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Tom’s personal story

Tom Koutsoumpas
It all began in the middle of my back, near the spine, where I probably would never have noticed it—except for the fact that it itched. And itched. It itched so much that my wife decided to investigate. And there it was: the tiniest mole, no bigger than a pinhead.

As a professional health care advocate, I was not completely unaware of skin cancer. And yet that mole looked so harmless, so small. It was not particularly dark or ugly. It had no funny edges, none of the traditional signs that I imagined would signify a serious problem. But the itching progressed, until the constant struggle to scratch my back became impossible to ignore. My wife prevailed upon me to see a dermatologist.

There was no history of cancer in my family, and given the size of the mole, it seemed unlikely to be serious. Still, the dermatologist carefully removed it and sent it to the lab for biopsy. Ten days later, I was driving to work when my cell phone rang. The tissue had tested positive for melanoma. We talked for a few minutes. Then it began to sink in, and I literally pulled over.

Cancer! There are times in your life when everything goes from normal to Oh my gosh! In my youth, I had never considered the negative consequences of sun exposure. Quite the contrary, I had sought out the sun. Growing up in Annapolis, Maryland, we used to go sailing on weekends. I had many happy memories of sailing shirtless through the wind and spray, the warm sun on my bare skin. And now I had skin cancer. It was strange to think of a deadly illness inside of me, while I felt so strong and healthy.

Working in the health care industry, I am lucky enough to know many doctors. When I got into the office, I called a few who are close friends. They advised me to take my diagnosis seriously. Though often treatable, they admonished, melanoma could be a serious and aggressive illness, and I should plan to meet it with an equally aggressive response.

Taking their words to heart, I contacted the MeIanoma Program at Johns Hopkins. In a few days, I had an appointment, and they began the process of looking at my case. Initially, the mole had appeared so small that it seemed natural to assume that we had gotten all the cancer. But the dermatologists at Hopkins insisted that we test the margins and biopsy the lymph nodes to see if it had spread. Astonishingly, one node tested positive for cancer cells, haunting evidence that what presented as a tiny spot had spread to other parts of the body. To be safe, they surgically removed the lymph nodes from under my arm.

After surgery, my options were limited. Given the relatively small scope of the illness, traditional chemotherapy, with its often drastic side effects, was not recommended. Treatment with the drug interferon was a possibility, though not without its own side effects. We could also take a wait-and-see approach, monitoring the illness to see if it would recur after the surgery. But as difficult as it was to think about treatment, it was even harder to contemplate doing nothing.

In the end, I was able to enroll in a clinical trial at the National Institutes of Health and the National Cancer Center. There, Dr. Steven Rosenberg and others are doing amazing work in immunotherapy, stimulating the body’s own immune system to fight cancer cells. Having completed the trial, I am still on an extremely aggressive monitoring program at Johns Hopkins. But I have had no signs of any recurrence, and if it does recur we can get on it quickly.

So much trouble over one tiny mole, no bigger than a pinhead. Whenever you face the potential of a life-threatening disease, you look at everything differently. You see a renewed importance in the simple pleasures of everyday life. You take extra comfort in your loved ones. You learn to pay special attention to your health and the health of those around you.

My melanoma diagnosis and treatment taught me a number of important things that I am eager to share with others. First, I would like to encourage others to think about carefully early screening and early detection. Melanoma is one of the fastest growing cancers, but it is also one of the most treatable. They key is early detection.

Second, avail yourself of dermatologists. I believe with great passion that dermatologists are lifesavers in the arena of melanoma. They are first responders and your front line against this deadly disease. They have skills to identify the signs that your regular physician does not. Before my diagnosis, I had no regular contact with a dermatologist. Since then, I have made sure that I and my family see one regularly.

Finally, I would encourage you to be aggressive, even if something only looks a little suspicious. My cancer diagnosis started with the tiniest of moles. It is frightening to think of what could have happened, if my itching had not prevented me from ignoring the signs.