Memo From the Editor's Guest

Thank you, Doctor, for what you didn't tell me

By Doreen Mangan

The dermatologist read through my medical history, scanned the old pathologyreports, looked up at me, and said, "I honestly don't know why you'restill here."

I stared at him.

"Very few people survive metastatic melanoma," he went on."You're one of the few."

No. This can't be, I thought. What is he saying? For distraction, I lookedout the window of his office on the 78th floor of one of New York City'stallest buildings. I remember thinking that the last time I was this highup, I was on a plane. Why couldn't I be on one now--or anywhere, away fromthis office?

His voice interrupted my thoughts. "You had a 30 percent chanceof survival." My last surgery had been in 1986. This was July 1999.I'd beaten odds I'd never known I was up against.

Many years earlier, I wasn't too worried when I asked a doctor aboutthe ugly mole on my right forearm that sometimes bled. I was young, andnaive about illness. I knew about skin cancer, but wasn't it basically harmlessand easily treatable? I'd never heard of melanoma.

"That's not a mole," the doctor had said. "You need tosee a surgeon." I felt a tinge of alarm when he called a surgeon rightthen and made the appointment.

A biopsy revealed malignant melanoma. The tumor was deep and requiredfour hours of surgery. The surgeon also explored lymph glands under my rightarm. A kind, fatherly man, he reassured me I'd be all right.

Several days afterward, the surgeon strode into my hospital room, allsmiles. The lymph glands were clean! I was fine, and could go home. As faras I was concerned, the whole nasty business was over.

A few weeks later, out of curiosity, I browsed through the health sectionof a bookstore. A statistic in one book jumped out at me: "Six thousandpeople a year die from melanoma."

Die? My heart beating fast, I closed the book quickly and walkedaway, shocked. The surgeon hadn't mentioned that. And he'd said I'd be fine.That was all I needed to know. Denial? Of course. As a reporter, I knewhow to ask hard questions; I just hadn't asked any about my own condition.

Over the next few years, I had three recurrences. They were tiny tumorsjust under the skin, two on my right arm and one on my right side. To me,they were minor annoyances. Each time, the growth was removed in an outpatientprocedure by the same surgeon who'd treated me earlier. "You must havea strong immune system," he said. "A lot of my patients get manymore of these things than you've been getting." More reassurance--butagain, no questions from me. The surgeon did, however, put me on a regimenof BCG vaccine, which continued for several years.

I didn't know it then, but my chances for five-year survival had slippedfrom a promising 95 percent, after the first surgery, to a dismal 30 percentafter the first metastases. The surgeon had never mentioned those statistics.I didn't know how precarious my situation had been until I visited the dermatologyconsultant, about another matter, 13 years later.

Why hadn't my surgeon told me?

To find out, I visited him recently. "Well," he said, smiling,"I don't like to tell a patient she's going to die, because maybe shewon't." And, he said, only half in jest, "You might have donesomething like run off to Mexico for some off-the-wall treatment."Besides, he went on, there was nothing to be gained in telling me at thatpoint, because there wasn't much in the way of treatment for advanced melanoma.Even the BCG was unproven. However, I haven't had a recurrence since thosetreatments. (Nor have I had a cold since then!)

Should the surgeon have laid it all out for me? Should he have explainedmy survival chances and advised me to write a will, take a trip around theworld? Many doctors would say Yes.

My internist told me, "There are medical and legal reasons for fulldisclosure." She paused. "But he really did you a great service."

Did he ever!

After learning I had dodged a death sentence, I was in shock for a fewweeks; I kept reliving that conversation and could think of nothing else.An expert in such matters said I was suffering a form of post-traumaticstress syndrome. But that passed. And my focus gradually shifted from shockto gratitude.

I began to count my blessings. I was so lucky to be alive! Thanks tothe kindness of my surgeon, I had lived those years fully. I'd developedmy career and worked at jobs that I loved. I'd fallen in and out of lovea few times, traveled to Europe and the Far East, cross-country skied, becomea baseball fan, learned to share my mother's love of gardening, discoveredhow alike my brother and I are, and developed a wealth of friends who arenow like family. And I was able to be strong for my parents during theirfinal illnesses. An unremarkable life, perhaps. But mine--and, to me, remarkableand precious.

Could I have enjoyed those years, knowing that at any moment the diseasecould invade my liver, lungs, or brain? I tend to roll with life's punchesfairly well, but the 30 percent punch would, I'd bet, have been a knockout.In fact, I may have survived precisely because I didn't know I mightnot. Surely optimism and joy in life have a role in healing.

So when I visited the surgeon, I thanked him for keeping the dark newsto himself and for letting me live those years unfettered. He was pleasedwith that news. "You made my day," he said.

I've got news for him: He made my life!

The author is a Senior Editor of Medical Economics

. Memo from the Editor: Thank you, doctor, for what you didn't tell me.

Medical Economics

1999;22:8.