Melanoma is a potentially deadly skin cancer that’s usually associated with excessive sun exposure and tanning. But as theater producer Debra Black discovered, some melanomas occur on parts of the body that get little or no sun at all. Her story is both a cautionary fable about the need to act as your own healthcare advocate and an inspirational tale of passionate commitment to a cause.

Let’s start with a little background. How would you describe yourself?

I have a husband and four children. When they were small, I was mostly at home as a mother. Then as my children got older, I started working at NYSCA, the New York State Council for the Arts. I started producing theater, off-Broadway and on Broadway. [Black’s credits include The History Boys, Dirty Rotten Scoundrels, and the just-closed A Behanding in Spokane. –Ed.] I’ve worked with a lot of not-for-profit organizations, like The Public Theater. I’m on the board of Rockefeller University.

Basically, I see myself as hard working, very much a team player. I’m very family oriented and community oriented. I’m on my children’s school boards—that type of thing.

And then…melanoma. What happened?

Ten or twelve years ago, I was diagnosed as having an in situ melanoma. If caught early, it’s not a great danger. But because of that, I knew I was high-risk for more skin cancer. I was told to see a dermatologist every three months for a full body exam, and I did.

Then, three years ago, I was diagnosed with Stage II melanoma.

Two years before that, I noticed what I thought was a wart on the bottom of my foot. It started acting up, started to bleed. My dermatologist—a top doctor at a top institution—told me that it was nothing, a wart or a ganglia. I said, ‘But it’s bleeding.’ He said, ‘Warts bleed.’ Months went by and it continued to bother me, to the point where I was having difficulty walking.

Luckily for me, a friend took me to her podiatrist. He looked at it and said, ‘I’ve been doing this for 30 years, and no way is this a wart.’ I said, ‘But I’m seeing one of the top dermatologists in the city, and he says it’s a wart.’ The podiatrist sent me for a 3-D sonogram, and immediately the results came back: ‘It’s melanoma. You’re lucky—it’s encapsulated [meaning that it was compact and hadn’t spread].’ It was large—4.2 millimeters. My doctor took it out.

It was Stage II, quite thick and ulcerated. Everything you don’t want, I had. I had to have two further surgeries on the bottom of my foot.

How awful.

It was pretty shocking. I just couldn’t believe it. I have to say, initially I was quite depressed. Physically, I had to keep my foot above my pelvis 23 hours a day. I was in a wheelchair, then had a walker.

So my husband and I decided to find out more about this. We discovered to our horror that if it’s not caught early, melanoma can be fatal. If it’s Stage III or IV, only 5 to 15 percent of patients survive to five years. Most people with Stage IV, where the cancer has spread to a distant site, don’t survive more than nine months.

I found myself looking at the abyss. Thinking that I wouldn’t live to see my children grow to adulthood.  But I was one of the lucky ones. It’s now three years out, and I’m doing great. My daughter graduated high school this week.

Luckily, Mike Milken is a close friend and is quite knowledgeable about cancer. [Milken founded and heads the Prostate Cancer Foundation, which supports global medical research in this area. –Ed.] His father actually died from melanoma. Mike asked if we wanted to do for melanoma what he had done for prostate cancer, and we said yes.

So in 2007, you created the Melanoma Research Alliance.

That’s right. We initially committed $25 million, and we just committed another $15 million. Our goal is to now grow the organization and make it self-sustaining.

Melanoma is the fastest-growing cancer. People don’t realize how dangerous it is. When we were growing up, we didn’t know that the sun could be dangerous. In this country, a person dies of melanoma every hour.

But my particular melanoma doesn’t come from the sun. There are at least eight kinds. You can have it in the vulva—four percent occur there. You can have it internally, or behind the eye.

Research for melanoma is woefully underfunded. Our foundation is funding research so there will be options for people at great risk. We reach out to pharmaceutical companies, to government, to major research centers in Houston, in New York City, in London, in Amsterdam. Our goal is to work with every foundation, every organization that’s active in this field.

Right now, we’re at a breakthrough, amazing moment in melanoma research. A new biomarker has been discovered, which 50 percent of people with melanoma have. There’s a new medication that puts people into remission for nine months or longer. But the cancer finds another pathway, so we need other agents. So one of our goals is to get different drug combinations, so we can give patients the opportunity for combination drugs. We just had our third funding cycle for new research grants last week.

What advice can you offer WVFC readers?

If something doesn’t seem right, even if you love your doctor, don’t just listen and say okay. Ask for a second opinion or a biopsy. You have to be your own advocate.

Even if you do what you’re supposed to do—and I did, going for a full body check every three months—sadly, doctors are human and they make mistakes. I hear this time and again, talking to people.

The other thing—insist that your husband or partner or children go for body checks. Most skin cancers, especially the deadly ones, can be caught by body checks. They catch the vast majority of them.

And finally, visit the Melanoma Research Alliance website. There’s a lot of helpful information there.

Thanks for sharing your story. It’s going to make a lot of us think differently about sun exposure this summer!