Mycosis Fungoides 101 (Cutaneous T-cell Lymphoma CTCL for Dermatopathology Pathology Dermatology)

[@JMGardnerMD]

Excerpt from my cutaneous hemepath 101 video (full video here: kikoxp.com/posts/5356). A complete organized library of all my videos, digital slides, pics, & sample pathology reports is available here: kikoxp.com/posts/5084 (dermpath) & kikoxp.com/posts/5083 (bone/soft tissue sarcoma pathology).

[@lamia6396]

Most thank you

[@SongOfSongsOneTwelve]

Hi Dr. Gardner, I wish doctors wouldn’t rush through these “rare” diagnoses! They are probably UNDERdiagnosed, which is why they are rare- not because they never occur! I’m going to comment so your medical students can see how a patient experiences this condition. Here is my story (so far): I have primary Sjögren’s syndrome and recently discovered cherry angiomas all over, with a new band on my upper back, and bilateral, partially indurated, erythematous, hypopigmented, and slightly atrophic patches on face with cigarette paper skin and some scaling, just below them in arcuate form, with new telangiectasiae, as well as FMF-looking patch on the lower back- all extremely pruritic. They recently came about with a surge of hormones (peri-menopause). I went to a dermatologist who had looked at the photos I’d sent ahead of time to my PCP and had already decided when I got to her office that I was working myself up before she even saw me because she told me in office with an attitude that I took as patronizing (which really hurt my feelings, by the way), gave a quick glance at my back with a gentle swipe of her hand and pat on my shoulder. She then glanced momentarily (and not with a dermatoscope) at my face and dismissively informed me that she wasn’t worried and that I looked “fine”. The dermatologist did not mention that FMF was in the differential to the pathologist, even though I told her that FMF is a concern Interestingly enough, I also have a patch of spiky skin (I postulate this is also a variant of MF) near my left elbow and many subcutaneous nodules on my arms, trunk and thighs (some tethered and painful, all of which were also not examined and were just as quickly dismissed by the doctor because my mother has them, as well). Prior to these (extremely pruritic) cherry angiomas and various follicular patches, I’d also been found to have a Bartholin gland cyst, axillary cyst, acrochordons, and velvety, intertriginous patches (that I suspect to be AN, but that were also immediately dismissed by the doctor, as they do not appear to be hyperpigmented). In addition to the small moles and cherry angiomas in a band across my back, there are several small, pruritic, erythematous papules on my chest, face and back, with symmetrical, confetti-type of vitiligo on my face, chest and arms. Both eyebrows have been losing hair over the lateral/superior aspect- also highly pruritic. I get a photosensitive rash on my face, arms and chest (with systemic symptoms). The malar rash has always spared the nasolabial folds prior to experiencing the telangiectasiae there. The 3” follicular patch on my back has perilesional halos. Other changes in my hair (thinning and some alopecia) and nails (deep longitudinal grooves, non-traumatic splinter hemorrhages, Beau’s lines, and distal nailfold dystrophy). CBC showed a small decrease in lymphocytes, anemia (chronic), low lipase (chronic), mild protienuria, slight increase in eosinophils, along with zinc and vitamin D deficiency, but on the whole, WNLs (with the exception of a weakly positive ANA and +SS-A). Both sides of my family have autoimmune diseases, along with a family history of cancer (few different types- melanoma being one of them), so along with having red hair, green eyes and freckles, I’d insisted on biopsies (unfortunately, she failed to recognize the follicular patch, and did not take a punch of it, but took one nearby, instead). Unfortunately for me, she’d sent the biopsies (3 in total) to a pathologist who was not a dermatopathologist and the results came back as you would suspect for early (misdiagnosed) FMF. I have had 20 doctors so far (specialists, not including my PCP) and have had to fight tooth and nail for every test I’ve had. I’ve been made to feel like everything is due to anxiety or else they want to say it’s all GERD (which I do not have and was proven by EGD and took every type of PPI for months with no effect) or some kind of GI issue (they always want to say I have Crohn’s). Other signs and symptoms of pSS which I regularly experience are polyarthralgia, polyneuropathy, polymyopathy, asthma with recurrent bronchitis, unstable angina, previous SCAD episode, HTN and TIAs, neurological decline (mental fog, word substitution, memory impairment, etc.), BPPV, nephrocalcinosis, xerosis, oral aphthae, nasal aphthae, chronic dry cough, night sweats, random low-grade fevers, hyper/hypoglycemic episodes (not unlike HHS), palpitations, widespread, (tetany-like) muscle cramping, bilateral flank pain (bilateral nephrocalcinosis), epigastric pain with nausea and diaphoresis (chronic pancreatitis), tendinosis, fasciitis, bone spurs and chronic, burning lower back pain both mechanical and referred). I also have an adrenal adenoma (which is currently being tested for pheochromocytoma), overactive bladder and obstructive sleep apnea. Having pSS complicates everything because none of my doctors are knowledgeable about the syndrome and have all- except my neurologist and nephrologist- have no answer, give no diagnosis, and subsequently, no treatment (with the exception of HTN, OAB and OSA, along with opioids for joint pain). I have yet to find a good rheumatologist, still! I’m in pain all the time and cannot work due to the widespread pain and fatigue, along with hypersensitivity to everything (as soon as I get stressed out- physically or emotionally), I get hives and puffy eyes and am just miserable. I’m not the type to be anxious or depressed, but after all of these tests and issue, I also know deep down that something is very wrong, and it is starting to really depress me. I’m writing to any and all of the specialists that I know to find help. After researching all of these issues I’d been experiencing on my own, I am finding that my case is very similar to other people with Sjögren’s syndrome. They also attest how difficult it has been for them to finally get diagnosed (properly).

[@kevanhubbard9673]

Common as far as skin lymphoma goes but still very uncommon although there may be more people with very low grade Mycosis Fungoides at Stage 1a who think that they have ezecma or psoriasis.The problem is it only tends to get diagnosed when it gets serious at the 2b stage as that's when the people end up in hospital.Visually advanced Mycosis Fungoides looks pretty similar to PCTL NOS and similar things but I suppose under the microscope you can tell the difference.

[@matthewz7343]

Thank you for another great teaching video, Jerad!

[@deneishaamberglenn848]

I love your videos! I started having a small rash back in Aug 2021 and now a full blown body rash. Very very itchy skin. I’ve been to 4 different dermatologist and I’ve had 6 biopsies done. My biopsies have all came back either, dermatitis, pityrias Rosea, or nummular eczema. Nothing helps! I’ve had steroid shots, steroid pills(prednisone) and steroid cream and all steroids would make the rashes go away and the itching stops. However, when I’m done with the meds or creams the rash comes back either in the same areas on my body or in different spots on my baby

[@JMGardnerMD]

I’m sorry to hear about what you’re going through. Some rashes and other skin diseases can be very challenging to diagnose and may even require multiple biopsies over years in some cases. Particularly when skin biopsies show the subtle changes as in the diagnoses you mention from your biopsy reports. Treatment of skin diseases can be difficult also. Please continue to follow up with your dermatologist. You might ask if your case can be presented at dermatology grand rounds at your local university medical center if you live close to one. Dermatology Grand rounds is where the dermatology department comes together to discuss very challenging cases and try to figure them out. It doesn’t always solve the cases but at least it gets multiple different points of view and sometimes really good ideas arise from these discussions that can end up leading to the correct diagnosis or a treatment that works better for the patient. There’s usually no cost to the patient although sometimes they will ask for you to show up in person to be examined by the team. I hope that helps. Best wishes for health and healing.

[@deneishaamberglenn848]

@@JMGardnerMD thank you so much! Great information! I’m patiently waiting now for my dermatologist to present my case at one of her grand rounds. I’m hoping to get an answer soon☺️

[@Eugene0804]

I thank you cordially for your excellent video

[@nibussss]

What's tagging...lying across...the?

[@allhope1612]

I am in treatment for 1b CTCL

[@JMGardnerMD]

Best wishes for health and healing.

[@meenachoudhary7119]

Can u suggest tha treatment of mycosis fungoides

[@amaliyadipita6906]

👍🏾👍🏾👍🏾👍🏾👍🏾👍🏾👍🏾👍🏾👍🏾❤️❤️❤️❤️

[@michaele.4702]

I call foul on the name of this, I wasn't paying close attention and thought we were going to hear about fungal mycosis infiltration. :)

[@Hipp0campus_1]

That's the wonderful thing about this is disease. It's literally called Fungal Fungus and has nothing to do with fungi (except maybe some clinical aspects).

[@kevanhubbard9673]

A different kettle of fish! Another one I mix up is Follicular lymphoma and folliculotropic Mycosis Fungoides.

[@R_Aryan]

😢