9 Questions to Ask a Doctor About Stage IV Melanomaby Krista Bennett DeMaio Health Writer
“You have stage IV melanoma.” Just hearing those words can leave your head spinning. What does that even mean? What happens next? It’s dizzying. It may feel impossible to focus on what your doctor tells you. Or, maybe you don’t even know what to ask next. We get it, which is why we put together this list of essential questions to ask during your next appointment—compiled with help from doctors who treat the disease—so you can be clear about what your diagnosis means for you, and what lies ahead.
What does stage IV melanoma mean?
You probably know that stage IV is the most advanced stage of melanoma, skin cancer that develops in your melanocytes (pigment-producing cells). “More specifically, it means your skin cancer has spread to other areas of the body, the soft tissue such as lymph nodes and distant organs such as the lungs or brain,” says Philip Friedlander, M.D., a medical oncologist at Mount Sinai School of Medicine in New York City. You may also hear it referred to as metastatic melanoma. Yes, it’s the most serious stage of the disease, but it may be treatable thanks to recent drug advances (more on that later).
What’s my sub-stage of stage IV melanoma?
Not all stage IV melanoma is the same. “There are different sub-stages within stage IV and it’s important for patients to ask their doctor which one they have,” says Allison Betof Warner, M.D., a medical oncologist at Sloan Kettering Memorial Hospital in New York City. The various stages are:
- M1a, which means the melanoma has spread only to soft tissue sites such as muscle and/or lymph nodes
- M1b has spread to the lungs
- M1c has metastasized to the liver and other organs
- M1d involves the central nervous system (such as your brain and spinal cord)
Which tests will I have?
If you have a stage IV diagnosis, you’ve probably already had a biopsy. You may have also had a lymph node biopsy as well as some imaging tests such as an MRI, CT scan, or PET scan to see where your cancer has spread. The tumor will also be tested for common DNA mutations (a process known as molecular profiling) that can help your doctor zero in on the treatments that will work best for you. About 50% of melanomas have a BRAF mutation, while the MEK mutation is another common one. There are successful drug treatments that target both of these mutations.
How long will it take to get my lab results?
There’s nothing more nerve-wracking than waiting on test results. “Biopsies can take a matter of days or weeks, depending on how complex the specimen is to read,” says Dr. Friedlander. As for those mutations, it may take a while to find out if you have one. “Molecular profiling takes several weeks,” he says. Having this expectation upfront will save you the stress of waiting by the phone.
Which doctors will I see?
You’ll learn pretty quickly that it takes not a single doctor but a multi-skilled team to treat stage IV melanoma. Your diagnosis will likely start with a dermatologist. You may then be referred to a surgical oncologist, who can decide if some of your cancer can be surgically removed. You’ll also have a medical oncologist on your team, who will come up with your drug treatment plan, which may include immunotherapy, targeted drugs, chemotherapy, and radiation.
What’s my prognosis?
This is a tricky one. “It's really hard to pin down a prognosis at first because how you respond to the therapy is the biggest determinant of how you’ll do,” says Dr. Betof Warner. She explains that 10% to 15% of patients will have a complete response with immunotherapy, having all their melanoma disappear, even in stage IV. “If you’re among that lucky group, your prognosis is excellent.” The good news is melanoma death rates are decreasing. A study in the American Journal of Public Health reported that melanoma death rates declined by 18% in whites in a three-year period.
So, what are my treatment options?
Unlike some other cancers, chemotherapy isn’t the go-to for melanoma treatment. It’s not that it doesn’t work, it’s just that there are better options. If your melanoma has one of those gene mutations mentioned earlier, you’ll likely start on a targeted drug—a BRAF or MEK inhibitor—which acts on proteins in the mutations, halting tumor growth. No mutation? The next choice is immunotherapy, or drugs known as checkpoint inhibitors. These meds help activate checkpoints in your immune cells, so they can fight off cancer. Also, ask your medical oncologist if there are clinical trials you might be qualified for.
How long will I be on meds?
You’ll likely be on immunotherapy for two years. “There are a select number of patients who will stay on it for longer—until we think their tumors have shrunk the maximum that they’re going to, and a period of stability past that,” says Dr. Betof Warner. For targeted therapies, you’ll be on for as long as it works. “Targeted therapy is like putting up a roadblock for the cancer. The fear is that if you take the roadblock down, the cancer may start growing again,” she says.
How can I manage my symptoms?
Dr. Betof Warner wishes more of her patients would ask this question. “So often, patients assume that because they have stage IV cancer, they should feel badly, and so they don’t ask about symptom management, whether that be nausea, pain, reduced mobility, etc,” she says. These options may be helped through drug interventions or integrative medicine, including many complementary treatments. “Most of these symptoms are really quite manageable and may even go completely away,” she says. “But I can't treat something that I don't know about.”