This edition of Pathology Perspectives is a departure from my typical offering. I usually start with a description of some pathologic condition, and then go through demographics, etiology, and signs and symptoms, and I finish with implications for practice, often with a call to action for massage therapists. But in this article, we are going to take a very brief look at a subtype of squamous cell carcinoma, and then track in detail the progress of the condition and treatment with a person who has generously shared her story with us.

Squamous Cell Carcinoma: A Quick Review
Squamous cell carcinoma (SCC) is cancer that affects the keratinocytes, just superficial to the basal layer of the skin. It is diagnosed in about 1 million Americans each year. Usually SCC lesions are simply removed with liquid nitrogen or a shallow incision, and no further treatment is needed. But in some circumstances, SCC has a potentially dangerous pattern that I had never heard of before I began developing this article: perineural invasion.
Perineural invasion (PNI) is a feature of a small number of cancers that affect the face and head. In this situation, cancer cells use motor or sensory nerves to travel and possibly metastasize to other locations. This pattern is almost exclusive to cancers that affect the face and head; most other forms of cancer use blood, lymph, peritoneal fluid, or direct contact to move to new locations.
PNI occurs in approximately 5 percent of diagnosed cases of SCC, and it is associated with an increased risk for cancer recurrence, local and distant metastasis, and a poor prognosis. PNI can be found in a few ways. The clinical presentation is that a person might describe symptoms of neuropathy: numbness, tingling, pain, or weakness in some area of the face. The histological pattern shows abnormal cells inside the perineurium (the wrapping around nerve cell fibers). One of the tricky things about PNI, however, is that it can cause “skip lesions”—that is, these depositions of abnormal cells are not necessarily continuous.
When SCC is diagnosed along with PNI, the treatment likely to yield the best outcome is Mohs surgery (a procedure that removes tissue in layers until a clear margin has been established), followed by radiation. Sounds simple, right? It isn’t.

Leading Up to Diagnosis
If you are involved in the world of massage therapy or bodywork, it’s safe to say that you have benefited from the work of Jan Schwartz. Jan is a former massage therapist, educator, and volunteer for numerous national and international organizations dedicated to massage therapy and integrated health care. The short list of Jan’s volunteerism includes stints on the boards of the Massage Therapy Foundation, the Commission on Massage Therapy Accreditation, and the Academic Consortium for Complementary and Alternative Health Care (now the Academic Collaborative for Integrative Health). Jan was also the cofounder of online education provider Education and Training Solutions, LLC.
Jan is a mature, fair-skinned Caucasian woman. She grew up on the Jersey Shore, when laying out in the sun coated with baby oil was favored over the scrupulous application of SPF 90 sunscreen. She has lived in Tucson, Arizona, for 25 years, where she enjoys outdoor activities, including swimming, gardening, and hiking. All these factors: her age, a long history of sunburns, and current location and habits, put Jan squarely in the high-risk group for various types of skin cancer. For this reason, she has always been diligent about twice-yearly visits with her dermatologist.
Jan has a long history of minor skin cancer incidents. But about six years ago, she had lesions on her scalp that were first observed not by her or her dermatologist, but by her hairstylist. “You have some spots I’ve never noticed before,” he said. “You might want to have them checked out.” That remark led to more invasive treatment: Mohs surgeries on her scalp and forehead.  
Her most recent bout with skin cancer was the most serious to date, and Jan—ever the educator—invited me to share her story, so that others might learn from her experience.
It began when Jan noticed a suspicious change in the skin close to the center of her upper lip in July 2017. She had a dermatology checkup scheduled for early August, so she didn’t rush to make a new appointment. In fact, many of us saw Jan during that time, as we celebrated her retirement and many contributions to the profession at the Alliance for Massage Therapy Education meeting in Tucson.
But during that five-week period, she saw the lesion change rapidly. By the time she saw her dermatologist, it was a palpable bump of about a quarter-inch, with scaly, slightly darker skin than the surrounding area. It was not painful or itchy. It would have been easy to ignore or miss. But her dermatologist diagnosed it as a squamous cell carcinoma, a common type of skin cancer with a small-but-not-zero risk of metastasis.
Jan saw a plastic surgeon, who performed a Mohs-like surgery. The margins of the lesion were clear, and the surgeon was so skilled that the scar tissue was almost imperceptible: all in all, an excellent outcome.
But the following week brought some bad news. When Jan went to have her stitches removed, she learned that the analysis of the excised tissue showed signs of perineural invasion. This means the cancer could travel along nerve fibers from the skin and show up in other disconnected areas in the head or neck, including in the brain. The safest option was to follow surgery with radiation. Lots of radiation.
Her oncologist predicted that 30 doses, given five times a week for six weeks, would probably take care of it.

The Treatment
When the time came to start treatment, a medical physicist (who knew such a specialty job existed?) determined the appropriate radiation dose, which had to be delivered with pinpoint precision. To achieve that, they made a mask: a flat piece of plastic mesh was heated and then put on Jan’s face to conform to her shape as it cooled and shrank, a process that took about 45 minutes.
In some ways, making the mask was harder than the early radiation treatments: “It was the most horrible feeling to have your face, muscle by muscle, compressed,” Jan says. “You can’t move at all. I’m not claustrophobic, but this was really anxiety-producing. I could feel my heart racing, I was clenching and unclenching my fists. They told me they could stop if I needed, but then they’d have to start over from the beginning. I made it through.”
After the mask was made, the radiation treatments were fast and efficient. The setup took about five minutes (“They have to bolt you down,” Jan says), and the radiation itself lasted 40 seconds each session. Jan came through the first several appointments with flying colors and no big side effects.
After the 10th treatment, Jan noticed a tiny blister on the inside of her upper lip. By the end of the weekend, the blister had spread to the entire inside of her upper lip. Although the radiation doses were small, the burning continued to destroy cells even between treatments, and this was the result. Jan’s medical team was surprised to see such severe blistering this early in the treatment series; although every person reacts differently, this was something they expected at the end of a six-week program, not in the middle. They persisted for another week—the halfway point—and by that time the pain was intolerable. The sessions were halted for a week.
Jan’s lip was so swollen she couldn’t talk or eat. She lost 10 pounds, and healing was slow. When it was time to resume treatment, they used a device called a bolus over her lip to limit the radiation scatter, and thus the collateral damage that was causing so much pain and tissue destruction.
Treatment number 30 finally concluded. It took two weeks for the swelling to subside, and several more weeks before the blistering cleared up. She couldn’t brush her teeth throughout the whole process; she used special toothpaste in a dental tray. The fatigue that accompanies radiation was maddening, but slowly improved. “It’s not the way I wanted to start my retirement,” she says, “but it’s good I had nothing else to do.”
The pain of the blistering on the inside of her lip was intense. Oxycodone was helpful during the worst of it, making it possible to eat a little (mostly through a straw), so she could fight the fatigue and weakness. She used a mouth rinse with lidocaine, Benadryl, and Maalox to numb her lips so she could eat. Not surprisingly, everything tasted like Maalox for the duration of that intervention.
When salivary glands are exposed to radiation, they die. With less saliva in the key area, the blistering skin would frequently become glued to her top teeth—for weeks she essentially had to rip off the healing layers and start fresh every day. She couldn’t touch her burned lip with her fingers, so she put shea butter or Aquaphor healing ointment on her lower lip to apply to the upper lip as best she could.
The complications of her cancer treatment became a profoundly emotional experience. Jan was frustrated with the pain that didn’t seem to have an end in sight, plus a constant burning sensation on the outside of her mouth, along with crushing fatigue and the loss of the ability to eat without pain.

The Best Outcome
Now, several weeks later, Jan’s mouth is mostly healed, but she still considers eating regular food a daily trial—and sometimes a triumph. She uses a Chinese burn cream on the outside of her lip. The affected skin is darker brown than the surrounding area, and it feels dry, swollen, and immovable “like an accordion that is stuck shut.” It is safe to touch her lip, and although it is painful to manipulate it, she does so regularly to work on improving the quality of the tissue.
Jan’s last follow-up appointment was positive. Her oncologist is confident that the cancer has been stopped, and she has a clean bill of health. In the meantime, she has no facial hair in the radiated area, and her salivary glands may never recover. But this won’t slow her down. In the coming year, she and her partner plan to travel to Mexico, Israel (conditions permitting), Denmark, Sweden, Norway, and England. Jan is a devoted lover of life, and thanks to her diligence and her health-care team, she has a lot more to enjoy.

“You’re lucky it’s just skin cancer”
What are the takeaway messages from all this?
Jan was wise to track any changes in her skin and to have regular appointments with her dermatologist. That’s a recommendation many of us can follow and make for our clients in similar circumstances.
Jan’s first lesions weren’t noticed by her massage therapist, but a lot of people’s are. And her hairstylist’s language (“You have some spots I’ve never noticed before. You might want to have them checked out.”) was perfect: clear, nonalarmist, without a hint of diagnosis.
Jan didn’t use massage therapy to help her cope with her ordeal, but a lot of people do. And it’s obvious from this story that special accommodations for pain, fatigue, and painkillers would be necessary.
What Jan did hear from some massage therapists was troublesome: “You’re lucky it’s just skin cancer.”
I hope that what we’ve described here makes it clear that “just skin cancer” is not an accurate way to describe what Jan has been through. There is a prevailing attitude that skin cancer is a trifling problem, nonthreatening, and easy to treat. Jan’s experience of squamous cell carcinoma with perineural invasion demonstrates that this is not always true. And that common misconception prompts her to share an important message to massage therapists: skin cancer isn’t easy. If Jan hadn’t been so diligent about her skin checks, she could have been in serious danger. As it was, she went through a lengthy and taxing treatment that put her at risk for system-wide infection and worse.

The Role of Massage Therapists
Massage therapists have a unique privilege: we see more of our clients’ skin than they do themselves, and with regular clients, we see that skin over the course of time. With that opportunity comes a responsibility: we need to inform our clients when we see something that might require some attention. How we bring it to their attention is the tricky part.
I love what Jan’s hairstylist said. How simple, how ordinary, how lifesaving! In the years that I have been a pathology educator, I have heard from many massage therapists with their versions of this story: a time when they recognized something on their client’s skin and it turned out to be an important finding.
A couple of research studies highlight that the medical field appreciates our role as “first responders” in the context of skin cancer. But this role requires that we become deeply familiar with the forms and presentations of this disease, and that we become as comfortable as possible with expressing our concerns, while staying within our scope of practice. It is not appropriate to say, “Wow, sure looks like a big basal cell carcinoma here!” when we massage someone’s scalp, but if we see or feel a suspicious change in the tissue, it is appropriate—and important—to say something like, “I notice something here that you might want to show your doctor.”  
How do you start this dialogue? Do you need some practice with a willing colleague? When this issue comes up, as it inevitably will, I hope you conduct these conversations with compassion and courage. What you say could save a person’s life.

Ruth Werner, BCTMB, is a former massage therapist, a writer, and an NCBTMB-approved provider of continuing education. She wrote A Massage Therapist’s Guide to Pathology (Lippincott Williams & Wilkins, 2016), now in its sixth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com.