One of the things I like about being a surgeon is that the primary objective of my job is to help people. Most people I know like to help others and try to do it through their work but it’s often not the purpose of their work. I go to work every day with the purpose of helping people, not hitting a home run or making a movie or managing a project or picking a winning stock or winning a legal argument or writing a report or making a sales quota. I’ve done this job every day for so long that I have come to take it for granted that I will help the patients I see. So it is all the more difficult for me when I come across a patient that I can’t help at all.
Last week I was consulted in the Emergency Room about a 22-year-old man who came in for help with progressive swelling and pain near his right knee. Standing at his bedside I could see his knee was swollen to at least twice its normal size. In French, I asked him how long this had been going on for. The Congolese doctor on ER duty, Dr. C, translated the question into Swahili as well as the reply back into French. One month. I examined his knee which was firm and warm but not tender to the touch. With Dr. C as a translator, I asked whether there had been an injury or infection. The answer was no. Then I looked at the X-ray that Dr. C had ordered which showed irregular and uncontrolled bone growth in his distal femur, the part of the thigh bone just above the knee joint. It was clearly cancer. I went back to the bedside and examined him again, this time feeling for and finding enlarged, rock-hard lymph nodes in his groin area, a sure sign of metastatic disease. Again through Dr. C, I asked whether this had really only been going on for a month or had been there longer. It had been longer.
In a man this young, the most likely diagnosis is Ewing’s sarcoma and the second most likely is osteosarcoma. Once either of those tumors has spread beyond the original site, a patient is unlikely to be cured with any treatment. Patients with metastatic Ewing’s sarcoma in the USA are treated with a combination of chemotherapy, radiation therapy and surgery but still have only about a 15% chance of living another five years. Chemotherapy and radiation therapy aren’t available in the DRC and surgery has nothing to offer this man because of the spread of his tumor. If I amputate his leg and remove as much tumor as I can from his groin, he will have the difficulty of recovery and still die from this illness just as quickly, if not sooner.
In the US, I am sometimes involved with a patient where I am the one who has to deliver devastating news of a bad prognosis or even that there is no medical treatment that will help their situation. But in cases like this at home, I can offer up glimmers of hope, the possibility that a biopsy might show that I’m wrong about it being cancer or that an oncology consultant might know of a new treatment. I always say “We might not be able to cure this problem, but we can help you” and when I am on my home turf, it is the truth. There are disease and age specific support groups, multiple social services workers in each hospital unit, pain specialists and hospice and palliative care services into which I can plug my patients.
In eastern DRC, there are no oncologists to send him to with the hope of a different diagnosis or a new cutting edge treatment. The hospital here has only one psychologist for the entire facility and palliative care services for the control of pain. There are no other specific social services or medical programs here for him. I feel like I have nothing to offer him; I don’t even possess the language skills in French, let alone in Swahili, or have a good enough understanding of his culture to have a respectful nuanced discussion about quality of life and end of life issues with him. The best I can do is to pass on my knowledge of the diagnosis and prognosis to Dr. C and tell him there is nothing I can do…Rien de faire.
If he were in the US, his chances for cure would be small but finite. Most likely he would have sought care earlier, maybe before the tumor had spread beyond the femur when the chance for cure was even higher. It is certainly unfair though I can understand and accept the situation on an intellectual level as being part of the general unfairness of life. In some ways it is no different than the disparity between educational or economic opportunities for people living in different countries, even not that different than the unfairness of the increased risk of dying from gun violence in the US if you are a teenager living in urban Chicago versus one living in an affluent western suburb. The part of his situation that I have a hard time accepting is that it is my job to help people and this time, I didn’t do my job.