The first time I meet all of the oncologists in Kenya is when the local office holds a scientific webcast. There are literally four to five medical oncologists, about the same number of radiation oncologists, and perhaps a dozen or so surgical oncologists who more or less handle the entire nation’s treatment of carcinoma (i.e. breast, prostate, colorectal, lung, head & neck, almost everything common), plus a few other things (some do hematology, some do sarcomas/orthopedics, and others presumably work with infectious disease specialists on the epidemic of Kaposi’s sarcoma related to HIV/AIDS prevalence). Combined, this handful of practitioners serves a population of 39 million, when there should be ten times their number if we’re using developed world standards. They should definitely never board the same plane together. It’s probably a good thing that as we drive into the hotel conference centre hosting this meeting, we are stopped at the boom (think swinging gate-pole, ubiquitous in Africa) for a bomb check of the car’s undercarriage. The guard uses a mirror on a giant bent pole, which looks similar to a massively blown-up dentist’s instrument. Open wide.
The main event begins. An eminent researcher announces from afar the landmark results of a major longitudinal study. The data are compelling and suggest there is room to change the current guidelines for long-term remission management of breast cancer and perhaps even the existence of a new biomarker. Yet beyond this provocative information in itself, discussion among the physicians in the room quickly makes it apparent that the science is of limited practical value to the everyday cases they see. The study followed overall survival, progression-free survival, and relapse rates among breast cancer patients, but was conducted in the West. This meant that virtually all of the patients were over 60 years old, generally with cancers detected early. As mentioned earlier, this is simply not the face of breast cancer in Kenya…(or Ghana or Nigeria or Uganda… see where I’m going with this?) The peak incidence appears to be around 35-49 years of age (not even bimodal to later life with age-standardized rates as I previously hypothesized), and several of the docs have told us that four in five of their patients are presenting with Stage III - IV disease, where the tumor is large (>5cm diamater) and/or the cancer cells have spread to the distant lymph nodes or beyond. The prognosis for this is extremely bad - whereas five-year survival rates after diagnosis of breast cancer in the US and EU hover around 90%, our limited registry data and extrapolated mortality are showing it’s more like 40% in Kenya and Ghana.
Overall, East Africa has among the lowest incidence rates (new cases per 100,000 pop.) of breast cancer in the world, but there’s something about SSA that clearly indicates a different underlying biology (and probably genetics) of the disease. Besides greater chance of cancer at a young age, the current data indicate women in SSA are likelier to have hormone-receptor negative breast cancer, more aggressive tumors, and very rare and invasive forms like inflammatory breast cancer. It is definitely established in the literature that qua diaspora, African-American women show somewhat similar patterns - lower incidence but much worse prognosis, in a nutshell. I wouldn’t be surprised at all if the H3Africa project finds big patterns of BRCA1, BRCA2, and p53 mutation in the populations here. Furthermore, I don’t fully buy the raw numbers on low incidence. Epidemiology is like Schrödinger’s cat sometimes - the social institution of opening the box up for observation will change the medical facts sitting inside. Proper registry surveillance has commonly led to a subsequent uptick in the number of cases from early detection. The apparent rates of breast cancer doubled between the 1960s and 1990s in Nigeria (Ibadan) and Uganda (Kampala), where some of the earliest registries on the continent were established. There is no way in hell this is demographic transition or biological environment change alone, certainly not considering the actual development variables (income, diet, urbanization, etc. in either country, compared to larger-by-far effects in BRIC). Our raw data from Nairobi researchers also suggests something else entirely in specific age brackets, although they still need to validate the findings.
So what does this all mean? Aside from the fact that I tried really hard not to blurt this all out at the daughter of an eminent US genetic oncologist who works in this field. By bizarre coincidence, the daughter turned up in Kenya at the webcast as a guest of her mother’s colleagues, while working on exciting non-medical ventures.
Part of it is a tragic pathobiology that hits the poorest part of the world harder with a “rich world” disease. But the bigger share of it comes down to education and resources.
I can’t do much about the former, but if our team can’t deliver to change the latter a little bit, then we don’t deserve to be here.
In Nairobi, Dr. K, a female oncologist, tells us about the struggles her patients face. There is the rural woman who was pulled away from treatment after her daughters heard false advertising about the side effect-less wonders of herbal medicines. There is another older patient who, in an almost shameful modesty and a desire not to appear as a burden with her disease, refused to reveal her diagnosis to anyone in her family, selling the small plot of land she had meant for her children to inherit in order to finance her treatment. This is fine since her grown children are doing well for themselves, but if this weren’t the case, this picture would’ve changed entirely. There is always the lower value of a woman’s health vs. anything else a male head of household might buy with the family funds. As Dr. K puts it, “in some of the villages, if you are a woman, you cannot even be seen eating an egg or eating meat. That protein is reserved for the men.” She recounts the past (and all-too often present) history of a woman with breast cancer in the rural areas, where 60-80% of the population lives. She wouldn’t tell her husband for fear that he would leave her, taking it as a sign of a moral curse or even a STD. If she was in a polygamous marriage, the other wives help take over the childcare and housework. Then the ill woman would go to her own room to be alone and die. These is not a terribly exceptional case.
Even though I have my issues with the “cancer-industrial complex” of Komen et al, I’m now more appreciative of the impact they make on our collective consciousness and they way they socially engineer the disease outcomes. Even if I’m skeptical of where some of the funds go, we should credit these movements for driving a dialogue of empowerment. It sometimes feels excessive in a place like the U.S. where there is an abundance of help, but the relative absence of support groups in Africa is a startling black hole considering all the odds against survival. The patient needs hope, and the woman needs the dignity of a fair fight. After I get back, I want to do something for Reach for Recovery (Gh), the Breast Health Foundation (Ke), and a few other survivor-led NGOs that I have had the privilege of meeting. They don’t have websites (yet), but in the meantime if you are interested, take my word that they are some of the worthiest organizations you could sponsor if you want to donate to the “fight against cancer” where it’s being most desperately fought.
In Ghana, we observe the proceedings of a multidisciplinary tumor board. One case has kept me up at night on the project ever since. A 47 year-old woman reported with multiple painful masses, serious ascites (swelling of the abdomen due to buildup of lymph fluid), and significant wasting and physical weakness. A chest x-ray showed she had pleural effusion (fluid in her lungs) and the full workup found her in T4NXM1. In other words, her tumor was large and had probably spread to her lymph nodes and there was cancer in her lungs, meaning this woman who is younger than my mother could likely be dead by the time I finish this project in mid-December. She was already at ECOG performance status 3, meaning she needed help to make it out of her bed, much less into the clinic. This never had to be the case, in Ghana or anywhere else.
The patient had been comparatively fortunate enough to live within ten kilometres of this comprehensive cancer centre, one of two in the country, meaning she didn’t have to cover exorbitant logistics and costs of travel and accomodation to get care. Yet the records showed an apparent biopsy specimen in July that wasn’t reported until September. A lump had been noticed from four months prior, and most unsettling of all, she had been treated for endometrial cancer a month before that. These things can happen anywhere, but I can’t get it out of my head that something could and should have been caught during the routine intake exam, the visit for DD&C to confirm the endometrial cancer. Something could and should have been done to get that biopsy result within a week. Something has to have been possible, but now this woman’s cancers have burned her body away from the inside, leaving a frail and frightened patient. A photograph is passed around, showing her just such months ago. She was standing proud and vibrant under sunlight on green grass with a younger woman around my age. Given the synchronous tumors, the doctors around the room suspect a genetic predisposition, maybe BRCA2 along with p53. I ask them if any counseling or education will be given to the daughter from the photograph. It will, but it’s not enough. Dr. B, the radiation oncologist in charge of the meeting turns around and looks at our team.
“Now you know why you are here.”
