Trust Your Gut & Other Tips for Facing Melanoma
20 April 2023 | Events, Melanoma Stories, Treatment
Whether new to melanoma or well into your journey — as a patient, survivor, or caregiver — practical tips, strategies, and advice were shared at the 2022 MRA Melanoma Exchange Patient and Advocate Forum. Speakers at the Forum discussed what types of providers to seek, how to find information about your disease, how to advocate for yourself and your loved ones, and how patients and caregivers can find support.
Finding the Right Providers
If you notice a suspicious mole or other sign of melanoma: “Find the dermatologists and oncologists that specialize in melanoma, preferably ones connected to a large research center that can get you access to clinical trials and the best treatment available,” advised Christine Garrison. Christine’s daughter, Rebecca, died when she was 32-years old from melanoma that was initially misdiagnosed as benign by a dermatologist she saw for a fast-growing mole on her back.
“You need to remember that providers are humans [they can make mistakes], so it’s okay to question them and get second opinions,” stressed J.B. Ward, a survivor of a vaginal mucosal melanoma, whose first oncologist told her that there were no treatments for her type of melanoma and that she only had a 5% chance of surviving five years when she was diagnosed in 2016. However, she sought a second opinion at MD Anderson Cancer Center where she had a totally different experience. There, her provider was experienced with her rare type of melanoma and knowledgeable of the innovative immune therapies that were just becoming available. “I walked in and told her I had already gotten the bad news about my melanoma, but after she started to talk, I thought maybe it’s not as bad as I’d been told,” Ward said. She was successfully treated with immunotherapy and has now been disease free for five years.
“Trust your gut when it comes to your treatment and if something feels off, question it.”
“Trust your gut when it comes to your treatment and if something feels off, question it,” stressed Amy Jardon, a seven-year survivor of acral melanoma. Jardon, who blindly trusted her small-town oncologist, realized that her doctor had little to no experience treating her rare melanoma subtype that formed between her toes. “I always left her office wanting something more. I felt like I wasn’t getting good answers—no one explained that my melanoma was different. I finally decided it was not okay to walk out of the oncologist’s office with a queasy stomach and feeling like I’m not getting what I need to know,” Jardon said. Once she realized the screening advice the oncologist gave her was inconsistent and didn’t seem to be evidence based, she asked for a referral for a melanoma specialist in her state.
“This is where I should have been seen from the get-go,” she said. “At the melanoma medical oncology department, I felt like I came home. These people knew what acral melanoma was and could explain it to me. Feeling heard is so important. Trust your gut.” Jardon said.
Beyond just seeking out a melanoma specialist, Dr. Hensin Tsao — a dermatologist and researcher at Massachusetts General Hospital — emphasized the importance of seeking out a multidisciplinary team of providers that include dermatologists that specialize in melanoma, surgeons that specialize in cancer, and medical oncologists that have expertise with the type of melanoma you have. “You should go to a center with a multidisciplinary melanoma clinic because they will have a multidimensional approach and be in tune with the latest developments,” he said.
Dr. Danielle Bello — a surgical oncologist and researcher at Memorial Sloan Kettering Cancer Center — agreed, noting that patients at these clinics will find out early in their care about clinical studies that might greatly impact their treatment options and outcomes. She gave the example of clinical trials currently exploring the use of checkpoint immunotherapies prior to surgery to remove their tumors. These innovative treatment strategies are showing promise in reducing the risk of recurrence for some types of early melanoma, and for improving outcomes for patients with advanced disease, as well as revealing what treatments might work for them in the future. “People have to know about clinical trials from the time they go to the dermatologist or surgeon’s office and not just when they go to their medical oncologist,” said Dr. Bello. “If a patient comes to a physician and isn’t informed about trials that are going on, it’s a missed opportunity.”
Dr. Rodabe Amaria — a medical oncologist and researcher at MD Anderson Cancer Center — added that people who live in rural areas, far away from major medical centers, aren’t entirely left out of potentially lifesaving clinical trials. “Cancer research occurs outside of these big centers so try to find clinics that participate in the National Cancer Institute’s Cooperative Groups, which engage in good research,” she said. To find out about clinical trials, one participant at the Forum suggested MRA’s Clinical Trial Navigator which provides patient-friendly information about available clinical trials, unlike clinicaltrials.gov, which is more oriented towards medical providers.
Finding the Right Information About Melanoma
Information can be empowering for some patients as long as it is the right kind of information, both Jardon and Ward stressed. When she searched the internet for information about melanoma, Jardon prioritized information provided by government organizations, such as the National Cancer Institute, trusted non-profit organizations like the Melanoma Research Alliance, and disregarded information that wasn’t current. Access other tips on getting up to speed after your diagnosis.
“It gives the patient strength if they can make treatment decisions helped by people who have the knowledge they need,” a Forum participant offered. For those willing to dig deeper into more scientific findings, Ward suggested researching the latest on PubMed or other reputable online medical journals.
Finding a Supportive Community
Patients also need to find a supportive community, Ward, Garrison, and Jardon stressed. Ward and Jardon found it helpful to join or start Facebook groups that share information and provide support for people with their specific type of melanoma, as well as being a part of the MRA’s Melanoma Exchange online community where they can connect with other people who also have these rare melanoma subtypes. “It felt like I was in a sea of people with cutaneous melanoma and nobody really understood my subtype, so finding those people who did was great,” said Jardon.
Ward added “Before I found the Facebook group for mucosal melanoma patients, it was very isolating. It’s been hugely helpful just connecting to people who are going through something similar and being able to mentor people just starting their melanoma journey.”
Supporting the Caregiver
Garrison noted that caregivers of loved ones with melanoma also need support. “Be sure you’re not alone as a caregiver and find someone who is willing to support you,” she stressed. She also suggested that caregivers take time each day to do something they enjoy and that centers their own wellbeing. “Some people need to take a walk out in nature while others need to hit their yoga mat or have a circle of friends they can see,” she added.
Jardon suggested contacting a local pharmacy or other resource that might have information about volunteers willing to relieve caregivers of their responsibilities for an hour or two. “Just because you are the caregiver doesn’t mean you have to do it 24/7. You need to take time for yourself as well as keep yourself healthy,” she said.
Another Forum participant stressed hiring people who can help with caregiving tasks, if possible, to allow you to spend more quality time with your loved one. “You can hire a caregiver but you can’t hire a wife, a daughter, a mother. Your loved one doesn’t need you to be cleaning toilets but rather sitting there reminiscing with them because you are the only person in the world that can do that for them,” she said. She added that many senior centers and the American Cancer Society have resources available for those that cannot afford to hire help.
Garrison pointed out that there are also support groups that provide emotional support for caregivers. She added that a year after her daughter died, she felt like she still needed support and that it helped to join the Melanoma Action Coalition. This coalition not only gave her practical support for the foundation she started in her daughter’s memory, but connected her to others who had lost loved ones to melanoma. “We don’t just support each other in organizational ways, but are very much a personal support community,” she said.