pap test was altered. On October 6th, during a colposcopy at the Max Peralta Hospital in Cartago, a biopsy was taken of a 2 mm lesion on the cervix. And on November 27th, she was officially diagnosed with cervical cancer.

In the months that followed, Arelys had to undergo—well, “everything,” she says. First, a series of exams in late 2020 to determine if the tumor had compromised other organs. With a clear picture of other tumors, treatment for her cancer began on February 4th with an operation that indicated that she should not undergo a hysterectomy. Then four chemotherapy sessions, 22 radiotherapy sessions, and four sessions of brachytherapy (a treatment through the vagina that applies radiation to the cervix, vagina, and uterus) all between April and June 2021.

Finally, on October 4th, Arelys received the news that her tumor had disappeared.

“You can see the advantage of having found it in time,” says Arelys, despite the “roller coaster” of emotions and pain that she experienced for just over a year. Of course, that ride is not quite over. Although she no longer has this tumor on her cervix, she must continue to be closely monitored for the next five years. She’s still waiting for the result of her most recent Computed Tomography (CT) scan to confirm that there are no tumors in other parts of her body, and she must also have a Pap smear every six months for five years until the results confirm that her cancer has not returned.

But what is cervical cancer?

Arelys Badilla Bosa, 43, works as an insurance agent. She used to travel to San José every day, but has been working from home for two years. Arelys says that the COVID-19 situation helped her overcome her illness, in a way, because she didn’t have to talk to as many curious people about her situation during treatments or her trips to and from San José. In addition, her hospital stays were quicker and less chaotic. Mónica Quesada Cordero / El Colectivo 506

A disease with a stigma

Like any other cancer, cervical cancer occurs because some cells begin to multiply in an irregular and uncontrolled way. As we reported in our first installment of The Future of Cancer, there are many reasons why this behavior of the cells begins, but in the case of cervical cancer there is only one: lesions caused by the human papillomavirus (HPV) on the cervix.

However, as Dr. Alejandro Calderón from the Costa Rican Social Security System (CCSS, or Caja) and its Strengthening Comprehensive Cancer Care project, there are 200 types of HPV that circulate among people throughout the world. Many of these cause cutaneous lesions, such as small ones on the hands: that is, they are housed in the skin cells, and that is where they generate lesions. Forty of those 200 HPVs live in mucus, and can be found in the vagina, penis, mouth, and anus. And of those 40, 14 can cause damage or injury that could lead to cancer, known as high-risk HPV.

However, of those 14, only two varieties, HPV 16 and 18, are responsible for 70% of cervical cancer. In very rare cases, high-risk HPVs cause cancer in other parts of the body such as the penis, anus, vulva or vagina.

Like any other virus, for example flu viruses, HPV lives with and among us.

Arelys Badilla Bosa rings the bell on the last day of chemotherapy at the Max Peralta Hospital in Cartago. Courtesy of Arelys Badilla Bosa / El Colectivo 506

“Having an infection [from the virus] is not a cancer sentence. It is not a death sentence,” says Dr. Alejandro, explaining that HPV in general, but more importantly low-risk HPVs, are very common. “Out of every 10 sexually active people, eight have it, had it, or will have it. Most HPV infections are transient.”

That is, 80% of the sexually active population in Costa Rica has carried, or will carry, an HPV at some point. As the doctor explains, as with other viruses, the human body eliminates the vast majority of these infections, generating antibodies that can act as a defense in future infections.

“Low-risk HPV forms genital warts,” says the doctor. “Those are burned off; they are removed.”

Low-risk HPVs can also cause mild lesions, known as mild dysplasias, which do not develop into cancer or warts and may even disappear over time, without the need for treatment. Only severe dysplasias or severe injuries could cause cancer.

“HPV is not for life. The body can [often] get rid of it. 70% of infected people eliminate it within 24 months; 90% at 36 months no longer have the virus.”

However, although practically all sexually active Costa Ricans have been exposed to HPV, and most adult women have had at least one Papanicolaou in our lives, there is not enough talk and education about this virus, the diseases it causes, or the fact that all of us have have carried some type of HPV.

Screening of cervical cáncer

The Ministry of Health, in its Technical standard for the prevention of cervical cancer,establishes as a screening program for this cancer that all women over 20 years of age who have become sexually active, insured or not, should have a Papanicolau every two years. In private practice, it is common for gynecologists to perform the test on their patients every year.

The Papanicolaou is a cytological test that allows to detect if there are cells in the cervix that already present alterations caused by HPV; it is not a test that detects the presence of the virus as such. These lesions, if detected early, are usually precancerous.

Like prostate cancer and colorectal cancer, if a woman develops cervical cancer after an HPV injury, it will be slow and silent. It takes between 10 to 15 years for a lesion caused by HPV to become cancerous. Therefore, this cancer occurs more frequently in women between 40 and 60 years of age.

“Today, with the knowledge we have, no one should be dying of cervical cancer,” says Dr. Alejandro. “However, in this country more than 140 women die [from this] every year, and we have more than 300 cases.”

Finding the disease early depends on having a Papanicolaou done at the correct frequency. Why the correct frequency? Because this cytology exam is low sensitivity. This means that it might not detect a lesion when it is performed, but performing the exam at least every two years increases the chance of finding the lesion in time.

“The Pap smear works as long as the person is consistent in taking the exam,” says the doctor.

Arelys remembers that in September 2020, when her cancer was diagnosed, she posted what was happening to her on her Facebook profile. Many of her friends wrote to her in surprise.

“‘I have not had the Papanicolaou for five years,’” Arelys recalls reading in the messages. “Another, ‘I have not done it for three years’, another, ‘I have not done it for seven years.’” So she encouraged them to get their tests done.

“I told them ‘Send me the result to see if it is true that you went,’” she sais. “But what is happening? Why do we skip this test so often?”

ESTAMPA project: looking for the ideal combination for screening

Lauren Rodriguez López began her career in cleaning services, but little by little, she was preparing for a change: for two years now, she has been an office worker. She is 39 years old, has been for 22 years, and has two children, 16 and 10.

She’s also another cervical cancer survivor.

In September 2018, she visited the EBAIS in her community. They asked her if she wanted to participate in a new screening program that sought to detect cervical cancer early. At the time, Lauren had not had Papanicolaou in 12 years.

Photograph of Lauren during treatment, accompanied by her sister. Lauren was diagnosed with cervical cancer in 2018. Today, she is a survivor. Courtesy Lauren Rodriguez López / El Colectivo 506

“I was always looking for an excuse,” says Lauren. “I knew that I had not had a Papanicolaou for many years, and that was always the fear: ‘If they’re going to tell me that something is wrong, it’d be better not to go.'”

But because she happened to be there that September, she agreed to take a similar test after being told that this time they were not going to administer a Papanicolaou, but rather a test to determine the specific presence of HPV, which is the first step in the ESTAMPA program.

“With new technologies, we are now going to determine who has the virus so we can better examine them and see whether they have precancerous lesions,” explains Dr. Alejandro Calderón, who is also the principal investigator in the EMulticenter Study for Cancer Screening and Triage project. cervix with human papillomavirustesting or STAMP/a>.

This program was created by the World Health Organization (WHO) and is being carried out in several Latin American countries with a total of 50,000 women in 14 health centers. As of 2016 and in staggered waves, Costa Rica has established tests to detect HPV 16 and 18 infections in 10,000 women between the ages of 30-64 in the Central Pacific area, which has the country’s highest mortality rate from cervical cancer. Women who test positive will undergo a colposcopy.

In other countries, other types of studies will be carried out, beginning with detecting the HPV virus. This will ultimately determine which of the study groups is the most effective in detecting precancerous cervical lesions caused by this virus.

Collage of photographs of Lauren’s arms during her treatment. Courtesy Lauren Rodriguez López / El Colectivo 506

Dr. Alejandro explains that the HPV test they are using is a more expensive exam, but has 95% sensitivity for detecting high-risk HPV and 80% for detecting precancerous lesions. This avoids misdiagnoses and overtreatment. Because cervical cancer develops so slowly, this test is recommended every five years, if the results are negative.

The doctor explains that the WHO / PAHO recommends HPV population screening, and the Caja has started that process with four Health Areas from the Chorotega Region: Cañas, Tilarán, Liberia and Carrillo. The Caja plans to expand over time to the rest of the country.

So far, ESTAMPA results in the Central Pacific region have detected the HPV 16 or 18 virus in 13% of the 8,800 women screened. Of those, approximately 3% have had a high-risk lesion.

“Of those 13 out of 100, 11 did not have a high-risk lesion at the time,” explains Dr. Alejandro, “After a year and a half, we see them again, and in 65-70% of them, the body has already taken care of removing the virus.

“In the project we detected eight women with cancer who had normal [previous] Papanicolaus,” says the doctor. Lauren was one of these, but her previous Papanicolaou was 12 years before.

The incidence of cervical cancer in Costa Rica is 12 women per 100,000, a value that has decreased by 50% in the last 20 years. Mortality is 6 out of 100,000 women. However, the WHO’s goal is that by 2030, the incidence of cervical cancer in the world will be 4 women per 100,000, and mortality will be almost nil.

“It sounds almost impossible,” says Dr. Alejandro.

So how is cervical cancer prevented?

There’s a clear path towards the WHO’s ambitious goal, according to Dr. Alejandro. That path is to have 90% of the female population vaccinated, to monitor at least 70% of women between 35 and 45 for the HPV virus, and provide adequate treatment for at least 90% of women with precancerous and cancer lesions.

Programs such as the Caja’s existing Papanicolau screening, and new programs such as ESTAMPA and the HPV detection pilot in the Chorotega Region, are part of these efforts on a national level.

Lauren’s and Arelys’ stories are examples of timely care.

In December 201, Lauren was diagnosed with cancer in 80% of her cervix. After many tests to rule out metastases, between February and May 2019 Lauren received five sessions of chemotherapy, 30 sessions of radiation therapy, and finally five sessions of brachytherapy. She has been monitored for two years and is still cancer-free.

“Everything was super fast,” she says.

As a result of her experience, Lauren did not hesitate to take her daughter for an HPV vaccine when she had the opportunity. At 16, she already has both doses, thanks to her participation in a research project.

Costa Rica began immunizations against this virus in June 2019. Public resources for this effort are finite, which is why it has been focused on 10-year-old girls.

In June 2020, the Caja reported that in the second semester of 2019, it had achieved coverage of 98% of the target population with the first dose of the HPV vaccine. By the date of the report, 80% of the target population had received the second dose as well. The application of the first dose of this vaccine took place in schools. The second dose is applied in the EBAIS that corresponds to each girl; it is the parents’ responsibility to bring their daughters in for the vaccine.

In that same report, the Caja reported that it had managed to vaccinate only 15% of the target population for 2020, since the closure of schools due to COVID-19 prevented the application of the first dose as planned.

The national vaccination standard recommends the vaccine for girls and women between 9 and 26 years old; it can also be applied to children and adolescents between 9 and 15. People can also buy the vaccine in the private sector for children. The vaccines are available in the country’s largest pharmacies, and the price varies widely, depending on the kind of vaccine being offered. They range from 20,000 to 65,000 colones per dose (approximately $32-$102); depending on the kind of vaccine and the age of the person, two or three doses are needed.

“It is important to vaccinate men, as well, so that men will not transmit the virus to women,” explains Dr. Alejandro. “Also, [HPV] is related to penile cancer, anal and oropharyngeal cancer, so it is indirectly protecting [men] against those cancers as well.”

The HPV immunization vaccine was developed to create defenses against HPV 16 and 18, reducing the probability of generating cancer by 70%. This means that early detection programs for HPV lesions must continue, even when the vast majority of adult women have been vaccinated.

This is why Arelys has a message for women: put yourself first on your list of priorities.

“It’s so important to do everything on time,” says Arelys reflecting on her family and friends who are not consistent in their medical checkups. “As a woman, you let yourself slide. You are the last to get new clothes; you are the last to sit down to eat.”

Arelys is a cervical cancer survivor. She was diagnosed on Nov. 27th, 2020. She had to undergo surgery, followed by chemotherapy, radiation, and brachytherapy. On Oct. 4th, 2021, her doctors informed her that her tumor was gone. Mónica Quesada Cordero / El Colectivo 506
Mónica Quesada Cordero
Mónica Quesada Corderohttp://www.mqcphoto.com
Mónica (Co-Fundadora, Editora Gráfica) es una galardonada fotoperiodista con 15 años de experiencia en el desarrollo de proyectos fotográficos en el área editorial, retrato, vida silvestre, comida y arquitectura. Además, cuenta con experiencia en escritura y redacción y una maestría en Producción Audiovisual y Multimedia. Mónica (Co-Founder, Graphic Editor) is an award-winning photojournalist with 15 years of experience developing photographic projects in the editorial, portrait, wildlife, food and architecture areas. In addition, she has experience in writing and a master's degree in Audiovisual and Multimedia Production.

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