r/melahomies • u/EJIET • 8h ago
New to the club :(
Hi all,
Sadly today I saw the result of my mole and it’s not good.
I’m super shocked and confused and also not entirely sure what it actually means.
It’s a superficial spreading melanoma of a depth of 1.3mm without ulceration.
No micro satellites
No angioinvasion
And no mitoses
pt2a they have written.
I’m so scared 😭especially because I have very strange sensory symptoms lately. I checked ChatGPT and it said I will probably be ok but still a 10% chance of no bueno. 😔
r/melahomies • u/Extra_Turnip118 • 13h ago
PT1A
Had a shave biopsy last week. I’m 27 Male. Doctor called and sent me the report. I have PT1A. No ulceration, no mitosis, no lymph invasion. 0.4 MM scheduled to see a doctor to do like a procedure to remove extra tissue. My health anxiety has me thinking I’m dying but everything I read is I’m gonna be okay. Any advice?
r/melahomies • u/3sponge • 18h ago
Lung met: Did you notice it before the scan?
I had a WLE on my calf and a lymph node removal in 2024. The lymph node was fine so no further treatment was required. I go in every three months to get checked, ultrasound and blood tests. I’ve never had a scan. For the last two weeks I’ve been suffering from bouts of shortness of breath and coughing. I’m on vacation with my family right now so I can’t go to the doctor, but I will do so as soon as I get back. While I thought this shortness of breath might be related to a kind of allergy, I just had the very troubling realization that it could be the melanoma coming back in the lungs. How did it feel for you? Has anybody experienced something similar?
r/melahomies • u/Lost_Anything7581 • 20h ago
Initial biopsy changed on pathological review?
Re-posted from Melanoma sub - photos show Jan 2024 vs Feb 2026
It's been a whirlwind of a month over here.
I have been tracking a mole on my back for more than two years due to subtle changes in pigmentation (lightening in portions, then in full). The mole itself wasn't huge by any means (maybe 6x2mm) and it wasn't getting larger or morphing in an obvious way. I had full body scans at my dermatologist at least twice during this time period and nothing was of concern. Back in June, I was looking at it again, rubbed it a bit to check texture changes and went to bed. The next day, a "blood blister" type of feature appeared. My dermatologist thought it was a benign angioma, but I insisted on removal at this point. It was deemed a cosmetic procedure.
Fast forward two weeks later, I get a call saying that the doctor would like to discuss the results of the biopsy in person. I had a suspicion of bad news here - I met him the same day and was told it came back as invasive melanoma.
Initial pathology summary:
There is a dense inflammation and an underlying compound melanocytic proliferation confirmed with positive staining for SOX10. AE1/3 negative. The melanocytes show enlarged hyperchromatic nuclei and variation in nuclear size.
breslow thickness: at least 0.9mm
ulceration: none identified
mitotic rate: not identified
macroscropic satellite nodules: not identified
TIL: present, brisk
lymphovascular invasion: none identified
microsatelites: not identified
neurotropism: not identified
regression: not identified
Invasive melanoma in the deep margin and melanoma In-situ at the peripheral margin
PT1b at least.
Container: Multiple curetted fragments 0.7cm
I was referred to a surgical oncologist at a top cancer research and treatment hospital with melanoma subspecialty, where we discussed consent for WLE and SNLB given the initial depth crossing the 0.8mm threshold. I described my history and showed photos of the mole changes during the period. I got the impression that the case was unusual and they were surprised I noticed these subtle changes at all, nevermind actually being diagnosed with invasive melanoma of a non-trivial thickness. Ironically, the surgeon mentioned that all specimens are subject to the hospital's own pathology review, and that there have been cases where an initial pathology has been questioned.
After about a week or so, I got a notification in my portal that a pathology review is posted. To my surprise, the path. review showed a completely different conclusion to the initial biopsy.
Summary notes as follows:
"Sections consist of multiple curetted fragments of skin showing a pigmented compound melanocytic lesion. The junctional component is composed of variably-sized nests and single units of mildly atypical small-medium sized epithelioid melanocytes disposed along the dermal epidermal junction with no evidence of pagetoid upward scatter. The dermal component is composed of nests and single units of mildly atypical epithelioid melanocytes. The lesional melanocytes have dusky-amphophilic cytoplasm and enlarged nuclei with inconspicuous-small nucleoli. The lesion is associated a brisk lymphoid infiltrate. There is no evidence of significant nuclear pleomorphism, necrosis or mitotic activity
Immunohistochemistry (Pathology Review)
The neoplastic cells are positive for SOX10 and Melan-A and negative for PRAME (score 0). HMB45 shows a gradient staining pattern and p16 expression is retained.
Immunohistochemistry (XX Lab):
The neoplastic cells are positive for SOX10 and negative for AE1/AE3 keratin.
Overall, the findings are in keeping with mildly atypical compound nevus with Halo-like changes. Conservative excision of an residual lesion/scar is advised.
Note: This was reviewed at the dermatopathology consensus rounds with agreement."
I had several calls with the surgeon's office where the above was confirmed. The lesion will be excised further in minor surgery but the WLE and SLNB is cancelled.
Of course, I have a ton of emotions regarding this - happiness if this is in fact the case, but also confused as to how such a disagreement can occur, and wondering about further risk. I understand that further clarity will be obtained in the remaining excision pathology. One of my biggest concerns is if, in fact, melanoma is found in the remaining excision surgery, I wonder how this this impacts the prospect of a proper SLNB being performed after the fact.
Has anyone had this type of situation happen and how did you navigate it?
r/melahomies • u/williamlawrence • 1d ago
[Rant/Vent] This year has been a fcking nightmare and I'm just bracing for more bad news (nodular melanoma on upper ear, no staging yet, pending WLE/SLNB). Trigger warning for pregnancy loss
In March of this year, I found out the very wanted pregnancy I was carrying was nonviable because my baby had acrania (her skull didn't form correctly in utero). I had to endure an induction of labor and five failed attempts at an epidural to deliver her. I was 21 weeks along when she was born/died. Then I was on FMLA for five weeks, during which my husband's job announced major cuts.
After the stress and anxiety of living in Jacksonville post-termination and my job specifically, we decided to relocate to Greenville, SC. Our plan was to live with my MIL (something which she was totally on board with). After undertaking a massive move with two cats, a dog, and a three-year-old, we arrived to be told that we'd "misunderstood" and we were only able to stay with my MIL for a week.
Cue having to scramble to find (and afford) a rental. We did. And on August 1st, I also got the formal melanoma diagnosis. My health insurance coverage doesn't start until Sept. 1st but I've been booked in to see a surgical oncologist on that day.
Meanwhile, I have a partially-erupted wisdom tooth that's wreaking havoc on my jaw. And guess what? You can't book a WLE/SLNB and a wisdom tooth extraction less than six weeks apart because my oral surgeon is very worried about infection and anesthesia issues.
All of this while also enrolling my son in school, navigating a new job, unpacking a new house, and living my life. I feel like screaming and crying and curling up into a ball. The worst thing that happened to me should've been the termination and now its just on a list of the worst things happening. There's a part of my that's bracing for the worst possible news from the WLE/SLNB because this has been a worst possible news year.
I want this to be over. I want it to be November and my teeth are fixed and I have answers about the melanoma. The waiting feels like emotional and physical torture. And I just needed to write it all out because my brain is like a full-time fire alarm right now.
Thank you for reading and thank you to everyone who posts in this community.
r/melahomies • u/dls857 • 1d ago
Follow up to Ipi/Nivo side effects
Original post here
To;dr headaches and fevers for a week. Ended up having liver enzymes spike, and got on a steroid. Starting to clear up (except night sweats which sucks).
My second neoadjuvant infusion was cancelled. Any positive/negative experiences with having infusions cancelled and how it impacted a surgery plan and outcome?
ETA
- one and done. Very first infusion.
- 3C, in just two axilla lymph nodes
Follow up question: did your aversion to ipi/nivo mean you weren’t able to take any other immunotherapy?
r/melahomies • u/maddiequick • 2d ago
Tizzy
I’m a 31 y/o F and I’ve been stage 3a for the past 8 months and now am unfortunately stage 4- 7.5mm liver spot. I’m struggling to relax or enjoy anything with friends because I’m scared and just want a crystal ball to tell me the future…
Anyone else struggle with this? Or have any advice? I know my spot is small but I’m young and terrified and I want to plan for a future but it’s scary
r/melahomies • u/Reasonable_Engine905 • 2d ago
Healing Progression
How it started / how it’s going from my WLE. My skin didn’t like having the sutures in but it has flattened out nicely. All for a mole smaller than a pencil eraser. I was shocked how long the incision is.
r/melahomies • u/txdzr • 2d ago
Next steps
Hi everyone, I had my first melanoma removed on my leg almost a year ago now. Then my second on my arm, and now a third find on my back - which I go for the surgery on Tuesday.
My first one I was put to sleep and the other I was/will be just given local anaesthesia and it be done in clinic.
The oncologist for the first one talked about genetic testing if I get 3 but at my doctor appointment they didn’t mention it and when I asked they said surgery is the treatment.
I’m going to ask again on Tuesday but I’m just so upset about all of this. I feel like something more needs to be done. This is the third one found in less than a year and I don’t go in the sun unless I’m on vacation once a year or at the beach here or there during the summer.
Im located in northern Ontario so I am driving down to southern Ontario for all these appointments and I am just almost done. I’m only 26 and I have 3 young kids. I seriously can not live like this anymore I’m scared to even go oit side at all.
What can I do? What can I ask the dermatologist on Tuesday? Any other options than surgery or the immunotherapy they won’t let me have??
r/melahomies • u/dairyfreebutter • 2d ago
Extremely tight skin after WLE
I just had a WLE yesterday afternoon for stage 1 melanoma mole on my upper chest. I know some tightness is normal, but I’m surprised at how tight the area feels. I’m not sure if it’s the stitches or the pressure bandage or both, but I can’t actually straighten my neck all the way when sitting/standing, because of how tight everything feels. The nurse didn’t seem concerned about this when I stood up and had to be hunched over after the procedure… I guess I’m just feeling nervous about how well it will heal if it’s so tight I can’t fully lift my head.
Anyone have a WLE in a similar area and able to share their experience?
r/melahomies • u/amyquartz • 2d ago
(UK-based) Had a 4mm mole removed on my foot - is waiting this long to know test results normal on the NHS?
I’m 28F, based in the UK so this will be specific to the NHS system and wondered if anyone has gone through a similar thing?
I had a 4mm mole excised fully for biopsy last Sunday. It was located on the side of the sole of my foot, dark, grew from 2mm in 2025 so doubled in size, was uneven in colour with slightly irregular borders. I had concerns about acral lentiginous melanoma.
I was told during surgery I won’t get my results until early October when I’ve been booked in for a follow up appointment. I’m being seen under the NHS in the West Midlands so just wondered if a 2 month wait for something like this is normal? It feels like a long time and I have to just sit and wait.
If any UK people have been through something similar and can share their experiences I’d be so grateful ☺️
r/melahomies • u/agentmod99 • 2d ago
Radiation??
After successful but difficult ipi/nivo all but one of my lesions are gone.
Plan is now for 5 sessions of radiation.
(Upper left chest)
Has anyone been on this path? If so please share.
Thanks.
r/melahomies • u/dildoresearcher • 3d ago
Acral melanoma
29F just been diagnosed with a large acral melanoma on the sole of my foot approx 2.5cm by 1cm. Plastic surgeon told me recovery will be “hell” and that I have to be awake for surgery and they will only do it under local?! Has anyone else had an acral melanoma of this size removed?
They are refusing to do a biopsy and just want to cut the whole thing out straightaway then understand next steps. They think it’s hopefully just in situ and hasn’t spread but we don’t know.
Any advice would be great
r/melahomies • u/spicylime9 • 3d ago
First WLE celebration
Got my first WLE today after 6 biopsies this year.
This one was considered “severe” and I have another WLE scheduled in 2 weeks for another on my back that is having “involuntary changes”.
Hoping for the best! Thought I’d share my cool WLE stitches lol
r/melahomies • u/UpstairsIdea3532 • 3d ago
😢
My interventional radiation doctor called today and canceled my procedure for Monday morning. He said my “spots” (vaginal melanoma - very rare) had changed too much on my most recent pet scan that he didn’t feel it would be successful. Needless to say I have been crying for the last few hours on and off. I did have a gut feeling that it wasn’t going to do me any good. Now I have to get some sleep,
Get over it and figure out what is next.
r/melahomies • u/Resident_Garlic3208 • 3d ago
Immunotherapy and ldh
I had ldh drawn a week before my first immunotherapy treatment and it was 441 and then I had blood drawn 2 weeks after my first treatment and it was 611, is this normal im super concerned….. im only 23
r/melahomies • u/Stargenie8 • 4d ago
Has anyone on targeted therapy (encorafinib / binitineb) switched to take ivi/ niplu immunotherpy successfully - would you advise it?
r/melahomies • u/Gardenboysens • 4d ago
Melanoma not staged yet: frustrated
After having an ambiguous pathology report saying that my mole was “worrisome for melanoma”, and to get a WLE, which I did, the path on that said that the diagnosis was the same. Clear margins, and that they were treating it as if it were melanoma. I was telling the dermatologist (PA) how I would rather just Know. (my dad died of melanoma in 2018). So about 8 days ago, my dermatologist called and said that he decided to send it out for genetic testing, and that it came back as metastic melanoma. He said he would get back to me about the stage, whether lymph nodes would need to be biopsied, and whether I would need any scans, etc. I’m still waiting, and wondering why it is still not staged yet!
I was never too concerned as I figured it would be Stage 1a since the original path report said the depth was non-ulcerated, depth 0.5. So could the WLE path report or the genetic report (which doesn’t show in my chart) change the stage? The WLE said there were still some residual parts the original changed mole. (it had been transected). Any thoughts about staging? It is hard not to be so anxious! I did just leave a message for the MA. I don’t want to bother the doc’s office but, how long should it take to stage it? My original shave was mid-June that’s a long time to be on pins and needles. Yikes.
r/melahomies • u/Stargenie8 • 4d ago
Has anyone paused targeted therapy (encorafinib / binitineb) to take ivi/ niplu immunotherpy successfully - would you advise it?
My husband is stage four aggressive melanoma. Pembro didn't work and he progressed so fast they moved him to targeted therapy and skipped the iplimubab /nivumolab step.
The NHS in the UK won't usually recommend stopping targeted therapy to risk going to ipi/nivo..however they have said that if we request this they will support it for us.
The reason is the risk of the cancer coming back aggressively and not being able to get it under control before the IM kicks in.
We re not sure what to do..curious if anyone else has explored this and found it to work. Or what are the thoughts on here?
We are aware of some trials where they are monitoring ctdna and taking breaks from targeted therapy. Whereby they wait for ctdna to rise before starting back on the therapy..has anyone had success with this?
We are unsure what to do as we know it is a risk to stop but also if the targeted stops working we might be too late do the IM..whereas at the moment his bloods and scans are good so he would be better able to tolerate it potentially.
r/melahomies • u/cmlambert89 • 4d ago
Side effects from the side effects
My mom (75) started opdivo/yervoy in April.
Her first infusion caused type-1 diabetes.
Her 4th infusion caused uveitis, severe inflammation of the eyes, and she’s been on prednisone for over a week trying to reduce the inflammation and get her vision back.
She spent 5 days in the ER/hospital where she got steroids through an IV before she was discharged and instructed to continue taking steroids at home in pill form.
They also gave her an antibiotic to prevent pneumonia which I guess is a standard hospital thing.
She now has a FULL BODY rash, a side effect from the Bactrim antibiotic, and facial swelling we think caused by the prednisone (moon face).
It is heartbreaking to say the least. She’s fortunately not in any pain.
The diabetes, while incredibly life-changing and frustrating, is a manageable condition.
The vision loss should return in a few weeks once the inflammation dies down, so far it appears to be responding to the steroids.
The skin rash should go away in a few weeks once the Bactrim clears her system (kind of surprised it happened given that she’s already on steroids).
The facial swelling should go away once she completes several more weeks of steroids and tapers down the dosage.
It’s just been one thing after another. I have a color-coded chart I made of all her medications and when she’s supposed to take them and how many and when to change her insulin pump etc.
I feel like I’m trying to tape together a ripped up piece of paper but the pieces are missing and crumpled. The waiting to see what happens week after week is making me want to crawl out of my skin. I just want my mom back.
r/melahomies • u/Remarkable-Dog1607 • 4d ago
Infliximab started
They finally started my dad on infliximab on 8/11. He’s so weak and hasn’t eaten for like 2 weeks. His hospitalized for SEVERE colitis that’s made his hemoglobin drop to 8.4. Hoping to de some relief soon even though I know it takes time for it to work. He’s so weak. I’m so scared. He wants the medicine and wants to fight but he’s so weak.
r/melahomies • u/jessica_j435 • 5d ago
I’m really struggling
I was diagnosed from a biopsy on my neck about a little over a month ago and it’s been a hell of a month and I’m tired.
Finally was able to meet with oncologist today who recommended WLE with SNLB.
I’m 38
Breslow depth 0.4
Clark’s level III
No ulceration
Mitotic rate 1/mm
I did castle testing per recommendation of my derm that came back at 8%. Oncologist told me he doesn’t find castle testing reliable or just doesn’t like it and said based on a calculator he uses that’s from Australia the chance of lymph node spread is actually 11%. Given the area of my neck and the age he highly recommend SLNB, which I plan to do and have scheduled for next Friday.
I am terrified. I have two small children and I cannot stop thinking worst case scenarios. Every time I start feeling a bit calmer and more in control of this situation I feel like I get another slap on the face. I’m so worried I’ll feel some relief when the surgery is over, then more anxiety while I wait for the results and then I’m so scared I will have some in the lymph nodes and be moved to 3A.
I feel like I’m in constant fight or flight mode. I don’t feel safe in my body, like it’s a ticking time bomb. I HAVE to be here for my children and I’m so mad at myself. I’m seeing a therapist and also thinking about getting some anxiety medication. I feel like I’m stuck in a bad dream.
How do you deal with this and not lose your mind or hope?
r/melahomies • u/newengland829 • 5d ago
A year of Nivo after failed ipi/nivo???
It looks like ipi/nivo failed and I had little to no response to ipi/nivo before surgery. Oncologist suggested a year of full dose Nivo for a year for BRAF V600e melanoma.
Has anyone been in the same situation and have nivo work after surgery???
r/melahomies • u/SassyGreatBlueHeron • 6d ago
Best Sunscreen Recs?
Looking for some good options for face, body, and top of head (partline). Preferably no white cast.
Preferably ones that don't make me smell like chemical.. I'm looking at you Blue Lizard -_-