I was busily humming away in my own bubble of concerns when my best friend Suzie sent me a text saying we should hang out and oh also she had skin cancer on her scalp.
Given that I run a skincare blog and Suzie wants to help other people avoid the same experience, we decided to record a conversation about what it’s like to discover that you have skin cancer on your scalp, the surgery process, and things learned along the way. We’re not experts at anything other than Ugly Betty trivia, so we’re focusing on what it’s like to navigate scalp skin cancer as a patient.
Suzie was diagnosed with basal cell carcinoma in February of this year and had surgery soon after. She has healed very well, but she’s bummed to have a pretty big scar on her head that’s hard to cover up while waiting to see if and how her hair returns.
One’s risk for skin cancer varies quite a bit, so ask your dermatologist or GP if you need to get regular checks. I’m about Suzie’s color and I don’t think anyone in my family has had a spot removed despite a wild disregard for SPF/love affair with our closest star, but my dermatologist pushes strongly for an annual exam. I groan and comply, but I won’t hesitate to strip down in the future after hearing about what happened to my bestie.
We could use some help, by the way! Overall, regular skin sun protection is absolutely wonderful; I love Japanese sunscreens in ways that should trouble my husband. (The 2019 Bioré Watery Essence reformulation hits all my spots and feels nice while offering water resistance, if you’re looking for a recommendation.) Sun protection for scalps is far more messy and hot. If you have any great sun hat recommendations and scalp protection advice, could you comment below? I started looking at Amazon and got kinda overwhelmed and confused (won’t sun…go through…straw hats??). I think REI has some good options, but I don’t necessarily need a wide-brimmed beach hat or pith helmet for going on walk-a-lot-eat-a-lots here in NYC. If you’re a sun hat person, pls bail us out. TTT
What follows is an edited conversation, recorded in the world’s noisiest chicken restaurant, about what it’s like to have skin cancer — including some grisly details! — on your scalp. I’ve mostly retained the original word choices and left things conversational. Thank you to the many, many people who had questions for Suzie, submitted via my Instagram Story. Here are her answers!
Tracy: One of the things that everybody wanted to know was how on earth you find skin cancer on your head. How long did it take for you to realize something’s not right?
Suzie: It’s hard for me to say how long it was there because it turned out to be rather large, which may mean it was there for a few years. This is the fourth one of these that I’ve had, so I’m familiar with some of the warning signs.
I’ve been a bit remiss [in getting regular skin checks at the dermatologist] because for a little while I didn’t have health insurance on account of losing my job, but I was told I should be going every six months.
Tracy: You’ve had earlier spots removed? I didn’t know this!
Suzie: I have two [removed spots] on my back and I had one actually removed right from my forehead on the hairline. One of the things that I’ve learned about how you’re supposed to spot these is if you have a little cut or a sore that scabs over, but then it keeps coming back and coming back in the very same spot. It seems to heal but then it opens up again: that’s a sign that it could be cancerous. I started to notice that right on the top of my head, I would pick at this one scabby spot and then it seemed to be gone, and then it was back. So I just asked D, my boyfriend, to take a look and see if it looked red or a little unusual. And he thought it did. When he told me that, I made an appointment quickly because I started to think it could be melanoma, which would be serious. But I was lucky that it wasn’t.
At my appointment, the dermatologist said, yeah, okay, let’s take a biopsy. The spot turned out to be a basal cell carcinoma.
Tracy: Honestly that looks like when I had scalp acne or irritation.
Suzie: I don’t generally have a lot of scalp irritation or itchiness, which made the spot easier to find. It was sort of pinkish, reddish and there was like a patch, like a little bit yellowy and you can tell that it’s kind of big. [For the most part,] basal cell carcinoma won’t kill you. It doesn’t spread to other areas, [with the exception of some rare, aggressive forms]. It’ll spread on the skin though. I saw horrific pictures on the Internet of people who really didn’t treat a basal cell and it was, like, eating up their face. So when you find out that you have a basal cell, you should get it removed. But it’s not like [most people] need to start writing out their will.
Tracy: Did your derm tell you “this is probably what happened”? Is this [caused by] daily sun exposure?
Suzie: That’s a good question. That’s something that I wonder and I don’t think I’ll ever know the answer, but there was an incident when I was visiting my sister in Africa about 10 years ago. I had thought to put sunblock everywhere, except I never thought about the top of my head. One day we went to the pool. I tried to be conscious of not getting too much exposure, had my towel around my shoulders, everything. But at one point I was sitting in the sun and I started to feel a burning sensation on top of my head. I honestly thought that some exotic bug was biting me. And I asked somebody, “What’s on my head?” And they said “…nothing.” And I’m like, “Wow, yeah, there’s nothing there.” It turns out it was the sun. It was the sun burning me so actively that I could actually feel it burning, which never happened to me before — ordinarily you don’t feel it until later. And for the next week or so, big flakes of skin were coming off my head and I can’t help but wonder if I did some real damage that day. But there’s also the fact that, you know, I’ve walked around in the sun in broad daylight a thousand times thinking that I was covered because I had put sunblock on my face and my neck and my hands and everything and never ever thought about the top of my head.
There’s also the fact that I got sunburns all the time when I was a kid and they say that the damage you do as a kid can really come back to haunt you. But I didn’t really do much intentional tanning in my youth and never used a tanning booth.
Tracy: Do you have a family history of skin cancer?
Suzie: My parents have had a bunch of these basal cells removed and my sisters also. My sister who was in Africa had a melanoma four or five years ago and that’s serious. But she was very lucky – it was sort of self-contained and they were able to remove it before it spread anywhere, so she didn’t have to have chemo or radiation. And she now just makes sure she’s monitored pretty regularly by dermatologists.
Tracy: Did a dermatologist ever tell you like, oh yeah, you’re Fitzpatrick type I? (The Fitzpatrick scale is a way of classifying how skin responds to UV light, sometimes thought to predict skin cancer risk.)
Suzie: We’re definitely Fitzpatrick types! [haha!] But I never actually heard of the Fitzpatrick scale.
Tracy: Someone asked you how you coped with a “having cancer” mentality. Did you really feel like “I have cancer?”
Suzie: This is a little bit different from having other kinds of cancer that are aggressive. For a little while I thought “Oh, wow, what if it’s a melanoma?” And I was preoccupied and that was what got me so quickly into the dermatologist, but once they found out that it’s a basal cell carcinoma — it’s not an aggressive cancer. It’s not like finding out you have breast cancer or one of the others that you have to be very careful and you have to do a lot of follow-up and monitoring. And I’m familiar with this because I’ve had basal cell carcinomas before and because it runs in my family, so I didn’t panic like, oh no, I have cancer. It’s more like, oh, I have this thing that has to be taken off my skin.
Tracy: How fast was it between diagnosis and removal?
Suzie: Diagnosis was early-to-mid-February and then removal, I got an appointment by the end of February, so I got it taken off within the month.
Tracy: Walk me through the experience of basal cell carcinoma removal, where did you have this done?
Suzie: At an office of [a local mega hospital]. It’s a clinic. It’s not just dermatology, they have all different offices within that clinic. I arrived at 9:30am and I think they let me leave around 1:30pm.
Tracy: So you show up in the morning for your appointment. Do you wear regular clothes?
Suzie: Yes, regular clothes.
Tracy: And there’s no general anesthesia?
Suzie: Just local, injected into the area. And so I couldn’t feel any pain. I just felt tugging and scraping.
Tracy: Question from a reader: did you have Mohs surgery to remove [the cancer]?
Suzie: Yes. With Mohs surgery the idea is to try to remove as little as possible for cosmetic purposes. If it was in a spot where you didn’t care about having a scar, they might not do Mohs, they might just take a large swatch and know that they got the cancer. But in any place where you’re trying to be careful for cosmetic reasons, they take as small a piece as they can, which they think excises the bad part, and run it over to a lab as you’re sitting there. While I was in the waiting room they ran my little sample over to their lab, which is in the same building, and they tested the edges, which they call the margins. They want to have what they call “clean margins”, which is, they want to see that they got everything. So I guess they’re testing it kind of all around [the sample]. Mine, unfortunately, was not clean the first time. So they brought me back in the room. They cut some more out, they brought that to the lab. There still weren’t clean margins and so they brought me back a third time. I suspect that the third time when they brought me back, they took kind of a large cut ‘cause they didn’t want me to be going back and forth all day. And the third time when they tested it, they said it was good. I was good to go.
Tracy: Three times they’re scraping to try to find clean edges.
Suzie: They’re basically on your skull by the third time – there’s no more skin left in that spot. And that was not nice. The cuts got bigger and maybe deeper as well. The third time I really felt like the doctors were hacking on my skull. You’re feeling and hearing it and they even cauterize the wound at one point. You’re kind of smelling it.
Tracy: As you’re waiting for the results are you just kind of like bandage-on-the-head in the waiting room waiting for them to decide, okay, we’re good to sew you back together?
Suzie: Yeah, I’m sitting there with my head cut open, the Fedex guy coming through and all the other people and the phone ringing. I’m trying to focus on the magazines that I’m reading. Due to the local painkiller, I didn’t feel pain when I was in the waiting room.
Tracy: At the end of three attempts they say, okay, finally the edges are clean! What’s the process like to close out the procedure?
Suzie: It’s actually kind of hilarious, I think, because – there were two male doctors, the main doctor and an assistant, and one of them held the two sides of my head and pushed upward to pull the skin up and over the part that was cut out and the other one sewed me up like a quilt.
The time I had a basal cell carcinoma removed from my back, it wasn’t so bad. There’s more flesh there to work with. When they sew you together [in a fleshier area], it’s not such a big deal. They have more leeway to work with. So it was just rough because it was on my scalp.
Tracy: Did you need someone to take you home?
Suzie: No, I walked myself home. But I was happy that it was in my neighborhood because that made it much easier and simpler. I did go to work the next day, but I didn’t feel fully myself for a few days. I wasn’t incapacitated, but I was in some pain. The doctors said just to take regular over-the-counter drugs like Tylenol. There was some pain but it wasn’t terrible. I was supposed to sleep propped up on pillows for a couple weeks, so that my head was higher than my heart, because otherwise there would be a lot of throbbing in my head. They recommended that I not run or do any exercise for the first couple weeks.
I went into work the next day, but my friends at work were like, “why did you come in, you really should have taken more time.” It’s true. It was rougher than I expected. I even was going to go to work after the procedure and people in the doctor’s office were like, nah, you’re gonna want to take the rest of the afternoon off.
Tracy: So how long did you have to have a bandage on your spot?
Suzie: I only had the bandage for a day. I couldn’t really continue putting a bandage on my hair because it would have ripped out the remainder of my hair.
Tracy: And you probably couldn’t get the area wet, right?
Suzie: Actually, no! I was supposed to start washing the wound as of the next day! That felt counterintuitive to me, to put water on it right away, but those were my instructions. For a while I used baby shampoo to wash my hair. It kind of grossed me out to touch the scar. After the first few days I got used to it.
Tracy: So did you not have stitches?
Suzie: I had about 15 stitches, which were supposed to stay in for two weeks. They made me a follow-up appointment and pulled them right out. That part wasn’t painful. Just a little itchy.
Tracy: My instinct for a wound that wasn’t cancerous would be to put lots of skincare on in hopes of getting the hair to grow back quickly. But if there’s been cancer there [can you do that]?
Suzie: They did say if you want to keep applying Aquaphor or Vaseline, that scars heal better when you keep them all greased up (my phrasing!). So I have been trying to be diligent about that, which is a drag because you wash your hair, you make it look nice and then you immediately add some greasy stuff which eventually travels all the way down and it makes your whole head look yucky. But whatever. In the long term, I want this to heal.
Tracy: Did your doctors say that there’s a chance that the hair will come back and just be normal?
Suzie: When they looked at my head before operating — because I had a visit for them to look it over before the surgery happened — they said: “you have great follicles!” I guess I have a lot of follicles per square inch or something. They seemed to be saying that that would be good, that it would cover up the scar. But now I’m frankly a little bit worried. I think the cancerous spot was bigger than they thought. The scar may be wider than they were first anticipating. And in my experience you don’t see hair sprouting out of a scar. Right? So I don’t know. I kind of want to make a follow-up appointment with them, but if I ask questions, it’s not like it will change anything at this point.
Tracy: It looks like there are follicles kind of sprouting out. Maybe it won’t be bursting from the division line itself, but it looks like it’s coming back around the area.
Suzie: I guess I anticipated that the scar would be a thin line, so no big deal: I’d have hair on one side of it and hair on the other side. But it’s more like a couple of circles, right? I didn’t anticipate that. I truly hope that enough hair will grow back. I’ve been doing a kind of comb over, which works okay when I really do it carefully and my hair’s clean and it’ll puff up and you hardly see it. But I want to be able to have a short haircut and if I have a short haircut it would definitely be more visible. The doctors… I was in such a daze when they finished the surgery that I did not think to ask about the cosmetic aspect of it.
Tracy: “Hey now that you got my cancer after three attempts, let’s talk about the cosmetic impact.”
Suzie: By the time they made the third cut, it started to feel kind-of agonizing. I was just like: “When can I go, can I go, oh I can go. Thank God. Okay.”
But I would say a word of warning: I really feel I should have gone to the same plastic surgeon who did this [nice scar from an earlier cancer removal spot on Suzie’s hairline]. I should have gone to the same guy for this one. I was being a little cavalier because my feeling was, well, it’s buried under my hair, so who cares? Never thinking, well what if my hair doesn’t come back?
Tracy: So did the plastic surgeon who did your hairline spot, did they do the Mohs procedure as well, where they did live tests?
Suzie: Yes. And I now wish I had gone back to him because he did such a good job on this [earlier spot], that even if [my scalp cancer removal] came out looking bad, like it does now, I would have confidence that he was very capable and it had to be that way because it was so large. Whereas I’m rather underwhelmed [with the look of the scalp wound] with the result I have now, and I don’t know whether it was inevitable, or whether he just did a lousy job.
Tracy: Especially in New York, I feel like a lot of the people who do functional surgeries with an “aesthetic result” as they say, basically where it looks nice, a lot of those doctors are not in network for any insurance. And so if you’re coming from not having insurance, you might be like, oh my God, I just have to deal with the cancer NOW.
Suzie: Yeah. I thought: Let me find someone who is in network – and this doctor is the chair of a department, and I thought: ok, this should be fine. Right? But I can’t help but feel like this was not the best work he’s ever done.
Tracy: So it’s been just under two months since your surgery. How’s your recovery going?
Suzie: It’s been good. I had pain for a few weeks, but it wasn’t overwhelming. And then I had itching for another week or two. The wound gets itchy, but that means it’s healing. And now, one and a half months later, it doesn’t bother me when I touch it. It feels a little tingly if my finger is right on it. But other than that it seems to have healed well. Regarding my hair regrowth concerns… My sister, who is a nurse and very competent, tells me it’s too soon to know how or when the hair is going to grow back. I may ultimately decide to find a specialist, if it seems to be a long-term problem … so that can be another blog post! 😉
Any sun hat recs? Comment below!