The Break Room
BACK of the BOOK
A look at the social side of medicine . In this edition , Jose A . Bufill , MD , shares the story of a patient who was helped by coincidence , serendipity , and hematologists around the world making an effort to talk to each other .
Hank ’ s SMILE By Jose A . Bufill , MD
tuffy nose . Everybody gets a stuffy nose once in a while . When the stuff didn ’ t clear with antibiotics and decongestants , his family doctor referred Enrique to an ear , nose , and throat guy for evaluation of bad sinusitis . He didn ’ t need any expensive tests to figure out what was going on : a little white nubbin about the size of a pencil eraser right on the roof of Enrique ’ s palate . It took a week to book the biopsy . When the doctor went back in to take the thing off , the nubbin had grown ... a lot . It looked like a crater . And Enrique was talking as if someone was pinching his nose . It took longer than usual for the final diagnosis to come back : “ extranodal NK / T- cell non-Hodgkin lymphoma , nasal type .” A mouthful even for a native English speaker .
Enrique was from El Salvador and , though he knew some English , he preferred to speak in Spanish . He had lived in the United States for about 10 years , and his coworkers at the factory called him Hank . He was a welder . He and his buddies made axles for RVs and mobile homes in Elkhart , Indiana . His wife and four young children came over from El Salvador once he got a steady job , and they were all with him the day I met him for the first time . His doctors saved time by arranging for CT scans to be completed before our initial consultation . Those scans showed a mass partially filling his maxillary sinus and eroding through his palate . Fortunately , there seemed to be no lymphoma elsewhere . By the time I got to meet him , he had received a couple of doses of radiation to his face .
My first impression ? Hank looked really sick . His voice was muffled . His face and eyes seemed puffy . All his bones ached . Sweats and low-grade fevers had begun . I called his radiation oncologist and learned that he had been completely well the week before . His blood work results confirmed our concerns : The calcium level was way up , his kidneys were shutting down , and worse , those test results had recently been normal . He believed me when I wrote “ linfoma – muy malo ” on our official stationery . A PET scan now showed his lymphoma was everywhere : bones , lymph nodes , liver , and spleen . Again , none of this had been apparent on the CT scans done days before . Hank was in big trouble . His cancer was exploding .
I arranged for him to be hospitalized immediately to try to reverse the kidney failure and lower his toxic calcium levels . It was clear that radiation alone would be inadequate and chemotherapy would be needed right away . But which chemotherapy should we use ? He was falling apart under our noses . Extranodal NK / T-cell non-Hodgkin lymphoma , nasal type , is an exceptionally rare tumor everywhere except among East Asians and certain native populations of Central and South America . Even among those groups , it accounts for no more than 6 percent of all lymphomas . None of my colleagues recalled having treated a case and – as is the case for many rare cancers – no well-validated treatment exists . Patients with advanced disease can die in a matter of months .
Happily for me , a colleague in the bone marrow transplantation section at the University of Chicago had just returned from Hong Kong , a part of the world where Hank ’ s disease is most prevalent . After reviewing Hank ’ s case with him , he recalled a conversation he had a few days before with a Chinese colleague who told him about a new chemotherapy program he and his colleagues had
“ Hank received his cancer care in a scrappy , small-town hospital in northern Indiana . And , if you ask Hank and his family , we also have the best medical care in the world right here .”
— JOSE A . BUFILL , MD
developed with promising results in this tumor . Their research had just been accepted for publication , and the Chinese doctors decided on a perfect acronym : their treatment would be called “ SMILE ” – one letter for each of the five drugs used . With 24 hours of IV fluids under his belt , Hank was feeling better and his numbers were improving . He was ready to start chemo .
I can ’ t say that Hank ’ s SMILE was a walk in the park . A rollercoaster ride would be more accurate . He had many complications : severe nose bleeds , a trip or two to the intensive care unit with sepsis , a brief brush with dialysis , and many anxiety-ridden weeks . But today , Hank
is back , working full-time and in complete remission from his lymphoma . While he was sick , his axle-manufacturing company went out of business . After a few years on disability , he re-entered the job market and – remarkably – found a job making axles for a competing firm . He still struggles with the English language , but he loves his new country . Hank , his wife , and their children are now U . S . citizens , and from time to time , his wife brings in great “ pupusas ” for the nurses and office staff .
Hank received his cancer care in a scrappy , small-town hospital in northern Indiana . Around here , Amish buggies compete with soccer moms in mini-vans on country roads . Our factories make car parts , mobile homes and RVs , hand-made furniture , and even the world ’ s finest sliding door hardware ( a system designed from scratch by one of my patients who died not long ago at age 94 , the patriarch of a wonderful family and founder of a multimillion-dollar business ). And , if you ask Hank and his family , we also have the best medical care in the world right here .
What made the system work for him was that people made an effort to talk to each other . Think about it : A European-born academic transplant doctor working in Chicago travels to China for a medical meeting . He hears in passing about a new treatment for the rarest of lymphomas . He returns home to a pile of messages and answers the one from a friend and colleague in private practice . Within a few hours , Hank ’ s U . S . team confers with colleagues in Hong Kong to help him – an El Salvadoran immigrant in dire straits – get state-of-the-art treatment , months before research results would be made public . His chemo orders were written using the galley proofs from the Chinese paper . Coincidence ? Serendipity ? Perhaps . What is certain is that Hank ’ s SMILE has become – for all of us – a heartfelt laugh . ●
* Note : The patient ’ s name and country of origin have been changed .
Jose A . Bufill , MD , is director of the Cancer Genetics Program at Saint Joseph Regional Medical Center in Mishawaka , Indiana , and a partner at Michiana Hematology-Oncology , PC , in South Bend , Indiana .
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