A few years ago, my wife was diagnosed with a rare form of melanoma, ocular melanoma. Because of this, I decided to get yearly skin checks with a dermatologist. During my very first visit, I had the doctor look at a suspicious freckle on my calf. He said it was nothing. The next year, I went again to a different dermatologist and had them look at the same freckle – still nothing. Then the third year—thanks to different jobs and changing health insurance—I went to another new dermatologist who looked at the freckle and said, “nah, it’s nothing. But do you want me to take it off just to make sure?” Better safe than sorry, right?
And it’s a good thing he did! A week later I got a call saying that it was melanoma and .9m deep. Because of its thickness, I had to have a sentinel node biopsy. This is where they remove the closest lymph node to the cancer to see if it holds any seeder cells and if a more widespread treatment would be necessary. Thankfully the lymph node was clear and only a localized removal of the surrounding area of my calf was required.
So now, I officially have a history of melanoma and I’m getting skin checks every three months to carefully monitor anything suspicious. During one of these checks, we found another, less suspicious freckle on my left arm. The doctor said its probably nothing but given the circumstances of the last freckle we decided to take it off anyways. A couple of days later I got a phone call, guess what? It’s melanoma. I went back into the office to remove the surrounding tissue and make sure everything was gone.
Near this latest spot was another freckle that my doctor advised we “keep our eyes on”. Nope, at this point I just want everything off. Looks a little funny? Take it off. I’m reminded of that scene in Goodfellas about borrowing money from a gangster. “Your house burnt down? F**k you, pay me! Your mother just died? F**k you, pay me!” The freckle has an unusual border? F**k you, cut it out. Funny coloring? F**k you, remove it!
But I am no Henry Hill, so at the time, I agreed to just watch it. I did this for a year and a half, but in the back of my mind was always thinking about the other freckles that were ‘nothing’. I said to yet another new dermatologist, “we’ve been watching this one, but I think I’d feel better if we just remove it.”
Now it’s just getting repetitious, they take it off…a few days pass…another phone call…another problem. This time it was a ‘severely atypical dysplastic nevus’. Which just means “we didn’t look at all the cells, but what we did see is ‘No Bueno’, it’s got to go”.
The moral of the story…
Speak up and advocate for yourself.
I can’t imagine where I’d be if I just took their word for it every time they said it was nothing. What if I hadn’t found a dermatologist that offered to take it off just in case? Would I now be fighting skin cancer that had spread throughout my body? Would it have landed on one of my organs so I would have needed to undergo chemo or radiation? Or would I still be living in the sweet spot of ignorance before I showed any clinical symptoms; all while the “melanomies” were gathering in numbers and strength for an all-out assault?
It’s easy to remove a suspicious spot and have it tested. The removal process doesn’t hurt, the recovery is simple, and the definitive answer is always better than a ‘it’s probably nothing’. If you know your ABCDE’s of melanoma—Asymmetrical Shape, Border, Color, Diameter, Evolution (or change)—use that info to advocate for yourself and have your concerns taken seriously. And when in doubt, have it removed.
Mercer’s (Darren’s Son) Story
My name is Mercer and I am 13 years old. I have two parents that have been diagnosed with melanoma. Yep, that’s two! When I was only seven, my mom found out that she had a rare form of melanoma called ocular melanoma (OM). At the time, I was very confused and was very scared that my mom would not be ok. We were constantly getting medicine and going to the doctors. But we were brave together and told pirate jokes and talked all about what OM was and how we would kick its butt together as a family. Eventually, she had a procedure that removed her eye and I was terrified. She came out eight hours later, half blind and my beautiful mom.
Our lives were finally getting back to normal until just about a year and a half ago, my dad was diagnosed with skin melanoma. And I was again, very nervous. He had to have a procedure to remove the melanoma from his leg and his arm twice, and it went really well. He had three melanomas within three months (kinda crazy, right?). Now both my parents look out for themselves to insure nothing else comes back. We all get our skin checked and eyes checked every year, we wear sunscreen every day and try to stay covered and still enjoy the great outdoors. Also, I advocate for melanoma in Washington DC to stop other kids and people from going through what me and my family had to go through. #BeBrave
I’ve had the privilege of advocating with Mercer and his family in DC for melanoma research and treatment funding. This family is brave in actionable ways! Being brave is also speaking up with providers about our risk and concerns. Thank you Reilly family for your story transparency.
Thank you for sharing your experience! As a new melanoma patient this is something I will remember. I just started one month ago with a biopsy and excision, and will be starting my 3 month checks. I appreciate your humor and BRAVE attitude and will keep that in mind as I go through this journey! Best wishes to your family.