A patch showed up on my lower eyelid practically overnight. Itchy, red, scaly — and it could have been almost anything.

Having mycosis fungoides doesn’t make you immune to ordinary skin problems. It just turns every ordinary skin problem into a question. And answering that question takes months.

This episode is the process. The steroid that did nothing. Four weeks of topicals that did nothing. A biopsy on my eyelid. Seven days of waiting. And the answer I already expected, which changed things anyway.

I don’t have the ending yet. I’m telling you anyway.

The Mycosis Fungoides Rule Out – Ep. 35 – The Fine, But Not Fine Podcast

A patch showed up on my lower eyelid practically overnight. Itchy, red, scaly — and it could have been almost anything. Having mycosis fungoides doesn't make you immune to ordinary skin problems. It just turns every ordinary skin problem into a question. And answering that question takes months. This episode is the process. The steroid that did nothing. Four weeks of topicals that did nothing. A biopsy on my eyelid. Seven days of waiting. And the answer I already expected, which changed things anyway. I don't have the ending yet. I'm telling you anyway.

Podcast Episode Transcript

Something showed up on my lower eyelid practically overnight. It was itchy, and red, and raised, and scaly, and the reality is it could have been almost anything, and that’s the part I wanna talk about today, not what it turned out to be. I’ll tell you that when we get there, but the part in between, the part where you don’t know yet.

Why a New Spot Isn’t Automatically Mycosis Fungoides

I have mycosis fungoides. It is a cutaneous T-cell lymphoma. It is rare, it is incurable, and it pretty much lives on my skin, which means my skin is not just my skin. It’s this thing that we monitor, and by we, I mean me, medical professionals, family. It’s where my disease is most likely to show up. So when something new appears on my skin, I generally can’t do what most people do.

Most people find a new spot and they wait. They put something on it, they forget about it, and usually they’re right to do that. I don’t have the opportunity to assume that it’s nothing, but, and this is the part that surprises people, I also don’t get to assume it is something. I can’t look at a red patch and go, “Well, that’s the lymphoma,” because sometimes it’s not.

It might be eczema, it might be contact dermatitis, it could be a, a fungus, right? Sometimes it is actually the same boring dermatology-type thing that happens to everybody else in the world. Having mycosis fungoides doesn’t make me immune to normal skin problems. It just makes every normal skin problem a question, and answering that question takes a process, and that process is what this episode is about.

The First Four Weeks: Steroids and Topicals

So the spot, it appeared right after my April visit with my CTCL specialist, my cutaneous T-cell lymphoma specialist, which falls into the category, of course it appeared right after that. my regular dermatologist and I joked it must have been because a resident was present, and we always have to blame the resident for everything that goes wrong, right?

So anyway, first move, we try the normal things, right? I know I can’t just put any steroid on my face. Skin there is very thin, especially around the eye. There are different rules for topicals on the face. But I do have an ointment for exactly that, so I did use it for, really about a week, and it really didn’t make any difference.

Why I See Two Dermatologists

So I called my regular dermatologist. And as a quick side note, because this can confuse people, why on earth do I have two dermatologists? And that’s because I have a treating specialist for my mycosis fungoides. She manages the disease, all of my treatment, whether it’s systemic or it’s topical or it’s the NBUVB, the whole picture.

And I have a regular dermatologist, and he handles all of my regular dermatological needs, the things that would happen to me whether or not I had lymphoma. And they work together, and I’m really, really fortunate because my regular derm did part of his residency in my specialist’s CTCL clinic. So when I walk into his office with something questionable on my skin, I am not having to explain mycosis fungoides to him, and that matters.

So I go in, he looks at it, we talk about it. when did it happen? How did it come about? How did it start? What’s it been like? All of the things that happen at that time. And as we get through talking about that, he ends up with an approach, which is the right one. Let’s find out what this is. So he takes a scraping of it, you know, I don’t remember if it was a swab or how he did it, and then he sends it off to see if it’s any of a, I don’t know, probably a list of common possibilities.

He gives me a couple of topicals to use daily, one I already have in my inventory at home. And the logic there is throw the most likely treatments at it first. If it responds, great, it was one of the common things, and we’re done. If it doesn’t respond, that tells us something, too. And we talk about what happens, depending on what comes back from the scraping or if it gets worse or doesn’t go away, you know, that potentially a biopsy would be on the table, to give it a few weeks and come back. So I followed the instructions, right?

The scraping came back as pretty much inconclusive, you know? Nothing came back as, “Yes, this is what it is.” I’m doing my thing every day. I have a lot of travel actually at this time. I was, in Arizona and in Michigan, and it doesn’t go away, right? It doesn’t necessarily get worse, but it doesn’t go away.

Wy an Eyelid Plaque Gets Treated Differently

So, I hit the four weeks, ’cause I was supposed to come back in three, and I realize, oh, I was supposed to go back a week ago. And, you know, it looks exactly the same, so I call the dermatologist and get back into the office. So with the return visit, what happens is he, his nurse, who is genuinely great, we all look at it, and all three of us agree it looks absolutely no different than it did four weeks ago.

It is not any better. It is not any worse. It is pretty much exactly the same. And then we do the thing where we go through everything. How active is my disease right now? What’s it been doing the last several months? What medications am I on? What’s my patch and plaque history? What we’re trying currently and what we’re hoping it does.

What my specialist said we might have to consider if the current treatment isn’t handling my active disease. It’s all of that background, and it’s all really important, and we discussed it the first time, but now it’s a little bit deeper discussion. And at the end of it, the conclusion is we need to biopsy the eyelid because it’s not going away and because I do have mycosis fungoides and because of where it is.

It’s a really sensitive location. Now, this patch, plaque, whatever it is, I think it’s a plaque, runs along my lower eyelid, not completely across the eyelid, but it starts really at the tear duct corner, and it works its way down and out. Now, that’s that location changes the calculus here. If this was on my arm or on my leg, there’s a lot more room to keep trying things, watch it, give it another month, right?

On the eyelid, right up to the tear duct, that’s generally not a wait and see spot. That’s a we need to find out now spot. So we biopsy.

What a Shave Biopsy on the Eylid is Like

Now I’m gonna describe this because I always wanna know how things are actually done, and I think some of you do, too. So his nurse numbs the area first, so she does, I don’t know if it was single injection. I think it was multiple injections probably with the same kind of needle and syringe, and she really lets it get good and numb.

It’s not a rushed process, right? It’s just, you know, numbing, you know. And then, the dermatologist comes in, and he does a shave biopsy, and he takes that sample off of, what looks like the, the, the best part to biopsy. And, I believe he cauterized it. He uses that little pen, you know, they have attached to the electronics on the wall that kind of, you know, burns the skin, so you get to smell burning flesh while you’re in there.

That’s always exciting. And, and then you get one of those little s- you know, circular dot bandages, and off I go, and that’s it, and that’s the whole thing. The goal was simple: Is this mycosis fungoides or is it not? If it’s not, he would keep exploring and keep treating me. If it is mycosis fungoides, I would go see my treating specialist.

Why CTCL Pathology Takes 7 to 10 Days

Now, something I didn’t know before I was diagnosed with mycosis fungoides is that, a biopsy to rule out mycosis fungoides or even to find out if you have it takes longer than a typical skin biopsy.

Seven to 10 days, sometimes it can take 14. It just really depends on what all is being done with the tissue that’s being examined, right? Seven to 10 days doesn’t sound like much, right? It’s a week. It’s not a big deal. It’s a little bit different when you’re waiting for the results. 11 years ago, seven to 10 days would’ve been really, really painful.

To this year, 11 years into this disease, eh, it’s, you know, seven to 10 days. It’s not a big deal, right? Now, actually seven days out, his nurse did call, and the reason his nurse calls is because I already have this disease. If this was the first time I was hearing it, he would’ve called me like he did when I was diagnosed.

Getting the Results: Mycosis Fungoides on My Face

So she does call me. She confirms it is mycosis fungoides. It is not a surprise for me, and it’s really not a surprise for them. And I wanna be clear about that. I wasn’t shocked. Four weeks of no response to reasonable treatment had already really told us a lot. But knowing and really honestly knowing with evidence are two very different things.

And here’s the part I’ve been circling. This is absolutely the first time I have had a spot, a patch, a plaque on my face, and I want to say two things that are both true. The first is this is not doom and gloom. It does not mean my disease is suddenly advancing. My mycosis fungoides has been active pretty much most of the time I’ve had it.

That is not new. This is a new location. It is not a new trajectory. Now, the second thing is that I don’t love it And not that I’d love it anywhere, but I really do not want to have patches and plaques on my face, and I can’t imagine that anybody does. And I haven’t freaked out, but I am more self-conscious of it than I expected that I would be.

And the itching at the beginning, like a lot of these, it was, you know, it itched a lot. It itched like mad. Now, that has calmed down since, or I’ve at least become numb to it. I know I do scratch it at night, right? It hasn’t gone away. It hasn’t gotten worse. It’s just kind of sitting there on my eyelid, and then occasionally I feel a great need to run my fingernails over it and scratch it.

So I’m not gonna spend 10 minutes on this, ’cause that’s not where I am with it, but I don’t want to skip past it and pretend the location doesn’t register differently than my arm would. It does. You know, again, both things are true. I’m fine, but I also notice. So now, obviously, I need to see my specialist, right?

Why Your Specialists May Want the Tissue, Not Just the Report

I message her through MyChart, ’cause she is at Duke, and I send her a copy of the pathology report from my regular dermatologist. She gets the dermatology, report, the pathologist report from my dermatologist, and she says she wants to get the actual biopsy from the lab. So not the report, the actual tissue, the slide.

And this is a first for me. In the past, my regular derm just treated things until I needed more specialized knowledge. I’ve never had a biopsy done on his side and then carried it over to her side for treatment. And I just wanna flag this for you because I think it’s a really useful thing in this story.

Your specialist may want the physical slides, not just the PDF summary. An expert review of the actual tissue is a real thing, especially for a disease like this one where the reading is genuinely difficult. So if you have a rare condition and you’re getting biopsies done outside your specialist’s system, that is a question you can ask, right?

Does my specialist want the slides? Most patients could not answer that question unless they’ve been through it before.

Radiation for Mycosis Fungoides and Prior Authorization

One thing she did do was she did prep me that depending on how everything looks, the tissue, the placement, how it’s affecting me, radiation may actually be the best path forward. And this isn’t the first time we’ve discussed radiation.

It’s come up before for some really persistent patches and plaques. We’ve just never done it. My actual experience with radiation is basically nonexistent. My understanding is it is really, really effective for mycosis fungoides. And I’ll admit something, right? I’m sure I’m not alone here. I’ve been reading about how radiation to the eyelid works, and I really find it kind of fascinating, and that might sound strange.

I’m potentially about to maybe have radiation next to my eye, and I’m over here reading about the technique. But I’ve always been interested in why medicine does things the way it does. I’m interested in how they protect the eye if you get radiation on your eyelid, right? How do they figure out the field?

How do they figure out the dose? What are the mechanics of it? You know, how do they keep your head immobile while they deliver radiation, right? All of these things. And if I end up needing it, I’m honestly curious whether my experience will match what I’ve been reading or not.

So here’s where I am right now.

I’m waiting. She has the pathology report. She has requested the slides. I’m waiting on her read. Then I can get in, and we can decide the course of action. And if it’s radiation, no surprise here, that’s going to require prior authorization, so nothing is going to move quickly here. I don’t expect it to. You know, in that timeline, right, so far the spot appeared.

I waited seven days to go in, did four more weeks of topicals. I had another return visit with a biopsy and then another week for that pathology to come in. Message to the specialist, waiting on her review. You know, we’re months into answering one question about one spot on an eyelid, and I don’t have a treatment plan. And to hear that again, you know, I want you to hear it but differently because, you know, that’s a, a good version.

I called my dermatologist for priority visit and got in fast twice. Anything near the eye on a patient with mycosis fungoides is a priority in his office, and he has the flexibility to make that happen. And that dermatologist trained in my specialist’s clinic on CTCL. He didn’t need the disease explained to him.

My specialist is reachable to me through MyChart or a phone call and is reachable to my regular dermatologist. I sent her a pathology report, and I got an immediate response. I have a nurse that calls me with results instead of leaving me kind of, you know, hitting the refresh on the portal to see if something shows up.

What This Timeline Looks Like Without Good Access

Now if you take all of that away, all of that away. Imagine somebody else notices the same kind of spot, and their dermatologist has a six-week wait for a new patient. So they wait, they get the topicals, they come back, they’re another six weeks out, they get the biopsy. The pathologist reading it has never worked in a CTCL clinic or on anything with CTCL and may see this disease a handful of times in his or her career.

They don’t– patient doesn’t have a specialist yet. They have to be referred. That’s another wait. Their eyelid patch is what? Six, eight, ten months old before anyone even has a plan. Same spot, same disease, completely different amount of time spent not knowing. The three months this took me is what it looks like when the system works.

That should tell you something about what it looks like when it doesn’t. One more thing, and I’ll wrap this up. I do think this is worth mentioning. You know, I have had a lot of issues with, high AST and ALT liver numbers with different treatments, but my blood work for the past two months has been stellar.

No elevated AST, no elevated ALT. My cholesterol is well within the normal range. So two years of consistent exercise, a little bit of weight loss, a really different systemic medication, and my body is responding positively to all of that. So in the same two months, this body did both of those things. Best liver numbers ever since blood was drawn from my body and tested for it, and I got a new plaque on my eyelid.

Now, I’m not gonna tie that in a bow because there isn’t one. That’s just what living with this disease actually looks like. Some things get better, some things show up, sometimes it all happens at the same time. So that’s where I am, waiting on my specialist to reach back out, to want to have me come in, and let’s make a determination as to what we’re looking at.

Maybe it’s radiation, probably waiting on prior auth if that’s the case. And this is the ordinary version of this disease. It’s not dramatic. It’s Tuesday, right? It’s the Tuesday version. Something appears, you run the process, you find out. Then you start a different process. And I don’t have the ending on this one yet, but when I do, I’ll let you know.