Advanced Stage Melanoma: Navigating Information Overload

M.A., Health Writer
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As a commercial airline pilot, Marty Keller of Fort Worth, Texas, was seeing the world and doing the job he loved. At 49, he was happy and healthy — or so he thought — until a routine visit to his dermatologist in August 2011 began a seemingly unending nightmare that also ultimately ended his career just months later.

On that August day, the doctor saw a suspicious mole on Keller's neck and removed it. "It had been itching me around the collar of my work shirt," Keller told HealthCentral in a telephone interview. Two days later, he got a call to see a surgeon, who would soon remove the rest of it: 1.6 mm deep, nearly 1/16th of an inch, the mole was diagnosed as a Stage 2A melanoma.

There would be more surgeries over the next few years: three neck, two abdomen, two brain, one lung, and 18 rounds each of radiation to his foot, abdomen, and brain — for six inoperable tumors there — followed by two Gamma Knife procedures, an advanced type of radiosurgery for the brain.

Here's the good news: This father of three has been declared NED, or "no evidence of disease," since December 2015, an outcome he attributes to keeping organized, advocating for himself, and building a strong doctor-patient relationship — critical actions for anyone who faces advanced melanoma.

Decisions, decisions

Keller's ordeal may be one for the melanoma record books. A man of clear thinking — as evidenced by his pilot job requirements — he had to think strategically to stay alive, every step of the way, so he made his own cancer "flight plan." That included moving on from the first oncologist with whom he felt no connection.

"His office overlooked a cemetery, and that bothered me," Keller says. The second oncologist had no interest in clinical trials and Keller wanted options. Going for treatment at a cancer center out of town meant days away from his family. Finally, he found a local oncologist with whom he felt very comfortable. "I didn't worry when I didn't bond with those first two oncologists," Keller says.

Now revitalized and hopeful, Keller has plans to work on trails as a volunteer in Colorado’s Rocky Mountains. He's also a Special Olympics volunteer. His faith remains a pillar. "This is what God wants me to do," he says.

You're in the driver's seat

"There will be about 90,000 cases of melanoma this year, of which 12,000 will be stage 4," says Valerie Guild, president of AIM at Melanoma, the largest international melanoma foundation seeking a melanoma cure. She founded the organization in 2004, after her daughter, Charlie, was diagnosed stage 4 and died nine months later.

Patients used to live an average of 9 ½ months after a stage 4 diagnosis, but now the length is 2 ½ years, Guild told HealthCentral in a telephone interview. Even with the improved response to therapies, 70 percent of people with stage 4 will progress and the cancer will be fatal. That's why a patient needs to be smart, organized, and assertive about seeking the best treatment.

"If I have a hangnail, I'll go to a hangnail expert, and for good reason," Guild says. "The decision you make on the first day you start treatment, if it's a poor one, could severely limit possibilities and future options."

Shelby Moneer, director of education for the Melanoma Research Foundation, agrees with Guild about seeking that melanoma expert. "If distance is an issue, remember that cancer centers will work with local oncologists," she says. "Patients can get a second opinion at a center and then be treated by the local oncologist."

Make the most of visits

Your mind will be racing at that visit, so take someone with you to take notes, Moneer suggests. "And have your questions written down to be sure you receive all the answers you want. If you don't understand the question, ask again."

In her educational role, Moneer endeavors to give patients every piece of information she can — but it's never couched as medical advice. "You must be informed to make the best decisions. Sit on the information. Then read at your convenience."

It's helpful to understand the lay of the land from the get-go, says Guild. "An oncologist in your community may see two melanoma patients a year out of 2,000 to 3,000 patients. It's just impossible to be very familiar with 216 cancers that occur in the body. Thirty years ago, with nothing for cancer except chemotherapy, it mattered little where you went for treatment."

New treatments now include U.S. Food and Drug Administration (FDA)-approved immunotherapies that target the immune system. A study published in CURE found this treatment modality improved survival benefits for Stage 3 and 4, but caused greater toxicity.

Captain of your team

This is about you, so don't worry about a provider being "offended" when you want more information about your condition. Book an appointment with your treatment team with the goal of talking everything through that's on your mind, Guild advises.

"There are so many drugs if you don't have a particular mutation. If you do, you must do your due diligence," she says. "Unlike with some cancers, such as breast, where patients may have up to 15 years in remission, you must move quickly."

That's because you don't have months to make treatment decisions, she says. "No one with stage 4 is going to see 12 different experts, especially without treatment, if they have six months to live. Remember if you do immunotherapy locally and it fails, you won't find great alternatives in your neighborhood or community practice."

Most clinical trials happen at academic medical centers. "For instance, once you've done immunotherapy, and used a particular drug to treat your melanoma, it can sometimes make it difficult to find another clinical trial," Guild says. "Researchers want patients who are immunotherapy 'naïve.'"

"There are probably 600 trials happening now," says Moneer. Especially in stage 3 and 4 trials, "don't worry that you're going to receive a 'sugar pill or placebo' versus real medicine since that rarely happens in oncology trials any longer — especially melanoma trials."

As a current review in UpToDate confirms, "you and your family must consider the risks and benefits of each option according to your values and preferences." Be confident about doing what's right for you when you make your choices.

See more helpful articles:

What is Melanoma?

Four Types of Melanoma

The Importance of Follow-up Care after Surgery for Melanoma Treatment