I want to tell Ana’s story for several reasons. First, because I’ve been deeply impacted by her coming into my life. Second, her story poignantly brings to life the reality of healthcare disparity in the developing world. And third, I want to give whatever voice I can to someone who has been rendered voiceless by her circumstances.
Ana is a 43-year-old indigenous Maya woman from a municipality next to Concepción, where ACAM clinic is. She has two children and is already a Grandmother. She has minimal education and speaks Mam, the Maya language native to this region. She understands some Spanish but is unable to speak it, as indigenous Maya people typically only learn Spanish in school.
Ana arrived to ACAM for a consult one day accompanied by several of her family members. She appeared extremely thin and sickly, but had some color and could walk by herself. She complained of vaginal discharge. The two ACAM midwives and I set up to perform a pelvic exam, thinking she might have a vaginal infection or an STD. I explained that I was going to do a speculum exam as the midwives translated to her in Mam. As we placed the speculum, a strong smell permeated the room and she began to bleed profusely. Large blood clots began filling my metal instrument and pouring out onto the floor. I had no visualization of the cervix as she continued to bleed. I took out the speculum and quickly performed a bimanual exam (feeling the uterus from inside with my hands) to give me some idea of what was going on. As I took out my hand, pieces of tissue from her cervix had come off in pieces onto my gloves. It was unlike anything I had ever experienced.
“You need to get to the hospital right away”, I told the patient. I explained that she may need surgery quickly to remove her uterus and that I suspected she had cervical cancer. She looked distressed, but not surprised. She wasn’t able to communicate what she was thinking, but once we stopped the bleeding and got her cleaned up, I went back to the waiting room where her family members were. It was then that her son in law told me in Spanish that they had already been told she has cancer and that it’s likely incurable. I silently asked myself why they hadn’t mentioned that in the first place, but held my tongue as they explained to me that another doctor had told them they needed more advanced treatment in Guatemala City, but that they didn’t have the means. I later learned that the only high-level cancer treatment center in Guatemala is called the INCAN, located in Guatemala City, about 4.5 hours from Concepción. A family with limited resources can scarcely afford the bus fare to get there, much less medical treatment and lodging and food for the family members.
Completely at a loss for what to do, I urged the family to at least take Ana to the general local hospital in Xela for further evaluation. I sensed that my pleading and urging was in vain as I frantically wrote up a referral for them to take to the hospital, which they accepted but never used. The family left. As I reflected on it for the rest of the day, I painfully concluded that this patient would likely go without treatment or even pain medication. She was essentially condemned to die slowly and painfully, a forgotten victim of an extremely preventable disease.
She was never far from my mind in the weeks after her visit. We called the family to check in but they never took her to the hospital. It wasn’t until the next month that I saw her again. The ACAM midwives and I took a cervical cancer screening course in Xela in October (described in my last post) and the team teaching the course told us on the first day that if we knew anyone with suspected cancer, that we could bring them in for screening and biopsy and that their treatment could be covered by the organization. Ana rushed into my mind and I exchanged looks with Gricelda, the midwife who was with me during the day Ana visited ACAM. Gricelda called the patient that day and arranged that the family would bring her in later in the week.
She arrived to the course accompanied by 5-6 female family members, including her adult daughter. Andrea, an American OB/Gyn who works with gynecological cancers took Ana to the exam area, accompanied by myself and Gricelda, who translated in Mam. As she got undressed I saw that she was now using diapers, due to the bleeding and discharge that had worsened. She looked thinner and sicker than the previous month. The smell was overwhelming as she undressed. Ana winced in pain as Andrea performed a pelvic exam. I watched Andrea’s face fall and she was silent for some time. “A complete fistula”, she told me, “and the cancer has spread throughout her pelvis”. That explained the smell. Ana’s cervical cancer had advanced and destroyed the tissue separating her vagina from her anus. It turns out her discharge was actually feces coming through the vagina as she no longer had an intact perineum. She then obtained the tissue sample for biopsy. Andrea struggled to maintain her composure, clearly impacted profoundly by the patient’s situation. As we got Ana cleaned up and dressed, Andrea gave her a long and firm hug.
We talked outside to discuss the exam and findings with Ana’s family. It was hard for me to tell if they grasped the situation, especially since the conversation was in Mam. Most people, particularly those with little health education, don’t realize that cervical cancer is a sexually transmitted disease, which is caused by several strains of the HPV virus. Since all of Ana’s family members who had come were young and middle-aged women, we enthusiastically told them to stay and get their cervical cancer screenings, as we were offering this free service all day long. They looked at each other and giggled, but didn’t respond. We explained that Ana’s disease was completely preventable if they would just get screenings every few years! They kept laughing as if embarrassed and silently shook their heads no. I couldn’t believe it. Here was their relative, dying before their eyes, and yet they still felt too embarrassed or ashamed to get a pelvic exam. This just couldn’t be. It was time to bring in the big guns, I thought. I went to get one of our oldest and most influential midwives so she could speak with the family. Age correlates with respect around here, so I thought we might stand a better chance of convincing them. Azucena spoke with the family for some time, explaining the importance of screening. Still no luck. The family left with Ana, who we promised to contact with her biopsy results within a few weeks. In the meantime, we would work on getting her pain medication.
Several weeks later, Ana’s biopsy result confirmed squamous cell carcinoma of the the cervix. The Guatemalan doctor from the cervical cancer screening course explained that the organization would be willing to pay for her cancer treatment in Guatemala City, but to get in the door Ana would need a panel of blood work and imaging. We called Ana and I went with Gricelda to her home to discuss her options. She was bed-ridden and weaker still and could no longer walk without assistance due to swelling and pain in her feet. I explained to her that the organization was offering to pay for her treatment, but that I couldn’t guarantee that treatment would be effective given the advanced nature of her cancer. After our conversation, we decided that we would start with the blood work and imaging here in Xela, and depending on those results, we could re-evaluate whether attempting treatment in Guatemala City was worthwhile.
About a week later, we picked up Ana from her home in the ACAM van and took her to the Xela general hospital. No longer able to walk at all, we carried her to the van in a blanket. It was clearly a painful and probably humiliating process for her as we carried her into the hospital. Our ACAM family practice doctor drew her labs and we inserted a urinary catheter to obtain a urine sample. Her urine looked like syrup and the smell was overwhelming. Her kidneys were likely failing. Thankfully, they gave her a shot of morphine. Later that day we got her results. Her liver and kidney levels were abnormal. She was severely anemic, at the level where a patient in a US hospital would receive a blood transfusion. Her platelets were 38,000. This is extremely low, indicating her bone marrow has been affected by the cancer. No doctor would be likely to treat her with platelets at that level because if she had any bleeding, her blood would not clot and she would bleed out quickly. I called Dr. Andrea back in the states and discussed Ana’s results with her the next day and she confirmed that the best path for Ana is not treatment, which would in fact be cruel to put her through. She needs to be kept as comfortable as she can and is not likely to live much longer. She returned home.
So far, I have been able to get Ana a prescription for Tramadol and a fairly weak narcotic through our ACAM doctor. My attempts to get morphine have been unsuccessful as it is extremely expensive and tough to obtain. We are working on getting economic support from the cervical cancer screening organization to buy her much stronger medications, like a round the clock fentanyl patch. What Ana truly needs is hospice, so she can die with dignity and some level of comfort. However, hospice doesn’t exist here in Guatemala and much less for a family who can’t afford to pay.
My experience with Ana gave me an entirely new perspective on cervical cancer. I think back to the number of pap smears I have done on my patients, probably at least a thousand. We take these screening measures for granted and rarely think about the fact that they are saving our lives. I think about my own HPV vaccine, something that has likely protected me from having abnormal pap smears myself, something that young rural Guatemalan women will likely never hear of.
Ana’s story is a real-life reminder of the importance of the difference we can make as women’s healthcare providers. Our ACAM midwives, armed with the knowledge obtained from their cervical cancer screening course, now have to fight to help people understand why this is important. They can save the lives of women just like Ana, but only through education will women show up and shed the shame of having the test. Please keep Ana in your thoughts in these weeks or months to come.