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Patients: Be Your Own Advocate!

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Debra Black got hit with the lucky stick. I say that not because she leads a life of privilege and prominence, but because she was able to jump off the malignant melanoma train to nowhere good, just as it was leaving the station. Here's her story.

Deb was clicking along on all cylinders, mothering four spectacular children, being wife to a highly successful businessman, producing Broadway plays and traveling the world, which was and is her passion. And then, in a heartbeat, the angel of misery knocked on her door.

Ten or 12 years ago, Debra was diagnosed with an in situ melanoma, meaning it was superficial and encapsulated, requiring no further treatment except for visits to her dermatologist for body scans every three months. She did as she was told. Three years ago, she noticed "a wart" on the bottom of her foot that bled and just wouldn't quit. She conscientiously sought the opinion of her dermatologist, a top-flight New York doc, who said it was "nothing." She went for second opinions to other doctors who also said it was "nothing." Months went by, and her foot continued to bleed and ache to the point where walking was difficult. Finally, an empathetic friend got her to a podiatrist who took one look and sent her for further testing, and "nothing" turned into something, big-time. Debra was diagnosed with a large, 4.2 millimeter melanoma and, almost immediately, was on the operating table for extensive surgery, with months of tests, treatment and more surgeries to follow. Her recuperation was not just physical but also mental, as she faced down bone-chilling fear while staring into the abyss.

How could this happen to a highly intelligent woman who had the means to seek the best medical advice and did? The crucial answer to that question is my reason for writing this article: I want to remind you that doctors are only people; they make mistakes. And sometimes we tend to give them too much power. When a doctor tells us it's "nothing" and that voice inside says "I'm not feeling comfortable," we MUST be our own advocates, speak up and ask for a biopsy just to make sure. Doctors may have the technical knowledge, but we have our instincts, and here's the bottom line: if the diagnosis is wrong, we, not they, pay the price. They'll say "I'm so sorry," and we could die. That may be extreme, but not really. Don't worry if your doctor looks at you askance, calls you a hypochondriac or, even worse, gets insulted. Opt for definitive testing so that peace-of-mind and good health will continue to be yours.

So what's become of Debra Black, who could have retreated and spent her days worrying about the future? To her great credit, she chose to mine her strength and become an activist, turning major lemons into a delicious new recipe for lemonade. Debra, along with her husband Leon, donated $40 million to form the Melanoma Research Alliance, whose goal is to fast track research, find a cure, increase public awareness, and encourage early detection. Under the aegis of the Milken Institute and her friend Michael Milken, a true champion in funding cancer research if ever there was one, Debra has become the Johnny Appleseed of MRA, traveling the world and telling anyone who will listen that the sun is not your friend, early detection is crucial, and melanoma is no joke.

There's good news on the horizon. Several members of Congress are considering legislation requiring that warning signs be displayed on tanning beds, whose UV rays are considered carcinogens, an important fact that most don't know. Also, according to a phase III randomized controlled trial, an immunotherapy called Ipilimumab (or anti0CTLA-4) offers improved survival for patients with advanced metastatic melanoma. And finally, a molecularly targeted therapy, PLX4032/RG7204, an inhibitor of mutated BRAF, has caused tumor regression in patients with advanced metastatic melanoma.

Very serious stuff, this. How 'bout, we'd all rather not have to learn to pronounce the names of those therapies and drugs? Rock on, I say. So, bottom line, I'm telling you what I tell my kids: be pro-active, be your own advocate, protect yourself in the sun, and then enjoy your days in robust good health with an appreciative zest for life. I know Debra Black does, that's for sure.

The following are suggestions from two prominent dermatologists on how to be smart in the sun. First, Dr. Mary Ellen Brademas, Clinical Associate Professor of Dermatology at NYU Medical Center:

1. Early detection is everything: visit your dermatologist to establish a baseline with a full body check, and then see your dermatologist as often as is recommended.

2 . Essentially, the only safe sun is no sun. But when you're outdoors, opt for sun block, hats with large brims, tightly woven shirts and pants, gloves, a wet suit and mask. (Nice to find a doctor with a great brain and a sense of humor!)

4.Wear sun block that protects against UVA and UVB rays. Look for mexoryl, titanium dioxide and zinc oxide in the ingredients. Pigmented sun block is better than white or clear.

5. Re-apply your sun block often: before you swim, after you swim, every few hours. Applying it once is not enough. Wear sun block every day when outdoors even when there's a cloud cover.

6. A tan is a sign of damaged skin, not of being affluent or having sex appeal.

7. The ozone layer is depleted, which makes us all more susceptible to the damaging rays of the sun.

Dr. Teresa Soriano, Assistant Clinical Professor and Co-Director of the Dermatologic Surgery and Laser Center at UCLA Medical Center:

1. Early detection is everything: visit your dermatologist to establish a baseline with a full body check, and then see your dermatologist as often as is recommended (sound familiar?)

2. Check yourself every month and notice any new or changing moles that itch, bleed, vary in color or have surface or border irregularities, all of which are warning signs for melanoma.

3. When exposed to the sun, seek shade (remembering that the UV rays are strongest between the hours of 10 a.m. to 4 p.m.). When possible wear protective clothing like wide brimmed hats, sunglasses, long sleeve shirts, and pants when possible. Choose clothing with non-porous weaves and apply sun block beneath.

5. Wear a broad spectrum sun screen that blocks both UVA and UVB rays with an SPF of at least 30, and apply to all exposed skin areas.

For more information contact: www.MelanomaResearchAlliance.org

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