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My Cancer Nightmare:Why I Watch and Don’t Worry

Moles

A routine skin checkup turned into a nightmare when a dermatologist told me that I had precancerous lesions all over my body. But a little digging proved him dead wrong.

I went to Dr. A last August to remove a mole from my scalp that had become irritated from a barber’s comb. I was confident that it was benign because I had a similar mole removed without incident several years earlier, and a previous examination indicated that this one was also harmless. It was, and Dr. A excised the mole without incident.

But then he became horrified when he saw my back, which he said was “plastered” with “precancerous lesions” that he referred to as “dysplastic nevi.” He said, “These things will kill you.” Dr. A told me that I had about 50 of them, which he said would take a year for him to remove at the rate of one per week.

Having been in robust health for my entire life, I was shocked and dismayed by this diagnosis. And something seemed strange. If these moles were indeed lethal, wouldn’t it make more sense to remove as many as possible at once rather than draw out the process for an entire year? When I raised this issue with Dr. A, he replied that “I want to go slowly to make sure I don’t miss anything.”

I was still skeptical and continued to ask questions of Dr. A during my next two office visits. He removed a total of two dysplastic nevi over this period. During the third and last visit, when I asked Dr. A whether the excisions cause scarring, he replied, “Yes, but it’s better than being six feet under.”

I had wanted to ask many questions but was distracted by my paranoia, which Dr. A stoked by making numerous remarks about death. I was, therefore, unable to consult my written list and did not query in an organized fashion. Becoming impatient with me, Dr. A copped a boorish and loud tone, causing the physician assistants in the examining room to be visibly shaken. It was time to get additional medical opinions.

Before proceeding further, a little background is necessary.

According to the National Cancer Institute (NCI), whose website is located at www.cancer.gov, moles are growths on the skin. They are derived from melanocytes, cells that give the skin pigment or color. When exposed to the sun, melanocytes proliferate, causing tanning. The average person has between 10 and 40 moles. Most moles are harmless. They are typically tan, brown, pink or flesh-colored. Normal moles can range in size from a pinpoint to several millimeters in diameter. A mole usually has an oval or circular shape.

Moles can be flat or raised, and may grow over time. Normal moles usually stop appearing after age 40. Some may flatten, fade, or even disappear over time.

The NCI defines “dysplastic nevi” or atypical moles as follows: “Atypical moles; moles whose appearance is different from that of common moles. Dysplastic nevi are generally larger than ordinary moles and have irregular and indistinct borders. Their color frequently is not uniform and ranges from pink to dark brown; they usually are flat, but parts may be raised above the skin surface.”

According to a pamphlet produced by the American Academy of Dermatology, dysplastic nevi are benign growths that may display characteristics of melanoma, the most serious of the skin cancers. The characteristics, collectively referred to as “A-B-C-D-E”, are as follows:

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Asymmetry: The mole is not unifrom; one half has a different shape than the other.

Borders: Typical moles have a regular, well-defined border. Melanomatic and some dysplastic moles have ragged or fading edges.

Color: Typical moles are monochromatic; cancerous and some dysplastic ones are multi-colored.

Diameter: Typical moles are no more than 5-6 mm (about 1/4 inch) in diameter; melanomatic and some dysplastic moles are larger.

Elevation: Typical moles are usually flat; melanomatic and some dysplastic ones are elevated.

A mole with one or more of these characteristics does not mean that you have melanoma, but the more of these traits that you have, the greater your risk. If you observe any of these properties, tell your doctor.

Pictures of normal moles and dysplastic nevi can be found at http://www.cancer.gov/cancertopics/wyntk/moles-and-dysplastic-nevi/page8. Pictures of melanoma can be found at http://www.cancer.gov/cancertopics/wyntk/moles-and-dysplastic-nevi/page9.

According to the NCI, risk factors for melanoma include the following:

Personal or Family history of melanoma (close relatives)
Dysplastic nevi
Weakened immune system
Many ordinary moles (more than 50)
Excessive Ultraviolet (UV) radiation
Severe, blistering sunburns
Freckles
Fair skin

As suggested by the size of the above list, the causes of melanoma are complex. Although many risk factors have been identified, nobody really knows what causes melanoma. Researchers can’t even agree on the magnitude of the risk. For example, according to the Skin Cancer Foundation, a person with atypical moles and no family history of melanoma has a risk of developing the disease that is 7 to 27 times greater than that of the general public. That’s a wide range. According to the American Academy of Dermatology, the risk of the average American’s contracting skin cancer is relatively small, about 1 in 75. According to the NCI, “about half the people who develop melanoma do not have dysplastic nevi, and they may not have any other known risk factor for the disease. ”

In other words, you can have every mole removed from your body and still get melanoma. And if you’re like me, you’d have to be practically skinned alive in order to be mole-free. On the other hand, you could leave everything alone and be just fine.

Most moles, including dysplastic nevi, are benign. According to the NCI and the Skin Cancer Foundation (www.skincancer.org), dysplastic nevi that do not display characteristics associated with melanoma do not need to be removed. An article in the November 2003 Journal of the American Academy of Dermatology, “Dilemmas in Dysplastic Nevi,” by Drs. Clay J. Cockerell and Stuart Brown, questions whether the dysplastic nevus is even a separate clinical entity. Dr. Cockerell cites Dr. Bernie Ackerman, who notes that dysplastic nevi are “extraordinarily common” and usually benign. Dr. Cockerell advises patients with dysplastic nevi to see a dermatologist regularly and perform self-examinations. He says that suspicious moles should be removed and biopsied, or photographed using high-resolution or digital techniques, as warranted. The article can be found at http://www.aad.org/professionals/educationcme/AADCMEactivities/DialoguesDerm/DiDCommentNov2003.htm.

For my second opinion, I visited Dr. B, who teaches at the New York University School of Medicine , a mecca of dermatological research (http://www.med.nyu.edu/dermatology/). Dr. B seconded Dr. Ackerman’s view that most dysplastic nevi are benign. After a thorough body scan using a special magnifying visor, Dr. B said that all of my moles, dysplastic and otherwise, were regular in appearance with the exception of two, which were only slightly irregular. He excised the two moles and had them biopsied. After reviewing all the biopsy reports, including those from Dr. A’s office, Dr. B gave me a clean bill of health. All biopsies were negative. Dr. B recommended annual exams and standard protection from the sun. My nightmare was over.

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As a double-check, I went to Dr. C, who also teaches at NYU but works in a private practice which is independent of Dr. B’s. Dr. C performed an even more thorough body scan, using a visor and a special, hand-held florescent light. Dr. C. said that no more moles needed to be removed because those remaining were all benign. She agreed with Dr. B that all biopsies were negative, and recommended that I should use a good sunscreen and see a dermatologist regularly. Dr. C also recommended monthly self-exams in which you systematically view your birthday suit, including buttocks, scalp, soles, and areas between toes, using mirrors while looking for suspicious changes in existing moles, or the appearance of new moles. Pamphlets telling you exactly how to do this are published by the organizations named in this article. They can be obtained from your dermatologist.

By now my relief had turned to anger. Dr. A had instilled me with unnecessary fear. So I got another recommendation and went to Dermatologist D at Beth Israel Medical Center in order to be absolutely certain. Dr. D said that I was perfectly healthy, and his recommendations were nearly identical to those of Drs. B and C.

Dr. D explained that there are different kinds of dysplastic nevi. Two major categtories are architectural and cytologic. He said that the cytologic type are potentially dangerous, but mine were architectural and not a cause for concern.

So I stopped getting mad and got even. After obtaining letters from Drs. B, C, and D and doing some online research, I filed a complaint against Dr.A with my state Office of Medical Conduct. As of this writing, the complaint is still pending.

Between insurance reimbursements and co-pays, Dr. A had received about $200 per visit from me, an average fee. Had I continued treatment with him for a year, he would have gotten about 50 times $200 or $10,000.

Let’s be clear: if I simply had had a personality conflict with Dr. A, I would have just gone to another doctor. I had never complained about a physician before and did so now reluctantly. Besides, medical boards don’t hear compaints about rudeness.

If I had a rare condition and the doctor performed a couple of unnecessary procedures on me, I still might not have reported him. What really irked me was the fact that my benign condition was common and that Dr. A had a large practice. During my three visits, there were always about a dozen patients in his waiting area. Based on the size of his sign-in sheets and the number of people in his office, I estimated that he saw at least 60 patients a day. If he was ripping me off, he was probably ripping off a lot of other people and might have gotten hundreds of thousands of dollars for unnecessary surgeries.

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Unlike Drs. B,C, and D, Dr. A did not ask me for a detailed medical history. If he had, I would have told him that with the exception of a distant, fair-skinned relative, there is no history of skin cancer in my family; that I have never had skin cancer or any other serious illness; that I have always been in excellent health; that I experienced only a few, mild, localized sunburns during my life; and that I tanned easily as a child, but limited my sun exposure as an adult. All of these factors reduce my chances of melanoma.

Despite the emotional distress I suffered, some good things came out of this experience. I educated myself about a serious issue to which I had not paid much attention, and I learned not to blindly trust doctors. Dr. A came highly recommended to me by my insurance agent. About 20 years ago, he held a high position in the health department of a major city. He had a “Top Doctor” Award displayed on his wall. And he was still a jerk.

It is important to feel comfortable with your doctor. Not every physician has the personality of a Ben Casey or a Dr. Kildaire, but he or she should provide sound medical advice in a calm and civil manner. If a doctor becomes verbally abusive or defensive upon questioning, especially when you’ve been given a serious diagnosis, get another doctor. In fact, it’s a good idea to get multiple opinions whenever a doctor says you have a serious condition. It took two good friends, one of whom is an emergency room physician and instructor, to remind me of that important adage.

Although people with dysplastic nevi should not be paranoid, they shouldn’t be complacent either. Factors such as family history, personal history, and skin type are beyond your control. But a risk factor that you can do something about is excessive sun exposure, which is a major one. Note use of the word “excessive.” Modest sun exposure does not increase your risk and is probably good for you. Everyone needs fresh air, and Vitamin D is absorbed through the skin when it’s exposed to sunlight.

The NCI and the Skin Cancer Foundation recommend use of sunscreen, protective clothing, and limiting your time outdoors, especially during the summer months. According to the American Academy of Dermatology (www.aad.org) , everyone should avoid being outdoors between 10 a.m. and 4 p.m. and wear protective clothing, including wide-brimmed hats and sunglasses. The NCI recommends use of sunscreen with an SPF (skin protection factor) of at least 30.

And even if you do get skin cancer, if it’s caught early, the cure rate is nearly 100 percent. So enjoy the sun in moderation, protect yourself, watch, and don’t worry.

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