Except for Melanoma, most people think about skin cancer like it’s no big deal…
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The “Easy” Cancer
Except for Melanoma, most people think about skin cancer like it’s no big deal.
Of course, these are people who have never had skin cancer… or at least who have never experienced skin cancer in the way that I’m about to describe in this series of articles.
I’m talking because I know: Squamous Cell Skin Cancer twice, Sebaceous Carcinoma a dozen times (and dozens more Sebaceous Adenomas), and one pre-cancerous Melanoma to boot.
I’m what they call at the dermatology clinic a “frequent flyer”. If I live long enough, I suspect there are plenty more on the way.
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An Itch on My Nose
It all started with a tiny bump on my nose that just wouldn’t stop itching.
And so I scratched it. And it bled. A kind of bleeding that gushed way too much and took forever to stop. Don’t freak out, I told myself. Maybe I just scratched too hard.
But I woke up the next morning to a white pillowcase covered in huge blotches of dried blood. My whole body tightened. And one word came to mind: Cancer. It had to be.
I scheduled a dermatology appointment.
Six weeks out was the best they could do. In the meantime, I resisted picking at it as best I could and covered it with a band aid so it didn’t bleed all over the place.
Six weeks. No kidding.
Six weeks to ruminate about all the horrible possibilities.
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Biopsy Day
Dermatologist appointment day… the typical annoying paperwork… the usual wait… leading to a sterile exam room full of tracks and syringes…
… wait some more… knock at the door… “I’m doctor so and so”… a quick visual with magnifying glass… three needle sticks to the nose (ouch)… quickly numbed… punch biopsy… sutured closed… bandage applied… all done in five minutes.
Doctor casually mentions possible Basal Cell or Squamous Cell Carcinoma…
Wound care instructions given…
Suture removal scheduled ten days out…
One to two weeks for the pathology report to arrive…
If benign, will get a postcard in the mail.
If cancer, will get a call from the doctor.
More days and hours to ruminate about the best and worst that can happen.
How many days and hours I’ll have to wait I do not know.
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Wasted Worry
You don’t think of all the questions you should have asked until after you’ve left the doctor’s office…
And so, you go home and google “basal cell” and “squamous cell carcinoma” and you read what Wikipedia, WebMD, and the Mayo Clinic have to say… with the hope of putting yourself at ease even if it is cancer… and what do you find? A bunch of medical jargon and horrifying images that that are no help at all… and leave you feeling even more anxious than you were before.
The questions are so obvious…
- If it is cancer, was it discovered early?
- What does “early” even mean?
- Has the cancer possibly already spread to my lymph nodes?
- Can I die from this?
- Will I die from this?
- How curable is a case like mine?
- Will I lose my nose?
- Will I be scary to children after I recover?
- And I realize I don’t know a single answer to any of the above.
If I was the doctor–knowing what I know now–I would send the message, totally unsolicited, and loud and clear. “Frank, you presented not just early, but very early… well done. Even if it is cancer, you are not going to die from it. You are not going to lose your nose. You are not going to be scary to children after you recover. It’s going to suck for a couple of weeks while we get you fixed up, but you are going to be ok.”
Why did the doctor not tell me these things in advance?
Why did I have to endure so many days and weeks of unnecessary anxiety, nausea and insomnia worrying about what really did turn out to be my “easy” cancer?
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The Waiting
They said it’d take one to two weeks for the pathology report to arrive…
If benign, I’d get a postcard in the mail.
If cancerous, I’d get a call from the doctor.
And so, I wait…
And with each passing day, a trip to the mailbox becomes an ever more stressful ordeal… heart beats faster as I see the mailman arrive… then as I open that squeaky mailbox door… with the thin hope that a simple post card is waiting inside.
And with each passing day, my ringtone feels more and more like the jolt from a taser. Every time the phone rings during business hours, my heart skips a beat. I can feel my anxiety rise as 8 am approaches and feel it subside as 6pm comes and goes. But the reprieve is only partial… and only temporary.
The days come and go.
Nothing but junk mail and medical bills… and just the usual smattering of phone calls, none from the doctor.
All the while, I imagine a chunk of my nose being sliced, stained, and mounted on a microscope slide in some sterile laboratory.
Insomnia and nausea ensue.
Anxiety grips me head to toe.
Just talking about it years later makes my palms sweat.
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The Wait is Over
Ten agonizing days pass. The postcard never came…
But the phone call did. It was a Friday, just before lunchtime. Funny how you remember such things.
Phone rings. Heart jumps. Caller ID reads skin doctor’s name. Deep breath. Exhale. And brace myself.
“Hi, Mister Peter. This is Doctor so and so. Unfortunately…” and then something about squamous cell carcinoma. My heart sank and stomach churned.
Then something about it being “minimally invasive” and tending to be “readily treatable”.
For a moment, a deep sense of relief. Until they continued: “Although these things can be aggressive”.
And my knees turned to rubber.
Given the name of a surgeon to call.
Have a nice weekend.
At least I know what kind of skin cancer I have.
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Meet the Surgeon
Two more anxiety-filled weeks pass until I met with a surgeon who specialized in something called Mohs Surgery…
I’d never heard of it before.
Named after its original developer Doctor Frederic Mohs, it’s the meticulous process of progressively removing and evaluating thin layers of cancerous skin at the cellular level until only cancer-free tissue remains.
Anyway, after greeting each other, the first thing out of the surgeon’s mouth was “You’re a bit young to be here, aren’t you?”
“F&ck me!” I thought to myself. How did the doctor think that made me feel?
Anyway, after a quick examination of my nose with a magnifying glass, he proceeds to palpate my jaw and neck.
“Holy f&cking Sh$t!” Now my stress is really going through the roof, absolutely convinced that the cancer has already spread to my lymph nodes. At the very least.
I blurted out: “Doc, is this going to kill me? Am I going to lose my nose? Am I going to be scary to children?”
And then he said something totally unexpected… that he was 99% sure that the cancer was minimally invasive, that it had not metastasized, that it was not life-threatening, that I would not lose my nose, and that I would not be scary to children.
“WTF?!” Right then and there, I broke down in tears of exhaustion.
The medical assistant who was present seemed baffled by my tears… as if I was overreacting and being a big crybaby.
At the least the doctor appeared to understand my response… and put his hand firmly and reassuringly on my shoulder.
But why did it take weeks of wasted worry on my part to get to this point?
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Mohs Surgery Scheduled
Mohs surgery scheduled three months out…
Three months. No kidding.
Despite the reassuring words of my surgeon, three more months where I could not help but wonder: How fast is my cancer growing and spreading in the meantime?
Three more months to realize that he said there’s a 99% chance that everything will be fine. 99%. Pretty good odds. But not 100%.
And then I wondered if he knew it would be three more months until I saw him again–three full months for things to change. I never asked the surgeon about the risk incurred by such a wait time because I never expected it would take that long to find a slot on his schedule. And now my head is filled with a fresh batch of dark thoughts, which includes a very simple question: Would you choose to play a game where you had a 1 in a 100 chance of dying a slow, painful, disfiguring death? And a full quarter of a year to think about it?
And that’s not all…
In the very same timeframe that I am dealing with this “easy” cancer, I’d already had half of my colon removed due to colon cancer. I was already under surveillance for Lynch Syndrome. I was already bracing myself for a recurrence of colon cancer or for another GI or GU system cancer to be discovered. I already had a sebaceous carcinoma excised from my chest with the expectation that the next lesion is likely to pop up any day.
Anxiety on top of anxiety on top of anxiety.
And all to what end, I am compelled to ask.
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Mohs Surgery Day
I can’t possibly do justice to just how unpleasant and stressful Mohs surgery is in just a few words, but here goes nothing…
Aside: Because the cancer was located on the petri dish known as my nose, I needed to start an oral antibiotic beforehand (Yes, you can add wound infection to your list of things to worry about)
Surgery Day. Imagine a medium-sized waiting room, chairs arranged around three of the walls. Along the fourth wall there’s a door and a table with coffee, tea, orange juice, and some snacks.
One by one, each of a dozen skin cancer patients enters. We greet each other and exchange some small talk about the January weather or something. Nobody dares to bring up the topic du jour–skin cancer and Mohs surgery.
Then it begins. A smiling medical assistant (MA) pops her head in, calls a name, and off that person goes to start their Mohs surgery process. This repeats every ten minutes or so until every name has been called. You never know which name will be called in advance, which adds some more anxiety that you did not plan for.
It took about an hour and a half for my name to be called for the first time: “Mister Peter?” Short walk to a typical-looking medical exam room. Five or six needle sticks to the nose. Only the first two hurt. Then your nose just feels like this lifeless blob in the middle of your face. No time wasted. Patch of skin excised. No sense of how deep or wide. Wound lightly dressed. Biopsy sent to the lab. Me back to the waiting room. (By the way, I really appreciated the professional, calming bedside manner of my surgeon)
After everyone has had their turn and returned to the waiting room, everybody’s got a bandage somewhere—typically in an awkward, prominent, and sensitive place on their head or face. Now there’s no secret about where everyone has skin cancer, although what kind still remains confidential.
The process continues. A name gets called and off they go. Each precious soul, like me, hoping it’s their last time.
Each cycle takes somewhere between one and half and two hours. That’s a lot of time to think about what’s happening–a lot of time to notice things like who does not return to the waiting area, to notice that the sequence of names called has changed from the previous cycle, and to wonder what all that means. And so again, you have that extra tinge of anxiety because you still don’t know when your name might be called.
I also notice that I’m the youngest person there. All the other patients seem to be at least a generation if not two generations older than me. And then I wonder if this is what my future looks like for decades to come. Is this my first trip on my way to becoming a “frequent flier”?
Another anxiety-filled two hours passes: “Mister Peter?”. Two hours must be a good thing, right? More needle sticks. More skin removed. You still don’t know how much.
As each cycle came and went, a patient here and there picks up their belongings and heads home, apparently cured. Naturally we all congratulate them and wish them well. There is no hint of jealousy. We are genuinely happy for them and take their success as a sign of hope for the rest of us.
The cycles continue. Catered lunch arrives somewhere along the way. Name gets called. Heart pounds a little faster each time–hoping to be told your cancer is gone, but bracing to be told they (and you) still have work to do.
Long painful story short, my name was called six times that day. By the end, it had already been about ten hours and it was down to just me and one other patient. Mercifully, the sixth time I entered the exam room, the MA whispers “Your cancer is gone, Mister Peter.”
Relief for sure, but not party time.
Having survived one of the longest and hardest days of my life, I’m still not done, because now I have an open wound on my nose that needs fixed the very next day.
Stay. Out. Of. The. Sun.
Mohs Reconstruction Day
Having survived a ten-hour ordeal on my Mohs surgery day, I’m still not done, because I still have an open wound on my nose…
*** Warning: Disturbing Image Below ***
The standard practice is to return the very next day (while the wound is fresh) for what is called “reconstruction”, which in my case sounds a lot worse than it really was.
Anyway, I had three options (all clearly explained by my most competent surgeon):
- Option #1. Do nothing to seal the wound (Pros: no further surgery required. Cons: leaves a divot in your nose and has the highest probability of recurrence)
- Option #2. Cover wound with a flap of nearby skin (Pros: the best chance of healing properly and a good option cosmetically. Cons: more surgery required, more trauma to the nose)
- Option #3. Do a graft using skin from behind the ear (Pros: cosmetically a good option, no further trauma to your nose. Cons: two surgery sites, slightly higher risk of graft failure)
I chose option #2 because it would look okay and have the highest chance of healing properly and permanently.
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Reconstruction Day
More needlesticks to the nose. Only the first one hurts. More surgery to prep the wound and create the flap, but no big deal compared to the epic ordeal the day before.
Another two weeks with sutures in your nose. Keep the wound clean. Some anxiety still about infection or the graft failing. As the days go by, my face turned black and blue in places I didn’t expect, but everything eventually healed up just fine. I am happy I chose this reconstruction option. A decade later and counting, my nose looks ok and the cancer has not recurred.
But I want to leave you with a photograph taken just after the dressing was removed…
I want you to remember this picture because I don’t want you to go through this… keeping in mind that this really was my “easy” cancer.
Stay. Out. Of. The. Sun!
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Looking Back
Only in retrospect did I realize that my skin cancer case was presented early and was readily treatable…
Only in retrospect, did I realize that this really was my easy cancer–because it wasn’t going to kill me or make me scary to children.
Only in retrospect, did I realize that I wasted four months of anxiety, nausea, and insomnia.
But I did not know any of these things at the time.
How could I know? When none of the experts told me what to expect.
I understand that doctors can’t make promises, but they can certainly refrain from off-hand remarks that might send your stress level through the roof.
I also understand, because of our litigious society, that doctors need to be defensive, but they can certainly be sensitive to the stress you are enduring and can share something to help you manage your expectations and put things into perspective.
Despite their many years of experience, the medical professionals in my dermatology clinic apparently have no clue what it feels like to spend weeks preparing oneself to die a slow, painful, disfiguring death.
Despite their many years of experience, the medical professionals in my dermatology clinic told me nothing about what to expect during the healing process.
Instead, my imagination ran wild and sickened me for months… both before and after my surgery.
So much unnecessary trauma that could have been easily avoided… if only their life-saving services were delivered with a wee bit of empathy.
Don’t they realize that a patient’s emotional well-being is also part of their healthcare?
Frank’s Message to Other Patients:
(1) Early detection will (not can)… WILL save your life… and will also save you from disability and disfigurement.
(2) The treatment process may be extremely stressful and traumatizing, but you are going to get through it and be ok.
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Heed these Words
Did you know that there’s a wide open secret on what causes most skin cancers?
It’s called the Sun. More specifically, the sun’s ultraviolet radiation.
So, repeat after me…
The sun’s ultraviolet rays are CARCINOGENIC!
The sun’s ultraviolet rays are CARCINOGENIC!!!
The sun’s ultraviolet rays are CARCINOGENIC!!!!!
The sun’s ultraviolet rays are CARCINOGENIC!!!!!!!
The sun’s ultraviolet rays are CARCINOGENIC!!!!!!!!!
Protect yourself from them.
Stay out of the Sun.
Wear long sleeves.
Wear a wide brim hat.
Wear sunscreen.
Wear sunglasses.
Wear gloves when you drive.
Your beautiful and healthy skin will thank you years from now.
Please indulge me now as I vent and direct a deadly serious question to the entire dermatology profession: Why the F are you so eminently silent on this matter? (We all know the answer, of course).
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Frank’s Cancer Story continues… My Colon Cancer
Discover more from Frank J. Peter
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