Progress in melanoma treatment: Patient’s perspectives

Abstract

Upon the 20th Anniversary of the Society for Melanoma Research, we highlight the perspectives of patients aiming to help improve future experiences, outcomes, and their quality of life over the next 20 years. Five melanoma patients generously shared their inspiring and enlightening stories of diagnosis, treatment, and outcomes. Many patients had excellent medical teams that synergistically worked together to provide an accurate diagnosis, effective treatment options, and supportive care. However, it is clear that health inequities persist in communities where people of color are predominant, affecting early detection, patient experience, and outcomes. These stories shed light on the unique challenges faced by patients and how the lack of melanoma awareness and adequate resources, especially in communities of color or low socioeconomic status, can contribute to disparate outcomes in melanoma care. We expect that these stories will raise awareness about the progress in melanoma treatment but also the existent disparities in melanoma diagnosis and treatment and the importance of early detection and prevention.

Skin cancer, particularly melanoma, represents a significant public health concern worldwide due to its aggressive nature and high metastatic potential. Melanoma can affect anyone regardless of their background, race, or ethnicity; nevertheless, melanoma is often thought of as a white-only disease. Additionally, low-income communities, as well as communities of color frequently face unique challenges when it comes to healthcare access, awareness, and support. As melanoma scientists, we are constantly seeking answers to understand and treat this devastating disease. However, few of us have the opportunity to hear directly from the patients who are affected by this disease. As the SMR turns 20, we can proudly say that the melanoma field has made great strides in the successful treatment of this disease. However, health inequalities continue to affect different segments of the population, with communities of color bearing a disproportionate burden. We recently had the opportunity to speak with five courageous patients who generously shared their stories of successfully battling melanoma. Here, they recount their journeys as melanoma patients from diagnosis to treatment and discuss what they think should be taken into consideration for improved patient care and advancement in the treatment of melanoma.

Kristin McJunkins (KMJ)—

Diagnosed in 2008 with Superficial Spreading Melanoma Stage IIIA. Has been melanoma free since 2009.

Q: How did you first discover you had melanoma?

KMJ: I was first diagnosed with melanoma 15 years ago in April of 2008 when I was 38 years old. At that time in my life, I was going through the process of trying to have a baby, undergoing insemination procedures since Fall of 2007. It was not working and we did not know why. Following a hysteroscopy exam, my doctor noticed a mole on my leg. As my mother previously had basal cell carcinoma and I was not sure if the mole was changing, I decided to go to a dermatologist and have it checked out. A biopsy revealed that I had stage IIIA melanoma. I tested positive for a groin lymph node after the removal of the primary lesion and subsequent lymph nodes tested negative.

Q: How did this make you feel?

KMJ: Melanoma is the cancer that gave cancer a bad name, so I was terrified. My biopsy was on April 1 (a Tuesday), and my doctor called me the following Monday to let me know to cancel the insemination. To be honest, for the next several weeks, I was not sure if I was more upset about the cancer or not being able to go through with the insemination. I was sobbing with my fertility doctor after the news. I was my mom’s only child. I asked my doctor how to tell my mom that her only child might die of cancer. My doctor did not give me false hope but sat with me as much as I needed to talk about what the plan would be. I told my mom 24 h after meeting with my doctor and talked her through my plans. I was in a fog during this time, and I went back and forth trying to figure out if I was more upset about cancer or more upset that I would not have a child.

Unfortunately, I was unable to go through with having a child. One of my doctors explained to me that its “not that I can’t or that people don’t, but pregnancy puts you in an immunosuppressive state and if you have a melanoma, it could put you in a vulnerable state if it comes back.” I decided to not go forward, which was a massive struggle. But I know it was the right decision at the time.

Q: What are some questions you had when you learned you had melanoma?

KMJ: When I learned I had melanoma, multiple questions raced across my mind. “Will I ever have kids”? What is the treatment process? Is there a life expectancy attached to this? Luckily my nurse Molly was militant, in a good way, and helped give me strength. She would always say “you are going to do this” and helped coordinate everything for me.

Q: How was your experience with your doctor surrounding your diagnosis and treatment options?

KMJ: My doctors were great; I was very fortunate, especially compared to when I listen to what other people have been through during melanoma conferences. I had a great oncologist, surgeon, and dermatologist. My dermatologist specializes in melanoma, and we met regularly. One of the main reasons I still live in the same area is the excellent healthcare team that supported me through my melanoma journey.

In 2008, there were no effective treatments approved for metastatic melanoma. I was put on interferon as a first-line treatment after surgery (finished in June 2009). I was given a less than a 10% chance that interferon would work, nothing else was available. Over the years I have had other basal cells and squamous cells removed, but luckily no new melanomas. Surgery seems to have cured me.

In terms of my treatment path, my two surgeries took place in May and June 2008. By the end of June, I had to go to the hospital due to an infection at the surgery site for 5 days. I was then put on interferon for 5 days a week for 1 month but drops in my white blood cell count made it difficult to stay on treatment. I continued giving myself shots of interferon 3 times per week until June 2009.

My mom passed away some years later from Lymphoma, and her experience was a nightmare. The insurance process complicated her care; it wasn’t all unified in the same facility. She needed approval for everything (a scan, etc.). Every time she needed to wait for the hospital to approve a procedure, valuable time was wasted unnecessarily, even when it was a standard appointment. I was fortunate to be seen at Yale with an HMO and all my doctors under the same roof.

Q: What would you like the Society for Melanoma Research to consider when performing research and developing new treatments?

KMJ: I have had the opportunity to sit down on grant reviews for different mechanisms. I believe that thinking outside the box and finding the benefits of drugs like Keytruda in other cancers through connections will be beneficial for the field of cancer in general. As well as continued collaboration among members, more genetic testing opportunities, and early diagnosis with trials such as ctDNA in melanoma. I passionately believe in advocating for preventive medicine as well as the banning of tanning beds. In Australia, tanning is banned in much of the country. If people would have a least one general checkup and skin checkup a year, it would allow for early detection before a potential tumor advances, which is too costly for everyone involved. Additionally, targeting health professionals located in more rural areas or in primary care to be able to identify suspicious moles would be a beneficial endeavor. I also believe it is important to consider a post-treatment experiences of cancer patients, which can often include late and long-term effects caused by cancer treatment. I am a proponent of the Comprehensive Cancer Survivorship Act (CCSA) that was introduced in Congress last week (June 23, 2023), which addresses the existing gaps in survivorship care and improve the quality of care and navigation of health care systems for survivors, their loved ones, and their health providers.

To learn more about pregnancy and melanoma, we direct the reader to several informative previously published papers (Carter et al., 2022; Friedman et al., 2019; Peccatori et al., 2013; Still & Brennecke, 2017).

Patrick Guddal (PG)—

Diagnosed in 2016 with superficial spreading melanoma stage IIIB. Diagnosed in 2016.

PG: My melanoma was located on my scalp. It looked like a little bump, and I thought I had scratched myself, however, instead of healing it got bigger. My barber identified it as a mole during a haircut, and I went to a health provider to get checked out. I immediately got a biopsy and received the diagnosis at 8 AM the next day. I was first told I had stage IIB melanoma, then pathology showed it was stage IID, and a subsequent lymph node biopsy came out positive, which advanced my stage to IIIB. I had a full neck dissection, a grueling 6½ h procedure involving the removal of 81 lymph nodes. Finding out that all the lymph nodes from that procedure came back negative in July 2016 was an amazing moment that brought me to my knees. I was so grateful that the melanoma was cut out before spreading to distant organs.

Q: How did this make you feel?

PG: My melanoma diagnosis was a surprise, given that I was the first one to be diagnosed in the entire history of both sides of my very large extended families—one with three generations of family practice physicians, all passionate about preventive medicine. I played outside all the time without protecting my skin, without wearing sunscreen, and only had one bad sunburn I can recall in my life.

Not knowing about melanoma made me question everything I was told. I remember thinking all sort of things when I found out I had melanoma, such as “can’t you just cut it out?” When my neck dissection pathology came back clean, I thought “do we need to do systemic therapy?” It all felt compulsory though, the decision to continue with neck dissection and undergo CTLA-4 therapy. I admit I was very naive about the disease then, as many are.

My care team was awesome, and I had complete trust in them. The diagnosis was life-altering, terrifying, and a shock. I tried not to freak out and spiral too much before hearing what the doctor needed to say. The day I found out about my stage IIIB diagnosis and the need for a neck dissection, I spoke to my surgeon about my concerns for my mobility after the procedure. I recall feeling like a mess when hearing this and wallowing not in dread but feeling paralyzed emotionally. I decided I needed to snap out of it and immediately got up out of my chair and looked for something to do. It did not matter how trivial the task, be it folding towels or cleaning cat boxes just to keep busy and not think about it. During this trying time, I was actually promoted in my career as a librarian between two surgeries. But no matter the challenges I faced during this difficult time, I answered the call no matter what it was.

Q: What are some questions you had when you learned you had melanoma?

PG: Once I was diagnosed with melanoma, I was advised to avoid Dr. Google, and followed that advice. I tried not to clutter myself too badly with excess information when I first received the news. With so many things going on in my life at the time, I thought I needed to triage my energy and that included putting my full trust in my care team.

Q: How was your experience with your doctor surrounding your diagnosis and treatment options.

PG: I had a fantastic care team. My oncologist worked on melanoma and worked in collaboration with the Mayo clinic. I recall falling apart in my surgeon’s office because of the potential for the neck dissection to limit the use of my right arm, which would impact my passion for playing the guitar, drums, and golf. My surgeon was amazing though and had an amazing bedside manner. She did not always answer all my questions, however, she gave me faith that she would do her best. There are times when bedside manner and clinical ability do not often align, but I was fortunate to have both in her. With regard to treatment, I received 3 years of Ipilimumab; 4 high-dose, and 12 low-dose infusions. Despite my extensive melanoma network, I was one of only three people I knew who were prescribed the full 16 transfusions and made it through the entire regimen. That my treatment ended almost 4 years ago speaks to my success in terms of survival. I always temper the outcome I experienced though with immense gratitude because I was diagnosed at 55 years of age and survived and had friends who lost their battles in their 20s and 30s from this disease. This has left me with some survivor’s guilt. I address this guilt by giving back in the way of participating in a wide range of education and advocacy efforts, including the Melanoma Research Foundation’s Advocacy Days, as a spokesman for various organizations (e.g., Merck), and by launching my own nonprofit, Connect Melanoma, which engages in a broad range of education and advocacy programming at the local, state, and federal levels.

Q: What would you like the Society for Melanoma Research to consider when performing research and developing new treatments?

PG: As someone who had the opportunity to serve on the DoD and other grant panels, I can sense a true intimacy in the research community. Any efforts that advocate for increased research funding are welcome. As the de facto advocacy lead for Connect, research funding has been the primary focus of our efforts. Despite generous increases in funding in recent years, we are still told every year that impactful, meritorious research is left on the table, and that the money runs out before the high-scoring applications do. I will add, however, that I am grateful for the systems in place that facilitate healthy competition for these funding resources and the meticulously governed processes that award this funding. I am also grateful for the absolute commitment to the prevention and cure of this disease. I would love to contribute to efforts to bolster the funding for the MRP by way of an audience with the committees that set this funding. I feel sharing my story and perspective could contribute to a valid case for increasing this funding.

Information on the current melanoma treatment landscape in the USA is summarized in Table 1.

TABLE 1.

Standard of care in the United States (2023) (Long et al., 2023; Rosen et al., 2023).

Stage 0	Stage 1	Stage 2	Stage 3	Unresectable stage 3 and/or stage IV
Surgery	Surgery	Surgery	Surgery	Immunotherapies (IT)
		Adjuvent treatmenta (radiation, immunotherapy)	Adjuvent treatmenta (IT or TT)	Targeted therapies (TT)
		Clinical trials	Neoadjuvent treatmentb (IT or TT) Clinical trials	Combination of TT and IT Chemotherapy Radiation Clinical trials Palliative or support treatments

^aMedication is given after therapy to prevent the cancer from coming back.

^bMedication given before surgery.

Carla Rake (CR)—

Diagnosed in 2013 with superficial spreading melanoma.

Q: How did you first discover you had melanoma?

CR: I saw a random television commercial for melanoma, that prompted me to make an appointment with a dermatologist, the mole was irregular, red, raised, and growing. Things happened pretty quickly after I had a biopsy, and approximately 2 weeks later I received the melanoma diagnosis. Fortunately, I live in an area that has a lot of melanoma specialists. The dermatologist would not let me leave the office without an appointment to follow up with the oncologist who specializes in melanoma.

Q: What are some questions you had when you learned you had melanoma?

CR: I do not ever remember hearing of melanoma before my diagnosis, so I immediately googled it in my car after the appointment. This left me with more questions,” What would happen next? How long would I live? Will I die before my kids are grown?”

Q: How was your experience with your doctor surrounding your diagnosis and treatment options.

CR: I met with my oncologist about a week later, and he was able to ease my mind, he initially felt the cancer had not spread so he ordered all the tests, brain MRI, CAT Scan, bloodwork, etc. A wide excision was also scheduled to remove the initial mole and surrounding tissue. After the results of the scans were available, I was informed that the cancer had spread to the lymph nodes in my left groin, at that time it was recommended that the lymph nodes be removed. I think about 15 were removed from my left groin during a second surgery 2 weeks after the wide excision.

Unfortunately, when I was diagnosed all the clinical trials for the new meds were already underway and the only treatment available was interferon. I was treated few weeks with interferon, but could not complete the entire course as I was too ill and needed to continue to work full time. That was 10 years ago - I’m alive, and so far, no recurrence.

I feel extremely grateful that I had an amazing oncology team, I was able to ask any questions, and had no trouble contacting the team if needed, via phone or email.

Q: What would you like the Society for Melanoma Research to consider when performing research and developing new treatments?

CR: I felt like I needed to continue my melanoma journey so I began volunteering and advocating as much as I could. I quickly realized how lucky I am to live in this area where I have access to some of the best oncologists for melanoma, I also realized that many patients and families need to travel a great distance for treatments and care—I wish that could change, the local doctors do not seem to have any understanding of the complex treatment’s patients are receiving. I was also shocked to learn that insurance companies pay for and need to approve patients for clinical trials—I always assumed a clinical trial was completely paid for, this is leading to patients not receiving life-sustaining care and treatment for melanoma.

We need all the research and new treatments we can get, so much progress in the past few years is amazing—so, unfortunately, cost is a factor, also crossing state lines to receive treatments is a factor. Patients are getting denied and cannot afford to pay privately for treatments. Mucosal melanoma is another area that needs so much research and new treatments.

Chris Carr (CC)—

Diagnosed in July 2019 with stage III acral melanoma.

Q: How did you first discover you had melanoma?

CC: I first noticed a small region of discoloration on the pinky toe of the right foot at least a year prior to my diagnosis. I am someone who normally self-medicates unless something is really wrong. I thought it was a bruise, which would not be anything out of the ordinary as I live an active lifestyle as a jogger and cyclist. However, by February/March of 2019, it started to become very noticeable and made me feel like this could be a problem. It had changed color and began to hurt by the following May/June. It became very painful in different areas and made wearing regular shoes too painful, forcing me to wear sandals and slippers. I still have a picture a friend took of me wearing slippers at a rooftop party before I found out of my diagnosis.

I finally went to a clinic to get checked out. Urgent care was the first stop, and they had no idea what it was. I walked over to Woodhall in East Williamsburg and was brought into the emergency room. To paint a picture, I was put in a bed next to one guy with alcohol poisoning and another guy handcuffed to the bed frame. Around six doctors/specialists saw my toe but nobody in Woodhall knew what was wrong with my toe, one thought it was diabetes, and another thought it was a podiatry issue. All of a sudden someone told me I would likely lose my toe and that I should go for a biopsy in Bushwick. I went to a clinic in Bushwick to do a biopsy where they dropped my sample on the floor and were not even wearing gloves. I eventually went to Mt. Sinai as recommended by a friend; there the doctor finally recognized it as melanoma.

Q: How did this make you feel?

CC: After the diagnosis, I could not believe it, I was in shock. I was not sure what was the path forward. I felt angry, sad, scared, I felt socially ostracized, and was having panic attacks. My mechanism was despondency and booking a lot of shows.

Part of my feelings were fueled by how hard it was to find info on acral lentiginous melanoma, the subtype that I had. Statistics on mortality, conflicting data, and missing or limited data for what happens to people my age and my race/ethnicity are not easily accessible.

Q: What are some questions you had when you learned you had melanoma?

CC: What do people like me, my age and my race, do when diagnosed with this disease? I was not able to find much of anything about it.

Q: How was your experience with your doctor surrounding your diagnosis and treatment options.

CC: I want to give a shout-out to Dr. Shoushtari at Sloan, he was awesome, as well as Dr. Rottenberg. My entire team at Sloan was amazing. My doctors provided me with treatment options and explained the treatment. My doctor provided me with papers for me to read to be confident about the treatment I selected. Dr. Aryan was excellent, comforting, and knowledgeable. Dr. Aryan has a great bed-to-bedside manner and always talked through what surgery would look like with a number of meetings for prep for surgery. I was also funneled to Dr. Jennifer Haye who helped a lot with panic attacks.

Sloan has a targeted approach to help with what is the major threat; remove cancer to help you survive. Mental health is available, but you need to request it. Outside of Mt. Sinai, there was a lack of professionalism (one healthcare worker dropped my biopsy sample with their ungloved hands) and maybe worse, a lack of knowledge about acral melanoma. There should be more awareness about this subtype of melanoma.

Q: What would you like the Society for Melanoma Research to consider when performing research and developing new treatments?

One of the things that will be beneficial is to provide money for clinical trials to increase the recruitment of black patients. There is a lack of trust in certain institutions that needs to be addressed. For example, a person came in for research contributions through the donation of my acral melanoma sample. I asked about what would happen to my sample, and if would it be sold for profit afterward. The person instead of explaining simply said I could donate it or not. It is hard to express to people to care about black folks when they do not. Also, a challenge for the SMR community can address how we can make things that are rare but extreme things, like acral melanoma, be at the forefront for funding and attention.

Information regarding the treatment, prognosis, and survival of patients of color is limited, and we refer the reader to the following informative publications (Alicea & Rebecca, 2021, 2022; Elad et al., 2023; Lam et al., 2022; Qian et al., 2021; Rizvi et al., 2022).

Amy Jardon (AJ)—

Diagnosed in 2015 with acral melanoma.

Q: How did you first discover you had melanoma?

AJ: I discovered a lesion in between my toes one night in Jan 2015, alerted by the itching. We knew a spot suddenly appearing was not good, but we also had not thought of cancer, let alone melanoma. I had an appointment with my primary doctor who did a biopsy the following week. She repeatedly said, “This is nothing, don’t worry”. She also mentioned I would have the results by the end of the week. About 2 weeks later, I received a phone call from one of the nurses who stumbled over some words before she said “Melanoma.” At those words, I felt like a lead weight landed in my abdomen. Melanoma was nowhere on my radar. The nurse, without skipping a beat—or waiting for me to absorb this news—asked who I wanted to do the surgery. She seemed surprised when I said I would call back. It was over a year before I knew I had acral melanoma and began to understand what that really meant. I discovered this when reading a past issue of the American Academy of Cancer Research magazine.

Q: How did this make you feel?

AJ: When I was told about my diagnosis, I felt powerless, and as if a melanoma diagnosis did not warrant compassion. I sat and just processed that I had been told I had cancer—over the phone—by a nurse from a medical practice I had been visiting for a decade. I felt like a number, or a “to do” that had to be checked off a list. I was surprised that a nurse I gotten to know over a decade, did not ask if I was sitting down, or ask if I had any questions after the flat delivery of the news. I called my dad and told him the hardest thing I have ever said to him. (My sister had breast cancer diagnosed 6 months before and my mom died a couple of years before of pancreatic cancer). Dad gave some levity mixed with seriousness. He said that its location meant that I might lose a toe, but it was not my big toe, so I would still be able to run. It was an emotional icebreaker that I needed. I did not know what to do, or the next steps aside from figuring out which general surgeon the nurse suggested I should pick for my surgery. I felt at a loss as to how to navigate this new landscape, but figured I would get more information from the surgeon.

Q: What are some questions you had when you learned you had melanoma?

AJ: Multiple questions crossed my mind when I was diagnosed. My main question was if immunosuppressives played a part in the development of this cancer. If so, why was that not explained? If not, did it play a part in the development of cancer? Also, why did melanoma occur? Why did melanoma happen between the toes? Is this an unusual location? What is the next step, and the plan for care? The last question was the first answered; the others were not answered for over a year.

Q: How was your experience with your doctor surrounding your diagnosis and treatment options.

AJ: My experience with the diagnosis and presentation of information was lacking. While the general surgeon was quite compassionate and explained how much skin (about 1 cm) around the lesion would be removed, he did not explain that a skin graft was possible, nor did he explain anything about this type of melanoma. After the first meeting with the general surgeon, he sent me to the oncologist “for one visit” as he does with all his cancer patients. I am not sure why I was surprised to have an appointment with an oncologist, but it was another reality check of “you really do have cancer.”

The oncologist explained that I would be seen for 5 years on a strict schedule of every 3 months, then every 6 months. Again, I felt the care was lacking in detail and being specific to the patient. When I asked repeatedly about my immunosuppressive history, I was told that it did not impact the standard of care, that I just needed blood work and to visit every few months.

After 18 months [that included a change in oncologists at the local office, having an oncologist tell me I needed to check lymph nodes daily (extreme difference in care), and learning about melanoma specialists], I demanded a referral to the melanoma specialist in my state. I wish I had known of this office from the start; the compassion at that office, and the understanding of what immunosuppressives do to a body, made me feel I was in the right place.

I was not offered any options other than surgery with a choice to have a lymph node biopsy. I had a SLNB in order to know if the cancer had spread. The oncologist explained that surgery was my only treatment, aside from the 5 years of follow-up visits to oncology and dermatology. I felt seen and heard once I received care from a melanoma specialist (18 months into the care at a local “one size fits all” cancer clinic). I wish everyone was referred to a specialist ASAP.

In general, I felt passed around to different offices and met with confusion. The oncologist was unclear why I was in her office, as I had not yet had the wide lesion excision. This response made me feel like I was in the way, and doing things out of order when I was trying to do what I was told. The oncologist told me that I needed to see the dermatologist as well for my new care team. I was surprised that it is so difficult to gain an appointment at some dermatology offices-even with the words “melanoma or cancer”-some were quoting 6 months out. I was dissatisfied with feeling like another checkmark for the team at the first oncology office. I did not feel seen as a melanoma patient. I often wondered if that was the judgment, I feel from laypeople who blame patients for being exposed to the sun.

Q: What are aspects you were dissatisfied with regarding your clinical care?

AJ: I was dissatisfied that no one explained that the melanoma I had was different and rare, not the surgeon, and most definitely not the oncologist. I sent the dermatologist a photo of my lesion, and at my next visit, and all he mentioned was that he “never would have thought that was melanoma.” I was shocked to hear that admission from my dermatologist and wondered how many patients are overlooked.

I went into surgery expecting to be released with crutches, and instead was sent home with no walking aid and told to sit on the couch for a month with my foot elevated. Realistically, this is impossible. My spouse was also surprised that no walking aid was given at discharge.

No mention of staging was made at my follow-up appointments with the general surgeon. I had to ask the oncologist for the stage. I am not sure who should have told me, but the patient having to ask for this information should not be protocol. With my history of 20 years of immunosuppressive use, I repeatedly questioned the oncology team about extra checks for my body and was repeatedly told that having blood work and being seen in the office was the standard of care and that no longer being on that medicine meant it was no longer an issue.

Q: What would you like the Society for Melanoma Research to consider when performing research and developing new treatments?

AJ: I would like the Society for Melanoma Research to discover why this specific type of melanoma occurs in humans, why some of us develop acral melanoma (is it a genetic variant, or opportunity with a previous injury, some medications, some chemical exposure [farm/military/industry], or radiation exposure), how genes play a part in not only the risk of this rare melanoma but also how positive gene testing can impact treatment options for patients with acral melanoma. What treatments provide positive responses for those with advanced acral melanoma.

Helpful information regarding melanoma diagnosis, treatment, and prognosis can be found at cancer.org, mayoclinic.org, and skincancer.org among other sites. If you are interested in finding free screenings in your area, the American Academy of Dermatology Association, the Centers for Disease Control and Prevention, as well as various nonprofit organizations and universities often have free screening events and information on their websites.

These are some takeaways from our interviews

• Health inequalities persist in areas where people of color are most prominent and strategies to equalize information and therapy access need to be improved.

• Lack of knowledge from medical staff at some clinics/hospitals about melanoma prolongs the optimal treatment for the patient.

• Innovation and collaboration are key to coming up with better treatments for melanoma patients.

• Understanding the drivers of lesser studied melanoma subtypes such as acral melanoma and mucosal melanoma is paramount to provide patients with improved treatment options.

• Increasing the recruitment of minorities in clinical trials needs to be expanded.

DISCUSSION

The melanoma field has made great strides in basic and translational research, giving rise to better and more effective treatments for patients with advanced disease. The Society for Melanoma Research (SMR) was born more than 20 years ago after a meeting between Dr. Meenhard Herlyn, a research scientist, and Noreen O’Neill, a Philadelphia business executive, diagnosed with advanced melanoma. They shared a vision of bringing together clinicians, scientists, and patients with the goal of translating laboratory discoveries into effective treatments for melanoma. It is clear from these meaningful patient testimonies that early detection and a great medical team can make a significant difference in patient outcomes and experiences. Significant barriers to accessing excellent medical care are still a problem in the USA and in other countries. Here, we interviewed 5 melanoma survivors who shared with us their experiences of diagnosis and treatment for melanoma. Great medical teams who provided quick diagnoses, treatment options, and communicated well with patients made a huge impact on patient experience and outcome. Health inequities continue to be observed in communities where people of color are predominant. The lack of easily accessible information on melanoma subtypes such as acral melanoma prevents the early detection and treatment of the disease further impacting the quality of care and patient experience. Every cancer patient deserves to be attended by a medical team that is knowledgeable, respectful, and caring. Further efforts need to be made to reduce and eliminate health inequalities for all patient populations regardless of socioeconomic status, ethnicity/race, gender, sexual orientation, and geographic location. With this piece, we aim to raise awareness of the pressing issue of health inequalities and remind our research community that there is much left to do until we can put an end to this terrible disease.

The treatment of melanoma is based on the stage of the disease at diagnosis. In 2008, the standard of care was surgery, dacarbazine (a chemotherapy agent that was FDA approved in 1975), high-dose interleukin-2 (FDA approved in 1998 for metastatic melanoma), and interferon for patients who had their tumor (larger than 2 mm) resected with or without regional lymph node metastasis.

Patients often must determine how they will cover the cost of care that occurs during clinical trials. There are two types of costs during a clinical trial (1) patient care costs and (2) research costs. Patient care costs are associated with standard of treatment for cancer whether the patient is in a trial or not which can include, doctor fees, hospital stays, standard cancer treatments, treatments to improve cancer or treatment-associated side effects, lab tests, x-rays, and other imaging tests. The second type of cost, research costs, are related to participating in the trial and are often not covered by health insurance but may be covered by the trial’s sponsor and may include the study drug, lab tests performed purely for research purposes, added x-rays or imaging tests performed only for the trial. More information can be found on the National Cancer Institute website.

Acral melanoma (AM) is a subtype of melanoma that arises most commonly in the palms, soles, fingers, nails, and toes. AM can occur in anyone, but it is the most common melanoma subtype among people of African, Asian, and/or Hispanic descent.

DATA AVAILABILITY STATEMENT

Data sharing is not applicable to this article as no new data were created or analyzed in this study.