Life With Squamous Cell Carcinoma

The feeling when I head to the dermatologist is usually a level below apprehension but above mere curiosity. What will she find this time? There’s always something, even if it’s what she sometimes calls a “little guy” that she needs to zap. The guys like to hang out in groups on my hands and arms – the areas with the most sun damage. They could be squamous cell carcinomas, actinic keratoses, yucky warts, or generic little raised red dots from dry skin or irritation. Dealing with skin cancer recurrence Skin cancer is a drip, drip, drip. It didn’t come on with a bang like when I got leukemia in 2003. It started happening in small encroachments after I got a stem cell transplant (also called a bone marrow transplant). It is likely that I will keep getting skin cancers. As I stated previously, they’re a product of past sun exposure, long-term prednisone use, and the increased risk associated with allogenic stem cell transplants (those that use cells from a donor or cord blood.) I had one basal cell, in my ear of all places. Countless others have been squamous cell carcinomas in situ – on the skin. My “squamous cell radar” can usually detect their beginnings in little areas of flakey skin. When I got my first one, I was more nervous, since it was new. I was alarmed when I heard “skin cancer,” but the “in situ” part calmed me down. I asked her to repeat that it was on the skin only. I asked her to repeat that it was not a melanoma. Share how you deal with skin cancer recurrence Understanding squamous cell carcinoma Definitions, if you look them up and see them on paper, er, um, I mean, on the screen, can scare you with their worst-case-scenario descriptions. Such was the case when I looked up “squamous cell carcinoma in situ” and found this definition from the National Center for Biotechnology Information. “Squamous cell carcinoma in situ (SCCIS) is a superficial growth of cancerous cells on the skin’s outer layer. It is not a severe condition but could develop into a full form of invasive skin cancer if not detected early or well managed. It is also known as carcinoma in situ in the literature or as Bowen disease after John T. Bowen, an American dermatologist who first described the condition in 1912."1 Assessing the threat of recurrence After feeling reassured by the “not a severe condition” part, I got scared by “could develop into a full form of invasive skin cancer.” Red alert! You can go from calm to crazed without even knowing it has happened. But then if you step back and take it in context, it is not so threatening. The rest of the sentence is what counts: “if not detected early or well managed.” 2 A dermatologists checks my skin every three months. To me that sounds “well managed.” I go to Boston, 90 miles from home, for these appointments. These trips can be tiring, but it’s the best medical care around. I assume that others in Skin Cancer Land are also carefully monitored. Fear of skin cancer spreading When looking up the relationship of skin cancer to stem cell transplants so I could describe it correctly, I came upon a report about a woman, with a history similar to mine, who died after a squamous cell cancer spread through her body. Another red alert! As I said, we need to remember that when we read about dire scenarios, or know of someone who had a bad outcome, it doesn’t mean the same thing is going to happen to us. Still, I kind of wish I hadn’t read it. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:”] So, my squamous cell radar was finally off. A spot that I thought wasn’t a squamous cell carcinoma actually was one. But I wasn’t the only one fooled. A dermatologist said it looked like a scab. This one little spot sure gave me the runaround. What does squamous cell carcinoma look like? It was on the right side of my right knee and was as small as a freckle. But it was raised. The color threw me off. My squamous cell cancers have presented as tiny spots that won’t stop flaking. They are not any darker than the rest of my skin. This one was dark. Because it was dark, I jumped to the conclusion that it was a melanoma. I have no idea why I thought that. In any case, I didn’t like the looks of it, so I did the smart thing: I picked at it. Not. As in, not smart. Picking will only irritate a spot, not make it go away, but my inner picker took over. [native] Incorrectly diagnosed as a scab I showed it to a dermatologist. The doctor said it looked like a scab and advised leaving it alone. I did leave it alone, but it didn’t go away. Months passed and I had a visit with one of my other dermatologists. She said the same thing: It looked like a scab, and I should leave it alone. To back up, in case you’re wondering why all these dermatologists, I have three sets of dermatologists, and within each practice, a number of dermatologists. One is for my skin in general, one specializes in subcutaneous dermatology (looking at the innermost layer of skin), and one is my Mohs surgeon. Telehealth and delayed biopsies It had been there for months when I had my first telehealth visit. It was with the doctor who specializes in subcutaneous dermatology, but she can also do a general visit. I showed her the spot. She said she would have biopsied it if I were coming into the office. But since I wasn’t planning on going in, there would be no biopsy. Could it be melanoma? The Mohs people like to stay in the loop. I sent them a photo of the spot. The next day, I got a call. They wanted me to come in for a biopsy. I asked when. They said the next day. The NEXT DAY? I was pretty sure they were worried if they wanted me to come in the next day. Must be a melanoma, and not only that, a deadly one. Jumping through hoops for a biopsy The Mohs surgery center is in a hospital in Boston, 90 miles from home. Arranging transportation in a day under normal circumstances is difficult. My boyfriend was the only one who could take me. At this point, Boston was a hot spot, and he didn’t want me to go. I called a local dermatologist, to see when I could get in. It would be a couple of weeks. That didn’t seem bad, but it was only for a consult, not a biopsy. I was nervous and wanted to get it done. He agreed to take me. The hospital felt safe. A person greeted me with a temperature check and a mask that she extended to me from the edge of a pole. I got the biopsy and went home. I waited the usual eight or so days for the results. Surprise: squamous cell carcinoma It was a squamous cell carcinoma. I wouldn’t need a Mohs surgery because the biopsy had taken care of it. I was surprised that my squamous cell radar had been off, and I was relieved that the spot was finally gone. [lead_gen showIfLoggedIn=“0” campaign=“shortcode” source=“site”], I’m not sure what makes worry spike and then subside. It could be something I say to myself, or a few words that someone says to me, or just a tone of voice, or the natural ebb and flow of the worry wave. Every spot causes worry When I got my first squamous cell carcinoma in situ (on the skin), I was worried because it was all new to me. But after my dermatologist explained that it was on the skin and not a major health threat, I calmed down. I have had so many now that I lost count, and when my “squamous cell radar” senses that a flakey spot is going to need attention, I don’t get too worked up about it. I still get nervous when I need to have Mohs surgery, but I don’t go over the top with it. Realizing that I am ruminating on skin cancer Now a different kind of suspicious spot, on my wrist, is making me nervous. My dermatologist didn’t make much of it when I saw her a few weeks ago, but it looks different, maybe darker, to me. We’re supposed to be on the lookout for changes in a wart or a mole, right? It might have changed on its own, or it might have changed because I picked at it. But the latter possibility – that I did it myself – faded in the face of the scary one – that it might be a melanoma. Every time my dermatologist sees something, I say, “Not a melanoma, right?” She says I’m prone to squamous cell cancers, not melanoma. Trying to listen to my rational thought Rational thinking would lead to this: If it’s a melanoma, they will take care of it and I’ll be OK because I’m watched so closely that nothing would have the chance to progress. Irrational, fear-fueled thinking goes like so: It’s going to spread rapidly and I’m going to die. I suspect I’m not the only one prone to this kind of catastrophizing. Thinking only about the catastrophes Looking for a good definition of catastrophizing, I had to laugh when one of the first ones I found had to do with skin cancer. It was on the website of Headspace.com, the meditation site, and it started out with the writer going overboard on a suspected skin cancer. “I notice a dark brown spot on my forehead. I lean closer to the mirror and examine it closely. It is dark in color, with irregular borders. It’s melanoma, I’m thinking. As I brush my teeth, I imagine my final days. My friends visit, bring me flowers and sit by my bedside. My funeral takes place in a beautiful park by my house. People are huddled in small groups, speaking in hushed tones. What a shame, she was so young. I put away my toothbrush and my heart is flopping around like a fish on a pier. I reach up and touch the spot. And it rubs off. It was hair dye.1” Stop predicting the worst She writes that by ruminating, we create our own suffering. “When we catastrophize, we actually do two things: first, we predict the worst possible outcome; second, we assume that if this outcome transpires, we won’t be able to cope and it will be an absolute disaster.1” This is what I was doing with the spot on my wrist. This is how I calmed down: After I sent my dermatologist a photo, and her nurse said that the doctor would look at it...and gave me an appointment a few weeks away, I realized she didn’t think I was in immediate danger. An embarrassing realization Also, I’m embarrassed to say that I picked at it and the dark crust came off and I realized it was a scab and not a death sentence after all. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:”]

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