Cancer: An Unexpected Consequence

Jerry NiebaumBy Jerry Niebaum, Ph.D., September 2007

In early 2003 I was diagnosed with Wegener’s granulomatosis and have been in continuous treatment for the disease since that time. Treatment has included Cytoxan, Methotrexate, and Prednisone to suppress the immune system to treat the symptoms of Wegener’s. This article is to help alert other vasculitis patients to one potential side effect of the long term use of immune suppressive drugs.

It was a small bump on my arm that I first noticed in early Summer 2007. Being a redhead with freckles I’m very used to seeing funny things on my skin. I was concerned about an itchy spot on my left temple just above my glasses line, so I made a June 15 appointment with my primary care physician. He thought the face spot looked suspicious and advised its removal. He was considerably less certain about the bump on my arm, but advised that he could remove that as well. After removal, the facial spot was determined to be a squamous cell carcinoma. We left the arm bump for later.

My physician recommended further surgery on the facial spot by a plastic surgeon to help insure that all cancerous tissue had been removed. I delayed any action on the bump on the arm until the surgeon visit on July 13. In his examination and without my prompting he noticed the bump on my arm, which had grown to the size of a dime and exclaimed, “What’s that?” We both laughed about that as I remarked that “I had hoped you could tell me." We scheduled surgery on both face and arm for August 10.

My Merk 8/10/2007On August 20 he reviewed the pathology report with me. “Good news on the facial spot. No additional squamous cells were found.” However, the good news was short lived because the bump on my arm was a Merkel cell carcinoma, a rare and aggressive form of cancer. According to one report there are only about 1000 cases of MCC (Merkel cell carcinoma) in the U.S. each year versus about 60,000 cases of melanoma. According to Web site: http://www.merkelcell.org/  “The exact causes of MCC are not known. MCC is associated with a profoundly weakened immune system, such as in patients with HIV, or in patients who have received an organ transplant who are on medications that suppress the immune system. Factors strongly associated with the development of MCC are:

Age over 65 years  (I’m 67)
Fair skin (I’m a redhead with light complexion)
History of extensive sun exposure (worked outside on farms as a youth)
Chronic immune suppression (for me, more than 4 years)

Yes, I fit all four factors.

My physician noted that further tests and additional surgery would be required. He proceeded to visit with a team of physicians for collective advice on how to proceed. They advised that I have a positron emission tomography (P.E.T.) scan. The procedure involves an intravenous injection of a radioactive sugar substance, FDG (fluorodeoxyglucose). Because cancer cells absorb sugar more than normal cells, they show on the P.E.T. scan. The FDG is injected and the patient then waits approximately 1 hour for it to circulate throughout the body. For me the entire process on August 23 took slightly over 3 hours, including the scan time.

On August 24 I got the good news that the P.E.T. scan did not reveal cancer cells in other parts of my body. The surgical team determined that on August 28 they would perform three surgeries: a sentinel node biopsy of the lymph nodes under my right armpit, excision of the area around the spot where the Merkel cell tumor was removed, and a skin graft from my leg to cover the wound area of the excision on the arm. For the sentinel node biopsy they injected a radioactive dye in my arm and used a gamma ray scanner to trace its movement to the lymph nodes under my arm. The node which collects the most dye is considered the sentinel node for fluids draining from that area of the arm. The surgeon removed that lymph node and one adjacent for biopsy. The pathology was negative, so gratefully, no further lymph nodes were removed. The arm and leg surgery went well. Further pathology on the arm tissue showed no additional Merkel cell presence.

Ok, so what would I have done differently? I would have and will be more alert to unusual growths or skin changes and have them checked immediately. Our own intuition about our health can be an important diagnostic tool for health care workers. Having said that I should also note that there is only a very fine line between such intuition and hypochondria. Modern diagnostic tools coupled with surgical skills and treatment options have helped remove some of the dread of the “C” word.

[Jerry Niebaum is the contact person for the Kansas City Chapter of the Vasculitis Foundation.]