r/Melanoma

Hi! I'm new here and english isn't my first language so I'm sorry I will make mistakes...

Two of my moles got removed and today I've seen the results online...one of them is pT1a melanoma and I'm really scared now.

I noticed about a year ago that this mole had been growing and it didn't stop. So the third dermatologist who saw it took me seriously this summer and she adviced that I should remove it.

I have a lot of moles. I'm going to make pictures of all of them tomorrow morning with a ruler next to them. I will go to an other dermatologist at tuesday (mine is at vacation and isn't available right now), but I'm really scared right now and don't know how to break down the news for my parents (my father will probably overreact and my mother will minimize the problem).

I'm trying to be rational and look strong, but I'm really scared, I cry a lot and I feel too early at 22 to have these kinds of problems...I'm not really scared of my death or my pain, but I'm scared of the pain that my loved ones will go trough or that my future children will have these kinds of problems and I shouldn't reproduce...

I was wondering if anyone has had experience with a double diagnosis of diverticulitis, and colitis due to immunotherapy. My mom ended Opdivo/Yervoy in March 2025, but has had colitis off and on for the last 6 months. The Gastro said it should clear up on its own, but that didn’t happen, and now antibiotics aren’t working. He suggested at the last appointment that she have part of her colon removed. Is this common?

38M diagnosed with Stage 3C melanoma from a mole in the middle of my groin. Due to the location of the original tumor, it affected both lymph node basins in the groin. Pre surgery Natera ctDNA was positive at .20 MTM/ml. I completed neoadjuvant IPI/NIVO, WLE, and SNLE where they removed 6 nodes on the left and 1 on the right. 5 tested positive from left and 1 on the right

Due to the amount of nodes involved, they bumped me up to Stage 3D. Pathology revealed approx 30% of tumor remained with the rest necrosis, and immune cells. Following surgery m,y ctDNA test were negative. As result, they recommend BRAF/MEK inhibitors for a year since I am V600e positive for any in-transit cells that may or may not be there.

Has anyone has good success with these inhibitors staying NED for years to come at Stage 3D??

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?

My husband might qualify for the SUPRAMe trial In the UK..we are waiting to find out of his blood is HLa positive to be eligible.

Has anyone else had success on this trial? TIL is also an option. How did you decide between these two possibilities.

He is stage four aggressive melanoma. So we are trying to line up a plan b in case targeted treatment stops working. He is braf positive and on enco/ bini for about three months.

He is also dealing with urinary tract infections and joint pain in the ankles which we think are side effects from the targeted treatment.

Hi friends - I just had my 3rd WLE for my 3rd InSitu Melanoma in 5 years. While I feel extremely lucky this was caught early I’m living in terror that there is another Melanoma somewhere on my extremely fair freckly skin. I feel like it is brewing somewhere and this will kill me. I’m 45.

I’m going to put all my complaints out there right now as I feel like you are the only people who understand. I’m a little more than 48 hours post WLE on my calf and this sucks! It hurts to walk, I’m scared to rip open my stitches. And I’m swollen.

Also why do people act like this is no big deal. Like I’m being a baby hobbling around or saying I’m scared that I’ve been diagnosed with cancer 3 times. Yes very lucky it was stage 0 but still. Plus getting your skin chopped off while you are awake isn’t exactly fun!!!!

Thanks for listening .

I am really struggling. I have been in remission for a year and had clean CT scans back in May of this year. I had a pet scan yesterday and it lit up like a Christmas tree with 10-12 new lesions. They were all in fat, muscle, or lymph nodes. None in my organs. In the past the most lesions I’ve ever had come up at once is 3. And that was before Opdualag put me in remission.

However, I’ve had severe side effects from the Opdualag and had to quit. (Severe capillary leak and have been on steroids, infliximab, and IVIG).

I don’t see my oncologist until Monday. Has anyone else had an outbreak of lesions on a PET that wasn’t cancer? All the AI engines indicate since my immune system is so jacked up that it could have created sarcoidosis nodules. But I just don’t want to have false hope if that isn’t likely.

I’m sure when I see my dr on Monday he will order a biopsy.

I was recently diagnosed with melanoma. I’m getting surgery to remove the remaining tumor and do a lymph node biopsy next Friday. My original biopsy was 7/9 and it’s been a hell of a long and torturing month. I’m still waiting on final stage after lymph node biopsy but currently 1A. I’m younger (38) and the tumor was on my neck so it’s a bit more high risk which is why lymph node biopsy is being done.

I’ve always been an anxious person but this has sent me over the top. I spoke with my PHP last Friday and he prescribed me hydroxozine as a prn and lexapro. I tried half a pill of the hydroxizine this weekend to see how it affected me and it did nothing so I plan to try a full one when I don’t work. However, I really think I need more than just a PRN to get me through this process. My brain is constantly thinking worst case scenario and I’m worrying all the time that I will die and leave my young kids behind.

Has anyone had experience with lexapro or any other anxiety meds during their cancer treatment?

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.

My sister was with my dad yesterday at the hospital and said He said he feels horrible. The worst he's ever felt. He does say he wants to die but trying to tell the hospital how low he is and not to let him die as he lays in his hospital bed unable to get out of it.

He’s 75 and before April of this year had never been hospitalized a day in his whole life.

I don’t even know how to face this. How to help. What to do. He has such severe colitis that he hasn’t eaten barely anything more than a bite or 2 a day for the last 3 weeks. He was going to the bathroom with lots of blood almost immediately after ingesting anything. The gastrointestinal dr finally stopped being an asshole and allowed the oncologist to get him started on the Infliximab on 8/11. He has to feel getting blood transfusions because his hemoglobin drops below 8. He’s still in the hospital because it’s the safest for him with his needs and situation.

His scans said that almost all of the cancer is gone but a few spots and all of those are smaller by at least 50%.

He’s beating cancer but diarrhea is going to kill him?

Any insight. Encouragement. Anything. Because him saying that and being this sick has made me nearly incapable of daily functioning. And I feel helpless and selfish for feeling like this.

Hello everyone,

Recently diagnosed with MIS of the left lower leg and had my WLE yesterday. Not only am I shocked by how big the incision is, I am also shocked by the amount of numbness I am experiencing. I’m wondering if this is a common experience and if anyone else has regained some feeling in previously numb areas. My entire lower leg from the knee to the dorsal aspect of my foot is numb.

Im completely spiralling. My severely autistic non verbal son needs a biopsy from behind his finger nail as he has a sinister mark there. While at the hopsptal discussing what would happen during the procedure, a senior dermatologist came in, my son was on my husbands lap and the dermatologist straight away told my husband that he had a concerning mole on his arm that in his opinion should be taken off asap. We went in there terrified about the next steps for my son and came out with a possible double diagnosis to the two people I love the most.

The biopsies will take up to 10 weeks to come back and all I cant think off it the worst case scenario

My parent had stage 3 melanoma nearly 6 years ago, it was removed and his full body scans have been clear ever since. But he told me that it never spread and it was just removed. I remember reading it was Stage 3B or something like that, and that it had ‘satellite metastasis.’ There was no lymph node removal, he never did any chemo or treatment beside from routine checks.

im so scared of it coming back stage 4 it’s my worst fear im just trying to understand his prognosis. Every time he complains of aches or I hear him cough I start to spiral idk how to cope with this fear

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 call's 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?

I was diagnosed with malignant melanoma yesterday morning. Stemming from a mole I thought looked suspicious on one of my arms. I spotted that mole 2 years ago but didn't think much of it. Funny how fast time goes by and then I finally decided to go see my doc to get a biopsy. I know nothing about what stage I'm at yet and what not. I've researched it online against advice because, well, that's just the era we live in.

My doc put in an urgent referral for the cancer centre to get seen. I'm waiting on their call. Every reputable article I've read says that this type of cancer has excellent chances of being treated when detected early. I have two questions; what does "detected early" even mean (since I've had this mole for 2 years)? And, how do you stop yourself from thinking about this constantly?

I'm angry at myself for waiting so long. I've also been having 24/7 GI issues for the past 2 months that my doc couldn't figure out and now I'm worried it's all related. My rational mind is telling me to wait for more info, but it's impossible to think of anything else.

PS: I'm not sure if this counts as "health anxiety" since I was already diagnosed. Sorry if it does; I couldn't think of a better forum than this one to ask.

I’m finally have a consultation with the doctor who will do my surgery on Wednesday after a bit over a month from my initial biopsy. Initially my derm recommend mohs surgery due to it being on my neck. The case manager at the cancer center I was referred to said the doctor who reviewed my case sent it over to oncology which would be a traditional WLE but didn’t know why. She said “maybe because of your age I’m not sure.” The mole is on the left side of my neck near lymph nodes obviously and I guess younger age it can spread to lymph nodes a little easier (from what I read).

Looking forward to finally talking to the doctor Wednesday but wondering if you would do an SLNB with these stats.

Superficial spreading type
Breslow: 0.40 mm
No ulceration
Mitotic rate: 1/mm²
pT1a
Deep margin negative
Castle: 8%

So I'm here because I've been given the results of my most recent pet scan. For some background i have been stage 3c since I was diagnosed in 2015 became Ned had a recurrence in 2020 stage 3c recurrence in 2024 stage 3c recurrence in 2025 stage 3c which led to localized mets in my left breast and a mastectomy. I planned on reconstruction after radiation. I started having pain in my right upper back and figured where I had been recently working out that I pulled a muscle. After a whole it got a bit worse and my primary diagnosed me with pneumonia I was put on antibiotics and it seemed to be getting better but then took a turn. I went to the hospital because it was so painful I figured I just needed a stro get longer course of antibiotics. They did a ct and I was told my bloodwork showed no sign of infection but it could be fungal and the ct read it was either that or mets. I had a Pet scan only days later and for the first time ever after only 3 hours my oncologist himself called to give me the results as he said it's not good. I now have mets in my lungs as well as my sternum I am now stage 4. My radiation course was changed to focus on my sternum and I have opted tp participate in a clinical trial that focuses on a genetic deletion my tumors show. I wa Ted to do TILs but because of how fast it spread I don't know if the period of 6ish weeks it takes to grow my cells and doing nothing but waiting would be a good idea. I do still have other options if the trial doesn't show any results I can do TILs, mek, chemo. I have failed every i.munotherapy and have shown a resistance to pdl1's.

My current problem within this is the amount of pain and nausea. They had me meet with palliative care and I now have pain meds but they don't seem to be working very effectively I have a fentanyl patch and oxicodone to back it up. Does ot take time for the patch to get onto your system and work?

I am devastated heartbroken and mad I am physically exhausted and so easily annoyed by everything and everyone around me. Don't worry I also have a referral for therapy because wow do I need it.

My dad got the colitis from the yervoy/opdivo regimen. He was hospitalized. The last week and half then moved to a rehab to help build strength. They said he had cdiff. He can’t eat. He spends all day pooping water. He’s getting weak and dehydrated the rehab isn’t getting to help if he’s on the toilet the whole time all night all day. Why won’t they do the infliximab. Why won’t anybody do anything. His scans came back he’s beating the cancer but now he’s going to die of diahrea????????????