No Big Deal?When Cathy Jenkins’ doctor called to tell her that the sore on her neck was melanoma, her first thought was, "Thank God, it’s only skin cancer." Like many people, Jenkins, 49, assumed that melanoma was no big deal, a nuisance her dermatologist could remove with a quick flick of the scalpel. In fact, she waited six months to see her doctor after she noticed the mole, chalking it up to irritation caused by a heavy new necklace she’d been wearing. Even after the diagnosis, taking care of the problem didn’t seem like a life-or-death situation. But when Jenkins tried to give it the brush-off, the doctor told her, "This is very, very serious. You need to come in now." It was only then she realized what a battle she was facing.Jenkins, who has survived for eight years, isn’t the only one who underestimates melanoma, a cancer of the pigment-producing cells in the skin. The least common of all skin cancers — basal-cell and squamous-cell types are diagnosed far more frequently — it’s often lumped together with those rarely fatal varieties. But there’s a big difference: Although it is 99 percent curable if caught at the earliest stage, once it has spread deep into the body, melanoma is very hard to treat. "In medical school, they told us you never wanted your patients to get melanoma, because they die," says Casey Culbertson, MD, chair of the Melanoma Research Foundation. While not everyone with melanoma faces such a dire prognosis — as Culbertson, a seven-year survivor himself, can attest — the statistics aren’t great. The American Cancer Society estimates that of 59,580 melanoma cases diagnosed this year, the disease will kill nearly 7,800 people. Incidence of the disease is rising faster than that of any other cancer — both in the U.S. and worldwide — and it’s one of the fastest-moving. According to Howard L. Kaufman, MD, author of The Melanoma Book, "Melanoma can double in a matter of a few weeks." The deeper the lesion, the greater the chance that it has metastasized.Part of the reason so many of us think that melanoma is no big deal is because we believe that avoiding it is simply a matter of wearing sunscreen and avoiding excessive sun exposure. Certainly, Cathy Jenkins thought she was safe. She was never a sun worshiper, had no family history of the disease and had few moles. Plus, she has dark hair and eyes, not the fair skin, freckles, and light eyes that can put you at risk for the disease. But sunlight is not the whole story. Even if everyone eliminated their sun exposure, we still wouldn’t be rid of melanoma. "Melanomas occasionally develop on parts of the body, such as the feet or buttocks, not commonly exposed to sun," says Kaufman. "We think that other factors must play a role." That’s another reason to alert your doctor if you see or feel a suspicious lesion in a spot found where the sun doesn’t shine. UV light is clearly an important component, but it’s not the only one. About 10 percent of melanomas are thought to have genetic links, but as scientists learn more about the disease they may uncover other factors, says Kaufman.At the time of her diagnosis, Jenkins’ melanoma was in an early stage, but had penetrated many layers of her skin, and one doctor suggested she may only have five years to live. (Melanoma is generally broken into stages 0 through IV, depending on how deeply the cancer has infiltrated the skin and how widely it has spread through the body.) "If you’re diagnosed with melanoma, your treatment options are limited," says Hester Hill Schnipper, chief, oncology social work at Beth Israel Deaconess Medical Center in Boston. "Chemo and radiation aren’t known to work on melanoma, so you’re basically left with two drugs, interferon and interleukin-2." After surgery to remove the lesion, Jenkins began a 12-month regimen of the drug interferon alpha. This treatment is based on a substance produced by the body to fight viral infections; in patients with melanoma, it stimulates the body to attack the cancerous pigment cells. For her melanoma, it offered a possible 10 to 15 percent better chance of survival — a rather meager hope. (For melanoma at other stages, interferon also may help, but studies have not yet proven that it’s effective across the board.) The year of treatment was grueling. Interferon’s side effects range from exhaustion and flu-like symptoms to depression. For Jenkins, the fatigue was overwhelming: "Walking up the stairs or putting detergent powder in the dishwasher would take all my energy." And once her treatment was over, she found herself obsessing over the future, fixating on her doctor’s suggestion that she could be dead in three to five years. "I made it through that third year and thought I had two more to go," she says. "I felt doom every morning when I woke up. I thought, ‘Today’s the day.’" When she reached the five-year mark, her boyfriend took her on a vacation to celebrate. Now that she has almost reached the eight-year mark, is she cured? Not necessarily. Melanoma is notorious for paying its victims a second visit, so Jenkins’ happiness is tempered with fear. "It can return, at any time and in any place," says Michael Gold, MD, a dermatologist in Nashville and Skin Cancer Foundation spokesperson. "There’s almost nowhere in the body I haven’t seen it come back to.""About five months ago I was really dizzy," says Jenkins. She feared the worst and immediately made an appointment with her doctor. "As they performed a CAT scan, all I thought was ‘Oh, my God, it’s in my brain!’ Luckily, it was an inner-ear problem." She still meticulously checks her skin for bumps and moles every day in the shower, fearful that she’ll find something. The superficial checking is smart, to a point: While melanoma can recur on the skin, typically, when it returns, it’s in the lungs, liver, bones, or brain. "Once you’re diagnosed [with a deep melanoma], you’re basically a patient for life," says Culbertson. "There are regular blood tests, plus they scan you everywhere, CAT scans, PET scans, MRIs." No Spot to SpotMelanoma doesn’t always announce itself with an obviously bad mole. When Lana Ricketts went to her gynecologist in October 1997 with an egg-sized lump under her armpit, she feared it was breast cancer. Her doctor said it was probably just a fatty deposit that she could have removed. It was a busy time: Her daughter had just started college in another city and Ricketts had planned a trip to visit, so she scheduled the surgery for three weeks later. Ricketts’ lump turned out to be a stage III melanoma that had spread to her lymph nodes. Ricketts, who was 45 at the time, was shocked by her prognosis: "I had a 33 percent chance of living five years."It is not uncommon that the original lesion is never found. In Ricketts’ case, it is possible that a "benign" mole she had removed years before contained a few melanoma cells which were missed in the biopsy, says Culbertson. Surgery removed all apparent signs of Ricketts’ melanoma, and to cut the risk that the cancer would recur, her doctors recommended injections of interferon alpha. But the drug’s rather slim effectiveness rate and the side effects dismayed her nearly as much as the disease itself. Instead, she enrolled in a melanoma vaccine trial at the National Institutes of Health. With support from her husband, her daughter, and a fellow melanoma patient, she made 18 trips from Illinois to Maryland for shots and follow-up visits. It was a gamble that may have worked; seven years after she felt the lump under her arm, Ricketts’ melanoma has not returned. But not everyone in her vaccine trial was as lucky. Of the 38 original participants, 34 have died, so it’s unclear whether it’s the surgery, the vaccine trial, or pure chance that accounts for Ricketts’ survival. New Moles Even if you’ve never had a skin scare, you can never be too vigilant about alerting your doctor to any changes in your skin, no matter how neurotic it makes you feel to report what may seem like a small matter. Three years ago, Patty Suessen did just that. Then 42, Suessen had gone to the dermatologist because she’d suddenly noticed a new mole on her right shoulder. While the mole didn’t fit most of the signs she’d heard about, it had appeared out of nowhere, so she decided to have it checked out. Suessen’s instinct was right. Tests revealed that she had stage II melanoma — the lesion was thickened and the cancer had spread to the lymph glands. Within the next few weeks, Suessen had surgeries to remove both the melanoma tumor and the adjoining lymph nodes."There is no proven way to prevent melanoma, so early detection is key," says Kaufman. In fact, despite continually rising incidence rates of melanoma, survival rates are also increasing. "It’s not the treatments that are improving," says Marianne Berwick, PhD, head of epidemiology and cancer prevention at the University of New Mexico in Albuquerque, "but it’s the fact that we’re catching the disease earlier."After surgery, Suessen’s doctor recommended a year of interferon alpha injections. Her fast-paced job as a software trainer took a beating; the interferon made her feel constantly foggy and hampered her ability to think quickly on her feet. And that was on top of the other side effects: severe fatigue, nausea and vomiting, weight loss, and thinning hair.While her employer was understanding during Suessen’s treatment, she endured the experience largely on her own. She lives alone, and at the time of her diagnosis, she was helping to care for her elderly parents. She shielded them from the worst of her condition. Suessen also discovered that some of her friends just did not understand what she was going through. "People are like, ‘Oh, yeah, I had skin cancer, too. I had something removed right here,’" she says. Few of them realized that the disease was endangering her life, and she wasn’t comfortable confronting them with this fact. "Some people don’t realize how serious melanoma is. They think you can just lop it off and you’ll be fine," says Casey Culbertson. Melanoma patients often don’t receive the support and acknowledgment that women with, say, breast cancer receive. With vastly more patients to serve, there are dozens of well-funded organizations dedicated to breast-cancer advocacy, education, and research, says Culbertson, while there are only a few (not nearly as well-funded) groups with the same mission for melanoma patients and their families.The bottom line is that, despite constant health warnings and pervasive sun-safety campaigns, public awareness about the true dangers of malignant melanoma still hasn’t taken hold. What would it take? For better or worse, it seems as if every disease, no matter how rare, has a celebrity spokesperson or an attention-getting fund-raiser or a color-coded accessory attached to it. Until melanoma gets the same attention, it’s likely to continue to be underestimated and misunderstood. And that could be a deadly mistake. How to Spot ItFollow the ABCD rule for detecting skin cancer, which points to four signs that a skin lesion may be malignant:
- A: It is asymmetrical. Draw an imaginary line through the middle of the mole, either vertically or horizontally. Are the two halves nearly the same size and shape? If not, get it checked by your dermatologist.
- B: It has an irregular border. The edge or border of a melanoma is usually irregular. The border can be scalloped, ragged, notched, blurred, or poorly defined.
- C: Its color is mottled or changing. Benign moles can be any color, but each mole will be only one color. Melanomas usually vary in shades within the same mole — from tan to brown to black or even blue.
- D: It has a diameter larger than the size of a pencil eraser. Be on the lookout for moles that are different from the others, one that changes, grows, itches, or bleeds. One of the most important warning signs is actually a new or changing lesion, says Martin A. Weinstock, MD, chair of the American Cancer Society’s skin-cancer advisory group. Some experts even advocate adding an E, for evolving, to the ABCD rule.
If your mole "passes" any or all of these ABCDs, see a dermatologist, pronto. Don’t delay, because once a melanoma has grown to the size of a dime it has a 50 percent chance of having spread elsewhere, says Darrell Rigel, MD, clinical professor of dermatology at New York University. Don’t let your doctor brush off a suspicious spot. If in doubt, have it taken out and insist on a biopsy, advises Kaufman. "Melanoma often arises from other moles, so removing them can be a preventative measure."If you have more than 50 moles on your body, consider having a dermatologist make a detailed "mole map." These medical photos are used to detect whether there are changes to a mole during subsequent checkups. More on Melanoma On the Horizon: Melanoma VaccinesThe current push in research is for a vaccine to teach the immune system to recognize and destroy melanoma cells, something scientists have seen happen spontaneously in a small number of patients. Dozens of different vaccines are being studied, many in clinical trials around the country, but most researchers don’t expect anything to be available to the public for at least five years. Current melanoma patients, however, can take part in the research and may be eligible for one or more trials, based on age, gender, melanoma stage, and other health factors. Ask your doctor about clinical vaccine trials, or go to www.clinicaltrials.gov for more information on trials in conjunction with the National Institutes of Health.Melanoma and Sun It would seem that avoiding melanoma means staying out of the sun at all costs, but a recent report, published in the Journal of the National Cancer Institute earlier this year, found that people who spent a great deal of time in the sun before their diagnosis with melanoma actually had better survival rates than those who spent less time in the sun. "Our study does not imply that people should not be concerned about excess sun exposure, but indeed a small amount of sun exposure should be okay," says study author Marianne Berwick, PhD, head of epidemiology and cancer prevention at the University of New Mexico in Albuquerque. "The take-away message from our study is that the sun is not the only cause of melanoma. While sun safety is very important, there’s no need to be totally neurotic about it." No one is sure yet what constitutes a safe dose of sun, but a sunburn is a sure sign you’ve crossed the line. What’s also important, Berwick notes, is simple skin awareness. In her research, people who regularly noted changes in their skin’s color, texture, and markings cut their risk of getting melanoma, and dying from it, in half.Originally published in MORE magazine, July 2005.