I’m going to whine for a little while, and then, I promise, I will have some solid, useful information for you.
I thought I knew better.
I thought I was an educated patient who would make sure to get every available piece of information before I let anything be done to my body. I thought that since the effects of the surgery for my cervical carcinoma in situ had been worse than the disease in some ways, I’d never again go for surgery without learning about every conceivable alternative. So much for that. I also thought that I was well aware of what typical skin cancers look like and what the warning signs are. Nope. Some don’t fit that set of rules.
So I feel pretty stupid at this point.
I did know that skin cancer is extremely common and that we have particular risks in New Mexico because of our clear sky and high-altitude strong sun. I didn’t worry all that much about it for myself because of my vampire-like lifestyle— I don’t enjoy being in direct sun and largely avoid it, in the same way that my mother did. I did know, too, that moles and skin tags and bumps show up more with age. The smooth, pink bump on my forehead, with its even color and its round shape with no irregularities, didn’t set off my radar. It was new in the past year or so, but it didn’t seem all that different from some other objects on my skin. Now I know that the shiny pink appearance is not unusual for basal cell carcinomas.
I did know that something was wrong. Near the mole there was a tiny triangular spot, barely visible but easy to feel, that would crust and slough off over and over and never heal. It wasn’t getting bigger, at least not by more than a few microns, but it didn’t seem right at all. Last spring I asked my gynecologist to look at it, and he suppressed a laugh as he told me confidently that it was nothing. (He is never one to belittle patients’ concerns, so he very definitely thought it was inconsequential.)
The tiny triangle kept doing the same thing, and it seemed to me that the pink mole changed color ever so slightly. They were both right in front of me every time I washed my face or brushed my teeth, so I never stopped noticing them. Eventually I made an appointment with my primary care doctor. When I got there, I told him, apologetically, “This will probably be the tiniest problem you see today.” He judged the triangle to be an actinic keratosis, a possibly precancerous lesion thought to be caused by sun, and said it would be worthwhile to freeze it off. The mole struck him just as it had me— it didn’t seem obviously malignant, but it didn’t look quite OK either. He had me make an appointment to remove it and send it to be checked out.
A couple of weeks later, we did that. I was left with a 1/4” scooped-out divot in my forehead. When a letter showed up the next week, I was delighted to see it, because they don’t give bad news by letter. I opened the letter to find that the lesion was a basal cell carcinoma and that the biopsy hadn’t gotten all of it. My PCP had figured that since we’d already discussed this as a possibility, I wouldn’t be too upset by getting the message in the mail. His assumption was incorrect.
Now, as I said, this condition is extremely common. People go through it every day and don’t make a big deal of it. I had the least problematic form of skin cancer, and only one lesion, not terribly large. As my PCP told me, it’s considered very curable. I was instructed to get scheduled for the state of the art treatment, Mohs surgery. Patients of mine had had it, and it hadn’t looked all that bad. Yet I was completely flipped out. I’d already been at the limits of what I could deal with before the diagnosis— the death of my mother, other devastating hits on the personal and professional levels, our democracy moribund if not already dead, the threat of nuclear war, and in the background the certainty of further destruction from extreme weather. This pushed me over the edge.
Part of that was because of what our cat, Rico, went through at the end of his life: He started with what looked like a tiny scratch on his nose, and it turned into a cancer that literally ate away a great deal of his face. I also had a past-life connection to cancer that was near the surface of my mind.
My PCP attempted to reassure me by email. I read whatever I could find about Mohs surgery, including some pretty technical stuff. Enough that I thought I understood what was going on and got much less anxious about it. Unfortunately, my earlier apprehension turned out to be well founded.
The practice where the surgery was done has about the best information about what to expect with Mohs that I’ve seen, on their website— but I didn’t know about it till after the procedure. No one at their office told me anything before the day it happened, nor suggested anything for me to read. I asked the pleasant young woman who assisted the surgeon to explain what would be done, when it became clear that no one was going to explain anything on their own. She only told me what I already knew, but I insisted that she go through it anyway. It’s astonishing that it wasn’t all made totally explicit, in writing, when I was asked to give consent.
As it turned out, even after all that, I had very little understanding of what was going to be done, no clue about how extensive it would be, and really not much basis to give informed consent. In fact, I don’t feel that I ever had a chance to give truly informed consent.
My husband had had a much larger cancerous lump removed from his arm some weeks earlier. It was a simple excision (that’s what they call it, “simple”), and as with me, they didn’t get all of it on the first try. He had to go back and get a bit more of a crater scooped out. The wound was about a centimeter across and fairly deep, but he had no significant pain, and it healed fairly uneventfully. I was expecting something along those lines. Since Mohs surgery is supposed to take as little tissue out as possible, and I had already had what seemed like most of the problem removed, I was not at all prepared for a dime-sized disc to be cut out, ending up with a 1 1/4” incision, with 9 stitches (not including the ones on the inside) having lumpy darts folded into my skin in order to bring the edges together, and having a chunk of my hair shaved right in front. I’d seen patients of mine who had had Mohs, and seriously, their incisions were not all as big as this.
Yes, I’m whining. Yes, I understand that until the surgeon gets in there, it’s impossible to know how much cancer is underneath the surface. Yes, I know I was lucky that he only had to take one layer off in order to get all of it. It could have been worse. But would it be so hard to TELL the patient that all this is going to happen?
I expressed some surprise and dismay at the time, and the surgeon totally minimized my concern. I had already noticed what I thought was an odd sense of humor, and he applied it again. He said that what I’d had was the smallest surgery they ever do, and that they don’t consider it big until it’s the size of a dinner plate. That is literally what he said. Then he told me that I was almost certain to get more lesions and need more surgeries.
But it got even better. Poking his finger at my nose and cheeks, touching one spot after another, he said, “You’ll get one here, and here, and here. And they’ll be bigger and more cosmetically significant.” It was as if he had put a curse on my skin, or injected poison directly into it. I was in such a vulnerable state that his words sank deeply and immediately into my system, without any filtering. I put up a feeble argument, but he repeated that a recurrence was nearly inevitable. The only excuse I can come up with for his incredibly inappropriate “curse” is that he was trying to scare me into making an appointment with a dermatologist ASAP. (Which I did.) Whatever he was thinking, his words and his attitude were the opposite of anything related to healing.
When I pointed out that seeing a dermatologist and being vigilant otherwise meant that any cancers that might start would be caught early and be small, the assistant replied, in a kind tone as if speaking to a small child, that there’s always more beneath the surface. They didn’t give me the slightest hope that there might be something I could do for prevention, just left me looking at a future of having my face sliced to pieces, with absolutely nothing I could do about it.
I wrote a strongly-worded letter to the surgeon, speaking as an experienced clinician as well as a patient, and delivered it the day I got the stitches out. Which was not done by the surgeon himself, by the way. He never even took a peek at me to see how his work was turning out. That apparently wouldn’t suit the flow of the assembly line in their practice. A different assistant did the work, and he actually supplied me with more information and advice than anyone else had. Then he turned me loose— nothing in writing about what had been done or what to do next, and no followup appointment.
Again, nothing at all was said about how to increase my chances of keeping my skin healthy. I started researching right away to see if there might be something I hadn’t seen before. The statistics I saw were dismaying— not only was the chance of a recurrence in my skin (and my husband’s) quite high, it had been found that people who had had skin cancer were at much greater risk for internal cancers as well. This was already my second brush with cancer, so that shook me up. On top of that, one of the healers who does energy work for me said that he was seeing cancers getting started in at least two other areas. By this time I was pushed well over the edge and hanging on to a very thin twig. I felt like a ticking time bomb.
But I already knew that cancer is a systemic disease, and was prepared to treat it that way.
Next: Responding to the challenge, and what you can do if you find yourself in this sort of situation