Melanoma Is More Than Just Skin Cancer

“Wear sunscreen, limit your sun exposure, and absolutely do not use a tanning booth if you want to mitigate your risk of Melanoma.”  

This is the familiar advice I have heeded with great diligence since my father was diagnosed with and passed away from Melanoma in 2008. May is Melanoma Awareness Month and while emphasizing this advice, I share today a new understanding of Melanoma—one that is deeper than just our skin.

I am now a caregiver to my 33-year-old husband with a rare but second most common form of Melanoma. Yes, that’s right, there is more than one kind of melanoma, for example, Ocular or Uveal Melanoma (OM) which accounts for 2-5% of all melanoma cases. OM is altogether different from cutaneous melanoma—the form of skin cancer most people think of when they hear melanoma. OM is rare and only affects 5-6 people out of a million across the globe annually according to rarediseases.org. If this is news to you, you’re in good company, when we learned that the blind spots and changes to my husband’s vision were not just a bad poke from our rambunctious, one-year-old, we were more than crushed.  Then, to learn that it was luck of the draw, not necessarily linked to the sun, and there were minimal ways to prevent it, was even more perplexing. There isn’t any advice that can be given to avoid this disease that is all too aggressive and elusive. Sometimes being runner up or entering into a “small group” is revered, but it really is scary when talking about cancers. With such a small prevalence, there is a lot to learn about what causes OM and why there is a 50% metastasis rate. Ocular Melanoma is aggressive cancer and our personal experience has truly demonstrated that by the speed at which doctors began cancer treatment.

On a sunny Saturday in April 2016, my husband noticed a change to his vision, and as a “hands-on” father he assumed he got bumped a little too hard. When the pressure and vision changes didn’t improve, he drove to the emergency room at Wills Eye Hospital in Philadelphia. With little information, they mentioned a mass that had detached his retina and they set him up to see a renowned doctor that Monday. We arrived with no expectations and after a very long, 10-hour day, we left with the diagnosis of OM, and surgery was set up for that Thursday. Within a week, we went from being “blissfully” unaware of the beast to 3 days into the 7-day brachytherapy treatment (a treatment that consists of radioactive beads on a tiny round metal plate that was sewed behind my husband’s eye to kill the tumor.)  I don’t exaggerate with the speed at which we were thrust full force into this cancer, and the shotgun learning that had to take place. We left with more questions than answers, not fully grasping the situation. Looking back, I am proud that we learned what we did and jumped on every chance to be proactive with his diagnosis. Within the first few months, he was biopsied, we learned everything there could be about cancer,  learning the risks of it, fighting with insurance to cover repeat scans and laser treatments, and joining a clinical trial for adjuvant therapy.  There was emptiness and fear of the unknown at every turn that only grace and time would help.

Five years into this journey we now have a clearer focus, a lens of clarity, and an appreciation for the extra family time we’ve been given during this pandemic. Looking at the positive side, we know so much more now about how melanoma is a cancer of pigmented cells that do not have to be on your skin. We know that we have to be our own advocates and researchers. We know that we have to put trust and accept help from others to make it by. We know how strong we are when we are together, and give ourselves the patience to still live our life how we envisioned. We know how fortunate we are in this battle. We know that we are more than statistics.  

I wish someone told us early on to find our “hive,” the people who have been there, who are there with you, or who will root for you no matter the situation. Cancer is lonely. I don’t think that’s truly understood.  It is isolating, strange, hard, and when you have others who can relate, those feelings lessen. My husband’s cancer was classed as high risk for metastasis and did spread to his liver only 18 months after that fateful day in April when we first learned melanoma was more than just skin cancer. He has been followed closely by the leading doctors in Metastatic Ocular Melanoma at Jefferson University in Philadelphia, our hometown. It is not lost on us that many people have the added challenge of having to travel a great distance to specialists. We happen to be within driving distance to ours, and we are ever so grateful. We have learned how important it is to have a team that grasps the depth of your cancer. The way my husband has responded to his recommended palliative treatments has also been outstanding, and allows us to fully release our trust in the team's guidance. I want to say that this journey is easier when you have that feeling.

My husband is a melanoma stage IV cancer survivor rocking for over 3.5 years and counting. We will keep “jamming on” with our 3 children and our hive. Although it may seem cliché, the best advice we have heard and now believe is to keep living! Lastly, don’t just #getnaked, also #getdilated with an ophthalmologist this Melanoma Awareness Month.

Photo courtesy of the author.