It’s More Than Just Skin Cancer
How a melanoma diagnosis changes your life
It had been three years since my first annual skin check and mole biopsies when I opened my most recent test results and read, “The lesion is severely dysplastic and approaches melanoma.” I closed my phone and sat confused.
During my first skin check, the biopsied moles came back as atypical, but benign. The lab results said they were at higher risk of becoming melanoma, and the doctor told me to wear more sunscreen so I did.
Nowhere did these lab results say “benign.”
That’s because “benign” wasn’t applicable here, the final test results said I had cancer.
You Have Melanoma
In September 2023 I was diagnosed, for the first time, with melanoma. I had both Stage 0 Melanoma on my back and Stage 1 Melanoma on my neck.
Honestly, I didn’t understand what this meant. Sure I had cancer, but it was just skin cancer.
I wasn’t going to die and all they had to do was cut it out of me. Every conversation I had about melanoma, outside the doctor’s office, left me feeling like breaking my arm would have a more drastic and lasting impact on my life.
Boy was I wrong.
I didn’t know that melanoma is the most dangerous form of skin cancer.
I didn’t know that if not caught early, melanoma can quickly spread to other parts of the body including organs, bones, the brain, and the spine. Outside of the US, they have found melanoma can move from Stage 0 to Stage IV in as little as six weeks.
I didn’t know that in 2023 the Melanoma Research Alliance estimated that 7,990 Americans would die from melanoma, approximately 2,570 of which would be women.
I didn’t know that missing a skin check could cost me my life or that a skin check could both save and forever alter my life.
October came to an end with me in a hospital bed, under the knife, leaving with gruesome stitches just in time for Halloween. It came with the rude awakening that it was more than “just cutting it out.”
I was unable to turn or lift my head for three weeks.
I could only open my mouth so wide and swallow soft foods, making eating both difficult and painful.
I couldn’t lift or carry anything, including the cat, a carton of milk, or a basket of laundry.
I was rendered useless for weeks, unable to help with anything around the house, unable to work out, and unable to drive.
Finally, just over five weeks later, I was cleared to return to being an active participant in life.
My next skin check was three months after the initial diagnosis, falling just one month after my surgery. During that skin check they found Stage 0 Melanoma on my thigh and before Christmas, I was under the knife once again.
In a matter of three months, I had melanoma removed three times.
While the risk for a survivor to get melanoma again is higher than for the general population, the National Institutes of Health (NIH) also reported the risk of another diagnosis is only 5% over a 10-year time frame and only 0.38% risk within the first year of diagnosis.
Melanoma is reported to be the third most dangerous cancer among individuals ages 25 to 39 in the US but is still most commonly diagnosed in individuals 66 years or older.
Melanoma isn’t just skin cancer, not for me. Melanoma could be my life-ender.
I was 34 years old when I was first told I had melanoma and before my 35th birthday I had been cut open, cells cut out, and body parts stitched back together four times.
Melanoma Doesn’t Discriminate
The amount of time spent in UV rays has a significant impact on the risk of developing melanoma, but it isn’t the only factor at play. Melanoma is a diagnosis anyone can receive, melanoma does not discriminate based on age, gender, or skin type.
However, the American Cancer Society and others have reported that skin pigmentation does impact overall risk. It is reported that 33% of White people are at risk of developing melanoma vs 0.5% of Hispanic people and 0.1% of Black people.
Familial history also impacts the risk of developing melanoma. The greater the number of family members and the diagnosis, the greater the risk.
The National Cancer Institute reviewed various studies and found that the lifetime risk of developing melanoma rose to 14% for individuals who have two or more family members diagnosed with melanoma (once) before the age of 30.
All of these factors may contribute to a melanoma diagnosis, a mixture of factors, or even just one factor could result in a melanoma diagnosis.
A Life Sentence
Melanoma is more than just skin cancer, it forever changes your life.
The NIH reported that melanoma survivors have about a nine times increased risk of developing future melanoma compared to the general population and that the risk remains elevated for more than 20 years after the initial melanoma diagnosis.
After my first melanoma diagnosis, I knew that my life would now include quarterly skin checks and a near-guaranteed biopsy each time. But it was when winter turned into spring that the reality of having had and survived melanoma came crashing down on me.
While some cancers are completely out of the patient’s control, melanoma isn’t. Melanoma is one of the few cancers we know the cause of and we know how to prevent it.
Because melanoma generally develops from overexposure to UV radiation limiting time in those UV rays is key. But UV rays can be absorbed into your skin through everyday activities. It may be from partaking in outdoor activities (playing, tanning, walking, etc.), commuting, or using tanning beds.
Many think tanning beds keep you safe from the dangers of the sun, but that’s a fallacy. In 2010 NHI study found that individuals who use tanning beds regularly before the age of 35 have a 75% higher risk of melanoma.
Staying safe seems simple enough — less UV rays and more protection.
But it’s far from simple when you are solar-powered.
When being outside recharges your soul.
When the outdoors calms you when the world feels overwhelming.
When you count down the days until it is warm enough to read in the shade with your feet in the pool.
When you take time off work specifically to make the two-mile walk in the warmth of the sun for a Slurpee from 7–11.
It’s far from simple when you lead a troop of Scouts who also love the outdoors.
When there are hikes, camping trips, waterpark visits, and so many other activities you have to navigate balancing both staying safe and not letting them down.
This year the National Cancer Institute estimates there will be 100,640 new cases of melanoma, making up 5% of all new cancer cases. They also estimate that 8,290 people will die from melanoma this year, and according to the Melanoma Research Alliance, one person dies from melanoma every hour of every day.
I don’t want to be part of this year’s statistics, which has meant the solar-powered life I have had needed to radically change.
Doctor’s orders included no more than 30 minutes in the sun a day, and a requirement to be as covered up as possible — long sleeves, pants, hat, sunglasses, etc. while in the sun.
That means my self-care sitting outside reading during the day had to come to an end. My hours-long walks around the neighborhood, where I wandered and explored, are over. My activities and actions on days I have Scouts are carefully calculated to ensure I am saving my sun time for them.
Each morning I put on an SPF lotion — on my face, neck, hands, arms, legs, and feet — and put on an SPF lip oil. I do this every day, regardless of the weather, time of year, or my plans to leave the house.
If I am leaving the house to do more than check the mailbox, I put on sunscreen — on my face, ears, neck, and all of my exposed skin. It doesn’t matter what the cloud coverage is or what time of year it is.
This is my new normal. SPF and UPF protective things are my new best friends.
Every day when I get out of the shower I look in the mirror and check my moles. I look for changes and abnormalities. The typical ABCDEs review and attempt to identify any ugly duckling moles, the moles that look different.
For most both checks aren’t terribly hard. People typically have one type of mole on their body, their moles are uniform and follow the same “style.” My moles have no uniformity, they are all different from one another in shape, size, color, and texture. They are all ugly ducklings.
Most days I look at my reflection and tremble in fear of what is to come.
Melanoma hasn’t only wreaked havoc on my body, it hasn’t only upended my way of life. It hasn’t only forced new habits, clothing, and products on me. Melanoma has also landed a devastating blow to my mental health.
It’s rendered me all but useless too many times, taking from me my ability to do simple tasks — like putting away the dishes — and to stay physically active.
It’s caused my body to become weak, my muscle mass to decrease, and the parts of my body I’ve worked so hard to both change and accept to revert to a form that leaves me hurt by my reflection.
It’s taken away my source of energy, eliminated my favorite self-care activity, and caused me to miss out on too many activities, both indoors and out.
It’s left me struggling to not hate my body because I do know that melanoma is happening to it too. It has not chosen this.
But, I’ve spent endless hours crying because melanoma has made it feel like my body hates me, that my body has turned against me.
Endless hours crying because melanoma has made it feel like my body is killing me when I finally don’t want to die.
Melanoma is as much a cancer as lung cancer is, as breast cancer is, as colon cancer is.
Cancer is cancer.
Melanoma is just as serious, scary, and detrimental.
Prevention is imperative, not only for me but for you too.
- If you haven’t had a skin check yet this year, schedule it — mine may have saved my life
- Put on sunscreen or an SPF lotion every morning
- Wear sunscreen when you’ll be spending time in the sun
- Cover up! There are tons of great UPF clothing options, swimsuits, and more out there
- Plan your time in the sun and avoid doing activities during peak hours
- Skip the tanning bed and cancel that membership
- Parents, keep those kids covered in the sun and lathered in sunscreen every day — establish good habits now
I promise you, prevention now is a lot easier and cheaper than having melanoma. Then the cost of having an oncologist (or two), having surgery, or having PET scans done.
As Katie Ostrovsky of My Melanoma World put it on Instagram, pale is the new tan.
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