In our group, melanoma and symptomatic NCM donít occur very often, thank goodness for us! Our risk is higher than the general population, but still quite low overall. The risk of melanoma in the general population in 2003 ranges from a low of 0.13% (1 in 791) in males and 0.20% (1 in 512) in females for ages 0-39 to a high of 0.98% (1 in 102) in males and 0.51% (1 in 198) in females for ages 60 to 79. The lifetime risk of melanoma for the general population is 1.75% (1 in 57) for men and 1.23% (1in 81) for women. The lifetime risk of dying of melanoma is 0.36% for white mena and 0.21% for white women. All other races have lower risk. If you are going to bet on what might kill you, bet on heart and blood vessel disease, which kills about half the general population! So melanoma is a miniscule risk in comparison to dying of heart disease.

Jemal A, Murray T, Samuels A, Ghafoor A, Ward E, Thun M. Cancer Statistics, 2003, CA Cancer J Clin 2003;53:5-26.
USPSTF, Berg A. Counseling to prevent skin cancer: recommendations and rationale, Am Fam Physician 2004;69:903-904. Complete text of reference is at:

Even though the melanoma/symptomatic NCM risk is low, it still exists for those of us with giant nevi. At present the risk of melanoma is 2.9% for those with giant garment nevi in our group, with 0.8% dying of it. There is at present a 0% risk of melanoma for those with facial or extremity nevi, and 6.7% for those with only satellites without a giant nevus. We are still tallying the risk of NCM in our group, which is around 3% for those with a garment nevus with about half of those dying of it. So far this is still far less, for example, than the 6% lifetime risk of dying of colon cancer. And how many parents are worried about their kid getting colon cancer? None, we venture.

So what can we do to decrease our risk of melanoma/symptomatic NCM? Lots! Here are some ideas:

Join a support group like the Nevus Network! Studies show that cancer survival rises with group therapy. Makes sense to us. People feel less alone and isolated, especially with a rare skin condition like a giant nevus. And we also hope that group participation will help to prevent cancer. Hint, hintÖ.keep your contact information up-to-date in our database!

Deal with stress in a positive way. Cut down, cut out, homeschool, change schools, change jobs, whatever it takes to find serenity and calmness. Negative stress weakens our immune system, increasing the risk of cancer. For nevus kids, school is often a major negative stressor with all the negative socialization that occurs there. Thank goodness homeschooling now exists!

Eat more fruits and veggies. Remember 5-a-day keeps the doctor away! Go vegetarian as much as possible. People who are meat-free (like 7th Day Adventists) live on average 7 years longer. Meat-eaters get melanoma more than non-meat-eaters. Letís hope our parents wonít reward us nevus kids with a Happy Meal after nevus surgery very often!

Eat less fat and grease, like butter, ice cream, cheese, etc. These things should all be eaten sparingly as a diet high in fat seems to increase the development of melanoma. Instead try more fruits, veggies, yogurt, soy milk. Grocery store fruits and veggies often taste like cardboard, so try in-season ones from a farmerís market. Youíll be surprised what a difference produce in season tastes like! (This from a farm girl who grew up with the plumpest, sweetest produce available and doesnít know how city people survive on store-bought food! With cardboard fruits and vegetables, it's no surprise that 40% of adults don't eat a single fruit and 20% don't eat a single vegetable on any given day.)

Stay smoke-free and drug-free, as these both increase the risk of cancer. Drink alcohol very moderately for the same reason.

Stay slimÖ Pudgy humans get cancer more frequently. This means tiny portions of food for all of us! People who have a junk food addiction, which is a high percentage of the population, might try attending a 12-step group like Overeaters Anonymous at

Get exercise. Use it or lose it. Exercise boosts the immune system. Athletes who get cancer seem to live longer than non-athletes. Yes, we need to be careful about the sun, but we still need to get outdoors in natureís beautiful world. More and more kids stay inside all the time now, so they miss out on half the fun of being a kid.

Now about melanoma and the sunÖ. Sun exposure is associated with increasing melanoma risk, but exactly how is not yet known. Intermittent, blistering sun exposure seems the most risky. Nonetheless, the biggest predictor for melanoma is a mole that is new, unusual, or changing. Any new, unusual, or changing mole needs to be checked out by a doctor very soon. People have gotten melanoma and died of it from a mole in the armpit. They did not go to the doctor soon enough because they didnít think it could be melanoma, as the armpit never gets any sun exposure. People have tried to avoid melanoma by never going outside and still gotten it and died of it. And once melanoma has spread, called metastatic melanoma, no known medicine or chemo has yet been shown statistically to lengthen survival. We need to go early if we have a new, unusual, or changing mole of any sort and in any location, including the armpit and the soles of the feet.

So what should we nevus people do? Be prudent with sun exposure, wear lots of clothes, pants, long-sleeve shirts, hats, sungloves, parasols, go out in the early morning, late evening, stand in the shade when possible, etc. But go out and live life to the fullest! Life is short. It will be over soon enough for all of us anyway. AND go to the doctor if we think we have a new, unusual, or changing mole,especially if you are a man. All three of our adult men with giant nevus and melanoma delayed going to the doctor for several months and two ended up dying. Perhaps those two would be alive if they went earlier to the doctor. Now we all know from personal experience that medical people can be a hassle to deal with. But if we truly think something is going on, we must grit our teeth and go. For tips on making the visit easier, see newsletter 12.

The other thing we donít want to do is cry wolf and run to the doctor with every little tiny change in our moles. We all have so many, we would be living (wasting?) our lives in the doctorís waiting room! Most nevus kids will get a few biopsies of suspicious moles over time and each one leaves a tender scar forever. So we donít want to wear ourselves (and our doctor) out with endless skin checks and biopsies. They are expensive, stressful, traumatic, and a hassle. We need to walk a fine line, not going for every inconsequential thing, but going when we are truly convinced that something is not right. Having someone take detailed skin pictures of us is a great help in trying to figure out whether a skin change has occurred or not. That will save us lots of unneeded biopsies!

Whatís one other thing we can do to help prevent melanoma? Develop an attitude of gratitudeÖ.We must be thankful most of us only have one rare disease, giant nevus, rather than two or three. (Yes, we do have 2 members each with three different rare diseasesÖ.both coping very well!) And most of us can walk, talk, see, and hear, which makes for happiness right there! Carpe Diem!

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