9 Crucial Steps for Anyone Diagnosed With Metastatic Melanoma

Use your doctor as your first, and best, resource for any information you need about your new metastatic melanoma diagnosis, says Trevan D. Fischer, M.D., assistant program director of the Complex Surgical Oncology Fellowship program at John Wayne Cancer Institute at Providence Saint John’s Health Center in Santa Monica, CA. “I would encourage people to ask as many questions as they can. If there’s something on your mind, you need to ask,” he says.

Treatment advances in metastatic melanoma have radically improved patients’ survival rates, but those changes have happened in the last 10 to 15 years. If you read stories from 2005 or earlier, they might not reflect the outcome of a metastatic melanoma diagnosis today, says Vadim Gushchin, M.D., director of The Melanoma and Skin Cancer Center at Mercy Medical Center in Baltimore. He recommends patients get information from reputable sources that clearly update their stories to reflect the latest advances, like the National Cancer Institute, Cancer.Net, and the American Cancer Society.

Now’s the time to ask yourself if you’re comfortable with your doctors—yep, plural, including cancer specialists—before you start your cancer journey, which could take you years into the future with these healthcare professionals. Dr. Fischer explains: “You’ve got to feel confident in your team, and feel like your medical team can provide you with the level and support of care that you need.” Seek a second opinion or doctor now, if your gut says so.

If you’re comfortable, ask your doctor (not the internet!) for your cancer prognosis, which the National Cancer Institute defines as “the likely outcome or course of a disease; the chance of recovery or recurrence.” Knowing your chances can help you better understand what treatments might be the best option. If you’re uncomfortable discussing it right now, that’s OK too, and you can perhaps bring it up at a later date (or let your doctor hopefully gently share such information with you).

Once you know your prognosis, it’s time to talk treatment options, Dr. Gushchin says. These can range from surgery and radiation to immunotherapy and targeted therapy (and more). “Sometimes it’s not easy to figure out which solution is better,” he says. “We suddenly have so many different treatments.” One relatively straightforward option: If you have the BRAF mutation (as about half of people with metastatic melanoma do), BRAF inhibitors have proven effective. Another factor: Which side effects can you tolerate? This leads us to…

It’s important to discuss side effects with your doctor before you start treatment—for instance, if vomiting is your personal version of hell, you can discuss therapies that are less likely to result in that side effect. Or your doctor can prescribe an anti-nausea medication to stop the potential side effect before it happens. Or you go home after treatment, armed with the knowledge that nausea might happen and a script for that anti-nausea medication. Winners all around.

Thanks to clinical trials, people with metastatic melanoma have so many more treatment options available. Clinical trials could offer you the possibility of a new treatment in your cancer journey, too. But “the best reason to participate in clinical trials is to advance knowledge about treatment,” Dr. Gushchin says. They can also be an excellent way to try a new therapy while receiving personalized care and transportation from a clinical trial staff, he says.

Family and friends can provide wonderful care and support when you have stage 4 melanoma, but they won’t be able to fully grasp what you’re going through unless they’ve experienced it themselves. That’s where a support group of other advanced melanoma patients comes in. These groups can offer you information, assistance, and just a shoulder to cry on. Here are some online options: Cancer Care Melanoma Patient Support Group; Cancer Support Community: Metastatic Melanoma; Melanoma Research Foundation: Connect With Others

Survivorship—when you have no signs of cancer after completing treatment or are living through a cancer diagnosis—is an important time in your life, often the moment you’re looking forward to in your cancer journey. So what will it look like? Will you need 6-month follow-up visits with your cancer doctors (likely for several years after treatment ends)? When should you make your first follow-up visit? What if you move? Discuss these, and any other questions you have about survivorship, with your doctor, Dr. Fischer suggests. Holding a picture of what the future holds will help sustain you through the tough stuff.