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Melanoma #5

Those of you who know me, or have followed this blog, know that my husband and I have had recurring melanomas. I started it, with a melanoma (stage 1, .9mm) on my ankle in June, 2003. That followed with one on my shoulder (stage 1, .8 mm) in 2013.

My husband has Parkinson’s, and astonishing as it may sound, those with Parkinson’s are 4-7 times more likely to have melanoma. His first was on the back of his neck (stage 1, .2mm) in 2015. Another followed in his ear (stage 1, .2mm) in 2018. This year, it was on his face.

WARNING! GRAPHIC SURGICAL PHOTOS FOLLOW!!

I post these photos and these blogs because when I was first diagnosed, I obsessively looked at photos of melanomas on the internet. Turns out, it was a good thing I educated myself like that, because I found the one on my shoulder, and all three of my husband’s.  Well, I didn’t like the look of them, so flagged them for his annual dermatologist visit. It is in that spirit that I post the following pictures of Al’s most recent diagnosis and surgery, because melanoma is a real thing. It is deadly, and you (every one of you) ought to have a thorough, annual skin check by a dermatologist. Just in case. 

jan2019

Melanoma next to right eye

This was the melanoma as of January, 2019. I had seen it, and photographed it the previous year, because I didn’t like the look of it. (Just so I don’t run to the dermatologist every other day, when I see something weird, I photograph it and put it on my calendar to photograph again six weeks later, for comparison. Most things have resolved by then. This got darker and a little larger.) The dermatologist at the VA initially said it was nothing. A year later, I insisted he look at it again, and he scraped it for a biopsy. A scrape should never be done on a suspected melanoma. A punch biopsy is what’s called for, so just in case it is a melanoma, we can get an accurate depth of the tumor. Still, he scraped, so we have no depth. Still, melanoma.

Wisely, the VA declined to do the surgery so close to his eye, so he sent us to a fantastic oncology dermatologist/surgeon. She held a black light to the lesion, and this is the area that glowed.

Eye1

The melanoma, including in-situ

Then she mapped out a 5mm margin. It looks all puffy in the photo below because she had already injected the anesthetic before I snapped the picture. (Interesting detail: When I asked her if it was all right that I took photos, and told her why, she said that most people do.)

Eye2

Surgical lines with 5 mm margins

Then she cut.

She was doing what they call “Slow MOHS.” In normal MOHS surgery (for basal cell and squamous cell carcinomas) they cut with a tiny margin, then examine it right in the office to make sure they got it all. If the margins aren’t clear, they cut a little more, put a bandage on it and have the patient return to the waiting room while they test to see if they got it all this time. When they have clear margins, they stitch it up and send the patient on their way. Melanoma is a little different and they don’t have the capacity to test it in the office. They have to send it out to a pathologist.

Eye4

Melanoma surgery

So they took the skin and sent it to pathology, put a bandage on his open wound and sent him home.

Fortunately, the pathologist said she got clean margins, so we went back the next day to be stitched up. I have to say, she was a master at it.

Eye5

After melanoma surgery

This is how he looked when we left there, but bandaged, of course. A week later, the stitches came out and they put tape on it, which they said would fall off in a week to ten days. Right on schedule the tape fell off in the shower, and this is how it looks, 18 days after surgery.

Eye6

18 days after melanoma surgery

Know your ABCDEs of melanoma:

A: Asymmetric. One half does not match the other half.

B: Border. Melanoma is unorganized. It does not grow in a uniform way. Borders have a “notched” appearance.

C: Color. Al’s melanoma had no particular color, but many times moles turn bad, and they can look pretty colorful. Al’s lesion (not a mole) just got darker. (Interesting point: most people don’t get new moles after they’re 30 years old.  In fact, most moles begin to regress as people get older. If you are middle aged or older and suddenly have a new mole, have it checked.)

D: Diameter. Any mole or suspicious lesion that is larger than a pencil eraser needs to be looked at.

E. Evolution. Melanoma is cancer. Cancer grows, changes. That’s why I take photographs for comparison. I would add to this Elevation. My first melanoma was a standard flat mole that grew tall.

Wear sunscreen and long sleeves in the sun.

Be safe out there. 

 

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About Melanoma

It occurs to me that this could be a teaching moment about melanoma.

My first melanoma began as a large freckle on my left ankle, the size of a dime, with a small flat black mole on the bottom edge of it. The pair had been there since I was a teenaged sun worshipper in the Hawaiian Islands, slathering on baby oil to gently sauté my skin to a golden brown in the tropical sun.

Fast forward thirty-some years to a Jazzercise class in Eugene, Oregon. At the first spring class, I put away my leggings and wore shorts. At the end of class, we were stretching, and I had my face down by my ankle for a close view. The freckle was puffed and pink, now the size of a quarter, the flat black mole was raised up tall, and at the top of the freckle was a little pink nodule with a vein clearly visible in it.

Not to my liking.

The next morning, the freckle was as brown and flat as ever, but the mole was still tall, and the little nodule still there.  When I scratched lightly on the freckle, it puffed up pink.

Since I’m a writer, research is my middle name, and my skin full of moles (I’ve had over a dozen small squamous cell carcinomas cut or frozen off my chest, face and forearms over the years), I went to the internet to look at photos of melanoma. (If you want to see some real nightmare stuff, Google melanoma photos. Good lord!) Mine didn’t look anything like that. But, I reasoned, could it eventually.

Yes.

I went to my family doctor who said he was certain it was nothing, but biopsied not only the tall black mole, but the little nodule. In doing so, he cut right through the freckle. The mole came back malignant melanoma, Breslow’s .9mm, Clark’s level IV. The nodule came back melanoma insitu. No clear margins.

I had a Wide Local Excision with a 3” in diameter skin graft and a sentinel node biopsy. This is where they inject blue dye into the tumor to see what lymph basins it will drain to. Mildly interesting. Made me pee blue for two days.

The freckle was all melanoma. They took out two lymph nodes, both negative for tumor. “What’s next?” I ask.

“If you start coughing blood or have a seizure, give us a call,” was the response from the surgeon.

“Really? No skin checks? No admonition to stay out of the sun?”

“That ship has sailed,” he said.

“Am I cured?”

“We only consider a melanoma patient to be cured of melanoma when they die of something else.” (Note to self: Keep a journal of jarring things that doctors say.)

Well, thanks to the internet, the Melanoma Patients’ Information Page (www.melanoma.org), and a lot more research, I am far more knowledgeable about melanoma than either my general physician or that surgeon. I have taken it upon myself to stay abreast of treatments and my own body. Eighteen months after my WLE, I found an oncologist and argued my way into a brain MRI and a body CT scan, all with negative results. He told me that from here on out, call if I had any symptoms (like what? A seizure or coughing blood?), but it wouldn’t matter if it happened in June or in November, by that time I would be Stage IV and quality of life, blah blah blah.  Meantime, he reiterated that they caught my tumor early, and my chances were good.

Amazing.

Fast forward again, 9 years later. The cloud of a recurrence or a metastasis has slowly dissolved over the years. I was in the clear.

But wait. What’s that weird mole on my shoulder? Has it always looked like that?

I’ve learned over the years that if I run to the dermatologist every time something weird pops up on my skin, I’d be going once a week. (One dermatologist told me that I had ruined my skin in Hawaii and skin cancers would be popping up on me like mushrooms some day.) So I took a photo of this mole and wrote on my calendar to check it again in forty days. I read somewhere once that nodular melanoma doubled in size every forty days.

After forty days, I took another picture and compared them.

And another.

And another. By now, I could see a significant difference. I had it biopsied, as melanoma is a cancer that becomes lethal in increments of tenths of a millimeter.

Sure enough. Melanoma. Dammit. .8 mm. The storm clouds that had just dissipated came roaring back.

Another wide local excision. This surgeon looked over my moles on my arm, the back of my arm and my back and said: “You are a melanoma waiting to happen, aren’t you?” (I guess I have made a memory journal of jarring things that doctors say.)

After the first melanoma, my chances of getting a second one were 8% higher than the normal population. After the second, my chances of getting a third zoom to 33% higher. Now I’m hyper vigilant.

And I need you to be, too.

First: if you have moles, know them. Be familiar with them. Notice any changes in them, and if you find one that’s crusty or bleeding, get thee to a dermatologist.

Secondly: Know the A, B, C, D, E signs of melanoma.

  • A – Asymmetrical. Most moles are symmetrical. Melanoma pushes a mole out of its normal boundaries.
  • B – Borders. Cancer is not organized, so it grows haphazardly as the immune system is trying to suppress it, resulting in notched borders.
  • C – Color. Melanoma can be many colors, including amelanotic, meaning no color at all (skin color). Blue, red, pink, brown, black, pale… check into it.
  • D – Diameter. If you have a mole bigger in diameter than a pencil eraser, it has potential. Be aware.
  • E – Evolving. Anything suspicious that changes.

Melanoma kills. Don’t be afraid, be aware. Get skin checks. Wear sunscreen. Wear a hat.

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