“How long have you had the mass in your breast?” I ask Natalie, a 43-year-old woman, in Creole.
“Some time,” she replies, an indicator of the Haitian measurement of time. I prod and she eventually reveals that she has had the tumor for about a year. Over time, I gather from her the narrative of the last year of her life — a journey of misunderstanding and fear, difficulty navigating the Haitian healthcare system, and a desperate lack of money.
Now, her right breast is twice the size of the left one. It is firm and rubbery and the skin over the mass is red, cracked and peeling. Her nipple is retracted, inverted in on itself and barely visible now, surrounded by the tumor growing up around it. There are rubbery nodules in her right armpit — the tumor has spread to the lymph nodes closest to the breast. The skin over her entire body is ashy to the point of scaling, perhaps an effect of a paraneoplastic syndrome symptoms caused by cancer outside the tumor’s actual location.
Her eyes watch me as I lift her right breast repeatedly, trying to determine if the tumor is fixed to the wall of the chest, and therefore inoperable. The breast weighs at least 15 pounds, but I’m able to squeeze the skin together on the side closest to her ribs, meaning that the surgeons could likely perform a mastectomy to remove her entire breast.
The first question to come to mind is simple and inevitable, but is so often tinged with judgment: Why did she wait so long?
Even in developed countries there are women who, for complex and poorly understood reasons, do not seek care for breast cancer and simply ignore a tumor as it grows. In New York City, a kind and generous patient of mine waited until the tumor in her breast broke through the skin and began to fester. She may have been afraid to hear the word “cancer” from her doctor and chose to ignore it. Or perhaps she didn’t want to undergo all the harsh treatments without an immediate family to care for her. Or maybe she simply felt close enough to God to let her time on this earth expire. The tumor eventually metastasized to her lungs, and she came to the emergency room gasping for air. I met her in the ICU after she was placed on a ventilator and was sedated with a tube down her throat and unable to answer the question of why she had waited. I talked to friends from her church choir group, the closest thing that she had to family, to determine if she would have wanted to remain on the ventilator in this situation. The entire medical team, the hospital ethics committee and two sopranos decided she had made the decision to let nature take its course long before she entered the ICU. We removed her from the ventilator, increased the morphine drip and watched her breathing slow until it stopped.
She is the exception in the United States, but in Haiti her story could be told by the thousands of Haitian women who develop breast cancer each year. Decades of breast cancer awareness in the U.S. has trained women to fear even the smallest abnormality of the breast. Mortality from breast cancer plummeted before the advent of many modern forms of chemotherapy or hormonal therapy and the primary reason was the awareness campaigns that began in earnest in the 1970’s. Early detection means saving lives; even a low-tech treatment like a mastectomy can cure up to 50 percent of early cases without giving any chemotherapy or radiation. Unfortunately, there is very little awareness among Haitian women, and they usually don’t seek care until there is a mass the size of a baseball.
Natalie, my Haitian patient, felt something growing in her breast but didn’t seek medical care for several months because she wasn’t sure what it was. She thought that it might be an infection and would go away. Some friends thought that it was tuberculosis; another said leprosy. She was careful not to share her illness with too many people for fear of being ostracized. When she finally went to see a doctor, he told her that it was breast cancer and that he couldn’t do anything — no biopsy, no attempt at a mastectomy, no referral for further care. She went to another doctor who informed her that she needed a mastectomy, but she couldn’t afford the $500 cost. After a few more months of tumor growth, she heard of Project Medishare’s charity hospital and came to the wound care clinic after the tumor had broken through the skin and caused oozing.
We performed the mastectomy for a token fee (anything that is free has no value). The first time that I saw her after the surgery, she lifted up her shirt and proudly showed me the well-healing scar. “My tumor is better,” she beamed, but the mass in her armpit was still there so we discussed the importance of chemotherapy. I referred her to a support group for cancer patients which has wealthy benefactors who help to pay for chemotherapy, but treatments are still so expensive that she delays them while she earns and borrows the rest of the money. Partners in Health has an excellent breast cancer treatment program in the rural Central Plateau, but it is over two hours by bus outside of Port-au-Prince, and the time and distance hampers access for many patients.
I’ve seen a few dozen cases like Natalie’s in the last six months, one of the principle reasons that Project Medishare will start giving chemotherapy for breast cancer in Port-au-Prince in a few months. Right now, we’re raising money, buying chemotherapy, training nurses and shoring up partnerships with other Haitian organizations interested in seeing breast cancer treated on a large scale in the capital. It’s an exciting time, but also frustrating that we can’t start tomorrow.
Three months later, Natalie complains to me of the tumor that still protrudes out of her right armpit, and displays a new rubbery mass in her left armpit. She has collections of pus growing under her skin that are painful, further evidence that the tumor is expanding within her chest wall, tearing up the healthy tissue as it does. She needs chemotherapy to stem the tide.
“When is your next chemotherapy visit?” I ask.
“Next week. It will be my third time getting the medication.” She should be on her fifth cycle of chemotherapy at this point. She is in the most advanced stages of breast cancer and has no hope for a cure even if we had all the resources of the developed world. Nonetheless, the chemotherapy will ameliorate some of her symptoms, and will undoubtedly prolong her life.
Our chemotherapy program won’t start until July, too late to help Natalie. I drain the pus out of the pockets in her chest wall, and the wound care nurses dress the wounds. I give her some antibiotics to treat the remaining infection, tell her that I’ll see her next week, and I go back to work in the office, trying to build a program that will help the next woman like Natalie before it’s too late.
Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare which will offer breast cancer treatment starting in July. See his An American Doctor in Haiti blogs.