By Jill E. Duffy
After a delicate surgery to remove basal cell carcinoma from my face, my dermatologist suggested I do a round of fluorouracil. Known by the brand name Efudex, this topical chemotherapy may lower the chance of getting skin cancer. To prepare, I read as much as I could about how it works, its efficacy, and what to expect during treatment.
Efudex, or as I call it, the eff YOU cream, is prescribed to adults who have a high risk of melanoma on parts of the body where it’s difficult to simply cut it out, like the face and hands. The cream sinks into your skin, finds precancerous cells, and kills them. At least, that’s how I understand it. I’m not a doctor and no part of this essay is medical advice.
Testimonials online showed people who looked like burn victims, their faces blotchy and red. They complained that their skin dried out. Some had trouble sleeping. Very few had acute pain, but everyone looked uncomfortable. Surely these are extreme cases, I thought. Only the most shocking content goes to the top of search results. Plus, there’s always the disclaimer “your results may vary.”
My results did vary in part because the worst effects happened after the point when most videos and blogs ended. Expectations are everything.
Although I was scared, I decided to do Efudex because I didn’t want to have Mohs surgery ever again. It had been more traumatic than I anticipated — not the surgery itself, which my doctor explained so thoroughly that I could picture exactly what was happening as she worked, but the final step of sewing me up. She told me in advance, “I won’t know exactly how I’ll do the sutures until I get to them.” Fine. When the time came, she needed to free up some skin to get enough slack to pull everything together. This she did with scissors. I laid on the operating table hearing every snip about an inch from my ear. It sounded like crunching snow. I was suddenly very aware that a team of people were slicing open the good part of my face, the part that didn’t even have carcinoma, and my job was to trust them. All my muscles tensed. “Just. Hold. Still,” I told myself. The last thing I wanted to do was twitch.
After that nightmare, giving myself a chemically induced sunburn to prevent future operations sounded like a good deal.
For two weeks, I snapped on a surgical glove and applied a thin layer of Efudex and a vitamin D derivative called Calcipotriene all over my face and chest, once in the morning and once before bed. Mixing the two together was meant to speed up the effects and keep my treatment time short. Once I “had the reaction,” as one nurse put it, I could stop, even if I hadn’t hit the two-week mark. She added, “If it gets to be too much, you can stop.” I was determined to make it to the end, believing it would give me the full benefits of the treatment (remember: I’m not a doctor). The nurses, doctors, and pharmacist all hammered at me to avoid sunlight since fluorouracil makes skin extremely photosensitive. Here are some highlights of what happened.
Day 1. The first day of treatment, I was terrified. Efudex is a thick white cream. Calcipotriene is semi-translucent and extremely viscous. Neither has a smell. I worried they’d sting as I put them on, but they were as mild as Vaseline.
I traced my gooped-up finger around my lips and eyes, being careful to not get too close to them, and spread a thin layer everywhere else. Could I feel it? How about now? Did my skin look red yet?
Nothing happened.
Days 2, 3, 4. In fact, for four days, nothing happened. The tip of my nose felt dry and rough, but that was all. I wore a hat, face mask, and sunscreen (always!) outside.
Days 5 and 6. The first hints of red appeared on Day 5, but to the outside eye, I didn’t look much different. My chin, the areas on either side of my mouth, and the divots next to my nostrils turned pink. At night, they were inflamed, dry, and tight, but not painful.
To this point, I hadn’t had other side effects, like headaches or nausea, but I was thirsty! So thirsty! I chugged several glasses of water a day.
Day 7. The halfway mark! All the pink areas were now darker. It looked like I yanked a starfish off my face. If you saw me, you might think I had a rash or an allergic reaction.
I work remotely and have for years, but if I had an in-person job, I would have stayed home starting around Day 7 or 8.
Days 8 and 9. “Efudex feels like a sunburn.” Everyone says this, but I noticed quite a few differences. Sunburns are painful for me, and they come on in a matter of hours. With Efudex, the effect came on so slowly that it was pain-free, at least to this point.
Maybe it’s more like boiling a frog than a sunburn, I thought, so gradual that you adapt as it happens, but before you know it, you’re past your breaking point. I wasn’t there yet. My skin tingled, but it didn’t burn. Sometimes my face felt hot, though.
Sleeping became an issue. Finding a position where I was comfortable but not rubbing the Efudex onto my pillowcase was tough. Since my skin was clammy with ointment, every speck of lint in the air gravitated toward it and stuck to it. The irritation kept me awake. I felt like a loaf of Spam that had fallen on a dirty floor.
Day 10. Job interviews have a way of popping up when you least expect them. I had been hoping to get an invitation to a video call within the month, but I didn’t expect it on Day 10 of Efudex treatment.
All the skin that used to look rashy now resembled a birthmark. My chin was blooming. I doused myself in concealer. The color was better, but the tightness was so severe that I couldn’t smile, laugh, or make full facial expressions. Maybe the interviewer assumed I had the personality of Lilith from Frasier. I could have said, “Oh by the way, I’m in the middle of a topical chemotherapy treatment.” She would have understood, but I didn’t want to go into it. I hadn’t told anyone about it other than my partner.
A few weeks later, I got the job.
Day 11. While my face continued to suffer, my chest saw no reaction whatsoever. Healthy skin isn’t affected by Efudex at all. I was thankful.
All the discomfort had been minor until the morning of Day 11. The smearing motion of putting the Efudex on either side of my nose and underneath my eyes hurt.
In my diary, I wrote, “I honestly think I may have hit the worst part of this experience and that these final few days will be more of the same.”
How naive.
Days 12 and 13. I was anxious to start healing when the nurse’s words came back to me: “If it gets to be too much, you can stop.”
The morning of Day 12, I didn’t treat my chin or around my mouth. The discomfort had crossed into pain. I could not bear another day.
Aquaphor was my new best friend. Once the Efudex and Calcipotriene absorbed into my skin, parts of my face were so dry that they cracked if I didn’t slather them every few hours.
Day 14. My last day. I was sleeping terribly. I woke up in the night desperate for more Aquaphor. My face was so sensitive that if it got anywhere near the sheets, the fabric felt like an emery board. At least it’s almost over, I thought.
The Healing Phase. I got one thing massively wrong about the eff YOU cream. I assumed that when I stopped applying it, my skin would begin to heal. That didn’t happen.
It seemed like (not a medical expert here!) the Efudex that had penetrated days earlier was still doing its job. “Maybe all these layers of skin underneath have to grow out before I look and feel normal again,” I thought.
Healing Day 1. More pain around my mouth, chin, and base of the nostrils. The delicate skin under my eyes also hurt. Aquaphor helped, but I needed to reapply it every two hours.
I was texting with my older sister who had had melanoma before the age of 30 and I decided to tell her about my topical chemo for the first time. I sent her a selfie and said, “It’s worse than it looks.”
“Oh my god!” she wrote back.
Healing Day 2. Although my face was on Healing Day 2, my chin was Day 4, since I stopped the process earlier. It wasn’t looking much better.
Some skin was drying out so badly that even Aquaphor made it throb. I switched to vitamin E oil, which did the trick but made a mess. I went to bed early with two ibuprofen and slept fitfully on my back.
Healing Day 3. The parts of my face that didn’t react too badly to the Efudex were less red and much improved. The worst areas began weeping. Patches of dead skin accumulated at the surface. This reaction, I hate to say, was still considered normal, although I assumed it would happen during the treatment, not after. I thought by now I’d be feeling better, when really, the first few days of healing were by far the worst.
I took a washcloth for babies and stuck an ice cube in it to cool down my face. Some areas were too painful to touch, but putting the ice near them helped.
Healing Day 4. Fresh pink skin appeared on my chin. It was less sensitive and looked new. The area under my eyes continued to weep and reminded me of something from a David Cronenberg film, Jeff Goldblum in The Fly maybe.
Washing my face was a challenge, and I hadn’t done it properly in days. In the shower, I could put a drop of mild soap in my cupped hands, fill them with water, lower my face in, and blow bubbles out my nose. To rinse, I wrung a washcloth with cool water over my head.
Healing Days 5, 6, 7. I spent the next few days icing my face at night, sleeping well, and waiting for new cell growth. The area under my eyes slowly stopped weeping and turned into dead skin.
While doing the face-washing dance one morning, I snagged a piece of skin on my forehead with the washcloth and it bled. Small setbacks like these could ruin the day.
Later I had a video call. I tried to dab on a little makeup, but it was a flakey mess. Camera off, I decided.
At the end of the first week of healing, some of the new skin was scaly to the touch. I thought it was supposed to grow back like it had been or even better, but no.
One Month Later. Little by little, the color receded and the pain went away, but some skin was still rough. After a month, I tried a gentle exfoliation, which did very little. Was my skin permanently changed? Would it ever be normal again?
I visited friends and told them why I had a pink starfish shape on my face. It wasn’t as dark as before, but it was still there, visible enough to have to explain it.
18 Months Later. A year and a half later, my face was mostly back to normal, except my chin. Convinced that it may never be the same, I started talking about Efudex more openly.
I told one of my younger sisters, who also had skin cancer before age 30, that Efudex may have created a permanent rash.
“What toothpaste do you use?” she asked.
She was pregnant at the time and having allergic reactions to foods and substances that had never bothered her before. Like me, she swore by baking soda toothpaste. Then one day, the skin around her mouth blew up. Her dermatologist told her to switch toothpaste before they tried anything else. It worked.
“No way,” I thought. I ran out and bought a tube of Colgate. Within a week, my chin was more or less back to normal. Finally!
Just like when I had Mohs surgery and freaked out while I was being stitched up, the worst part of Efudex was the end because I didn’t have clear expectations. I wish I had known that the first few days of healing could be worse than the last days of application. I also wish someone had prepared me for how long it might take for all the redness and roughness to disappear. Chin aside, it took months for the rest of my face to look right. (Your results may vary.)
Some patients who use fluorouracil end up doing more than one round of it, usually a few years apart. Am I ready to do it again? If studies continue to show that it reduces the chances of developing skin cancer, then yes. At least I’ll have a more accurate idea of how it might go when the time comes.