August 2005

Merkel Cell Carcinoma — A Rare Bug

by John P. Payseno

In my 63 years I never was sick. To be clear, let’s define “sick” to mean something more serious than a cold or the flu. Really sick. I had the normal childhood diseases and a couple of broken bones, but nothing life threatening.

Last year, I noticed an angry-looking growth on my left forearm. I thought it was a cyst or boil. It was persistent and did not go away. Around Thanksgiving, my wife, an RN, sent me to the dermatologist who excised the object and sent it to the lab. I thought nothing more about it.

About a week later, I received a phone call from my dermatologist — it was evening, about 6:30. She told me that the lab sample was cancerous; that in fact it was a rare and aggressive cancer called Merkel cell carcinoma; that I needed to see an oncologist as soon as possible; that the treatment required complete excision of the tumor, likely followed by aggressive radiation therapy and chemotherapy.

I don’t really remember much else in the conversation. I was in a daze and still did not fully appreciate that she had just told me that my health and life were in immediate danger. Luckily, my wife had just arrived home as the dermatologist call came in. She listened and interpreted for me.

Cancer is a word that still sends fear through to the core of one’s being. A stigma attaches to the word cancer. Most of us know of someone who has died of some form of this dreadful disease.

My wife made a list of the oncologists she knew of and who we thought would be the best to treat me. We chose Saul Rivkin at the Swedish Cancer Institute. His office made room in his schedule for us the next evening for a 7:00 appointment. Saul Rivkin is nearly 70 years old, with the energy level of a 30-year old. He often makes rounds to see his hospitalized patients in the middle of the night. He likes to be called Saul. He has a quick mind and is well-trained and experienced. He exudes the spark of life and knowledge in his manner, eye contact, and appearance. He instills confidence and patient trust. He is also honest. He has treated and lost many patients to cancer. He has also cured many. He has seen Merkel cell only two or three times.

He told me my odds were three out of four that, once removed, the Merkel cell disease would not return. In cancer terms, those are pretty good odds. Of course, the kernel of doubt is always in the back of my mind. Once in a while it comes forward, and I have found I need to “think” it to the back of my mind again and proceed with life. Living with a diagnosis of cancer is never easy.

He told me Merkel cell tumors are rare, occurring in only 300 to 400 cases per year in the United States. He told me it was a “troublesome and aggressive” disease. There are no “protocols” to treat it, like there would be for something more common, such as prostate cancer. Surgery and other treatments would be required for sure. He was not yet certain what the “other treatments” would be.

He told me we would have to schedule surgery. He then proceeded to do so, right then and there, juggling his cell phone and dictation phone in both hands. He called the surgeon, Jim Hanson, who returned Saul’s call within minutes. I was set up to see the surgeon almost immediately, and arrangements were made for me to have further procedures to determine whether the tumor had spread.

The most common cancer-spreading route is via the lymph system. A left-forearm tumor would likely spread via the lymph nodes in the left elbow, axilla (armpit), and chest. The surgeon removed the tumor from my left forearm, cutting away tissue until the pathologist determined that he had clean margins all around the tumor site (no remaining evidence of cancerous tissue). He also removed four axillary lymph nodes and found that two of them had cancer evidence.

This discovery required another surgery, performed about three weeks later, to remove another 25 lymph nodes from the left armpit. All 25 of these nodes were clean, to my great relief. God is good.

It was amazing how the diagnosis of cancer immediately took over my life. I realized that I was not immortal; that my health was the most valuable thing I had; that it was now in jeopardy. How would my wife and family react? What did the future hold? Would the tumor return in some other part of my body? Is this the disease that will end my life?

One of the most important factors to retain is a positive attitude and outlook. I tried always to listen carefully to explanations of proposed procedures and treatments. I visualized them as being tolerable and helpful. I prayed for myself, my family, my friends.

Many of us speak of our health as being important. Yet we continue in our ways, probably not fully appreciating what we mean by “our health.” Indeed, without good or decent health, not much else in life has quality. The life of the ill is not a pleasant one. My many visits to the “cancer wards” made me realize that there is another subculture that the mainstream of life really does not know exists. It is the cancer treatment centers.

Swedish Cancer Institute is a wonderful place to go if you have cancer. The nurses and technicians are very warm and caring. They know the anxieties and discomforts and real pain their patients are enduring. They smile; they are responsive; they touch gently and reassuringly.

My medical oncologist, the quarterback on my care team, told me the research on Merkel cell disease is limited, because it is rare. Merkel cell is also aggressive and troublesome. He advised me that we would have to undergo “big time” chemotherapy and radiation therapy, all in an effort to ensure that the disease would not return. I really had no idea what this “big time” treatment would entail. All I knew was that chemo patients were often severely nauseated. I was scared, to say the least, but I was also determined and knew I had no alternatives.

I learned I would need another surgery to implant a portable catheter into my right chest. Through this catheter I would be able to receive the chemotherapy infusions directly into my heart and bloodstream without having to use veins in my arms, which might fail or become damaged with overuse. The catheter is also a means to draw blood for the many and frequent diagnostic tests I would need. It is a great invention and saves a lot of discomfort.

The catheter implant surgery went well and, a few days later, I began the chemotherapy and radiation therapy. The two therapies were administered over a 10-week cycle. Chemotherapy treatments were on Wednesday, Thursday, and Friday of weeks one, four, seven, and 10. Radiation involved my left arm, shoulder, and chest areas. Each procedure took 20 to 30 minutes over 28 consecutive days (five days a week). The treatments were pain-free and not uncomfortable, other than the anxiety of the unknown. The radiation effects were cumulative. As each daily visit went by, my skin began to show evidence of burns, some fairly severe, especially in the sensitive armpit area. A variety of lotions, gel pacs, and, later, pain pills, kept the burn pain bearable, but no fun.

The chemotherapy treatments involved simply sitting back in a nice leather reclining armchair and having the very skillful nurses attach the IV tubing to my portable chest catheter and, bingo, the process started. No pain or discomfort. It took about three to four hours for the fluids to be administered. I was able to read, sleep, watch TV, or chat with my wife, who always was by my side for chemo. I had 12 chemo treatments spread over 10 weeks.

My wife formed a number of my friends and my son into a carpool to shuttle me each day to my radiation treatments and back home after each treatment. What a wonderful gift this was. One of them picked me up every day. Having a friend close by eased the anxiety of the treatments. The radiation treatments brought a lot of tiredness and exhaustion. Again, this was cumulative. The chemotherapy made me feel sick, like the flu, and somewhat nauseated. This lasted for five to seven days after each treatment. The nausea was well-controlled with medications. I learned more about Emend, Zofran, and Lorazepam than I really wanted. Most importantly, they kept me from vomiting. Thank God for these drugs.

Finally, all the treatments were completed and the 10-week cycle was over. The whole process took six months from diagnosis to treatment completion. My attorney friends helped me with many of my cases, since some of the drugs affect short-term memory. It would not do to chat with a client and forget what was said. Some days I needed help when I was just too sick to really work effectively

I continue to see my medical oncologist for monitoring. He checks my blood diagnostics by use of my portable catheter. He tells me I am cancer free. I can hardly believe it, but I am immensely grateful and relieved. I know my odds, and I know the disease can return. In the meantime, I plan to live life to its fullest. I will now appreciate my health as I never have before.

None of us is going to live forever. We all live life in a bubble, in a sense. The bubble can burst. But it probably will not. In the meantime, do things for the right reasons. Don’t put off meaningful activities, cultivate essential relationships, accomplish worthwhile projects. Value and protect your health. You will never regret doing so.

John Payseno practices in Seattle and reports he is feeling fine.