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Blog 7: Staging My Disease

Posted by LeslieDavidSimon in The LLS Blog, 29 January 2015 · 34 views

By Leslie David Simon

This continuing first-hand account of Leslie David Simon's experience as a lymphoma patient will run throughout the next few months. Please check here frequently for new installments.

On May 22, I met with Dr. Bruce Cheson. Dr. Cheson is one of the nation’s leading physicians in dealing with blood cancers—leukemia and lymphoma. He is professor of medicine, hematology and pathology at Georgetown University Medical School, head of hematology and hematology research at the Lombardi Cancer Center. He has also been head of medicine for the National Cancer Institute’s Clinical Investigations Board and has served as chair of the Science Advisory Board for the Lymphoma Research Foundation.

The Lombardi Cancer Center occupies a corner of Georgetown University Hospital. As a teaching hospital, patients interact not only with their physician, but also with fellows, residents, nurses, technicians, and medical students. I found this experience pleasant and informative, as I got to discuss the details of my disease with them, as well as with Dr. Cheson.

My first appointment at Lombardi began with a simple blood test or CBC—Complete Blood Count. The results were ready for my meeting with Dr. Cheson. After my vital signs were taken and some data collected by a nurse, there was a knock on the examining room door and a young woman entered. She introduced herself as Dr. Khan and said she was a fellow at the center working under Dr. Cheson. She asked about my symptoms, completed her physical examination and said she’d be back with Dr. Cheson shortly. Dr. Cheson arrived later, and also examined me, paying close attention to the size of my lymph nodes and spleen, as well as to my vital signs. After more questions, we began to discuss my case.

With an ambiguous diagnosis, he said, I would likely need laparoscopic abdominal surgery to remove an entire lymph node to get sufficient tissue. While this ought to wait until after my appointment at Johns Hopkins with Dr. Ambinder, who he knew and respected, there were things we could do in the meantime. First, I should go to see a surgeon about the operation. He asked the nurse to make an appointment for me with Dr. Patrick Jackson, chief of abdominal surgery at Georgetown and a specialist in laparoscopy.

Second, he said, I would need a bone marrow biopsy. I said I was ready to do so as soon as possible and he turned to Dr. Khan and asked if she could do it later in the afternoon. She said she could and we set the time for 5:00 pm.

Finally, we discussed the results of my PET scan. The scan confirmed the results of the earlier CT scan and added some new information: “Bulky adenopathy is noted in the abdomen and pelvis….The retroperitoneal adenopathy…. Has intense hypermetabolic activity. There is a conglomerate of mesenteric and abdominal lymph nodes with increased FDG uptake….. Above the diaphragm is a hypermetabolic left supraclavicular lymph node which is not obviously enlarged but nevertheless suspicious for disease involvement. No other foci of abnormal FDG uptake noted elsewhere in the body.

In other words, the PET scan confirmed that I had lymphoma in the abdomen and pelvis. In addition, the report mentioned a hypermetabolic lymph node above the diaphragm “which is not obviously enlarged but nevertheless suspicious for disease involvement.” In other words, the disease could have begun spreading beyond my abdomen to my diaphragm. My spleen was somewhat enlarged but most likely due to my polycythemia, not to lymphoma.

When I asked Dr. Cheson about staging my disease, he said we’d wait for the bone marrow biopsy, which would tell us if the lymphoma has spread there yet. Thus, I would have to wait for another few weeks to learn both the specific type of lymphoma that I had as well as the stage, or how advanced the disease was.

Attached Image
With granddaughters Rachel and Rebecca

Simon is a retired senior executive at IBM in Washington DC, New York and Paris, where he oversaw government affairs and communications. He also served as a scholar at the Woodrow Wilson International Center for Scholars in Washington DC and wrote two books about the Internet, public policy and democracy.

Read Leslie David Simon's full blog, as chapters are posted, by clicking here.

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