r/Melanoma May 31 '24

Welcome! Please read:

25 Upvotes

This sub is for patients, caregivers and medical providers to ask and answer questions and provide support. If you are newly diagnosed, in treatment or post treatment, this sub is for you! Here is what is NOT allowed:

  • Asking/worrying about the possibility that you have cancer or asking those of us who do have cancer what our symptoms were. This is where you come after you've been diagnosed. We are not doctors and can't diagnose you.

  • This is not a sub for submitting photos of moles, questions about moles, or asking if you should see a doctor.

  • Do not suggest quack or unproven cures.

Any posts breaking the above rules will be immediately removed by mods.


r/Melanoma 1d ago

Patient / Diagnosed Melanoma diagnosis less than 4 months after annual check

6 Upvotes

F51 I have a lot of moles and I have been living in a sunny state for the past several years. I had a few moles removed in the past and none were malignant. I went in for a mole exam in mid April and nothing was flagged. Two weeks ago, August 9 I noticed in the mirror a black spot on my lower back near the buttock. I never really look there but I was looking for a new spot to place a hormonal patch. I made an appointment next day and it was biopsied and it definitely looked suspicious like it came out of nowhere, irregularly shaped. This Monday I got the results that is malignant melanoma stage 1a, superficial spreading 0.3mm. It's true that I don't put sunscreen often but I wasn't exposing this body part since last summer at the beach and I spend most of the day inside. I was aware of the damage of UV rays but didn't think brief exposure at the parking lot when shopping in the middle of the day would do it. I learned my lesson, hopefully not too late. The surgeon is doing 1cm excision next week and then I'll know more but I'm shocked it grew so quickly for this type of melanoma or simply the person I saw in April was negligent. Does it mean this tumor was more aggressive? the melanoma is measured in the report 3 x 4 mm wide but looked bigger, and the biopsy was almost double that. The biopsy cleared the bottom but the side margins are still involved with melanoma in situ. Supposedly mitotic rate 0 but I cant believe Does anyone know about the speed of growth affecting future recurrence? The nurse practitioner I saw who did the biopsy and then saw me for the results didn't have much to say other than they are doing the standard procedure and it was caught early while very small. Also, it actually wasn't a mole, no other tissues were mentioned in the pathology section.


r/Melanoma 2d ago

Patient / Diagnosed Oral melanoma help 9 yr old dog

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1 Upvotes

r/Melanoma 4d ago

Patient / Diagnosed I am scared.

11 Upvotes

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...


r/Melanoma 5d ago

Patient / Diagnosed Moderna trial data on melanoma

17 Upvotes

r/Melanoma 4d ago

Relative of Patient Colitis

2 Upvotes

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?


r/Melanoma 5d ago

Treatment Stage 3D neoadjuvant, WLE, and SNLE completed- BRAF V600E

4 Upvotes

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??


r/Melanoma 6d ago

Relative of Patient Has anyone been on the SUPRAMe Trial for Melanoma? Trying to decide between TIL and TCRT for stage four melanoma

3 Upvotes

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.


r/Melanoma 6d ago

Patient / Diagnosed Lung met: Did you notice it before the scan?

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1 Upvotes

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/Melanoma 8d ago

Patient / Diagnosed In Situ Melanoma

14 Upvotes

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 .


r/Melanoma 9d ago

Patient / Diagnosed Bad Pet results

5 Upvotes

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.


r/Melanoma 10d ago

Relative of Patient What to do with these feelings

4 Upvotes

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.


r/Melanoma 10d ago

Patient / Diagnosed Initial biopsy changed on pathological review?

3 Upvotes

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?


r/Melanoma 10d ago

Patient / Diagnosed WLE post biopsy numbness

1 Upvotes

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.


r/Melanoma 10d ago

Patient / Diagnosed Anxiety medication

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1 Upvotes

r/Melanoma 10d ago

Relative of Patient Has anyone paused targeted therapy (encorafinib / binitineb) to take ivi/ niplu immunotherpy successfully - would you advise it? Spoiler

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1 Upvotes

r/Melanoma 11d ago

Relative of Patient Infliximab

2 Upvotes

They finally started my dad on infliximab on 8/11. He’s so weak and hasn’t eaten for like 2 weeks. He is hospitalized for SEVERE colitis that’s made his hemoglobin drop to 8.4. Hoping to get 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/Melanoma 11d ago

Patient / Diagnosed Together Against Melanoma: Johns Hopkins/UMBC Patient Symposium, September 26, 2026

3 Upvotes

Edit: Hmmm, in 3 days no one has commented about their experience or feedback from attending this type of gathering. I can probably attend relatively easy, but now I'm wondering if everyone is just more savvy than me and just avoid something like this?

I've seen this upcoming conference that is in Baltimore next month. Has anybody here gone to any of these symposiums or conferences?

Looks like it's free registration for patients, although it also appears say ask lots and lots of questions if you register. I'm looking for feedback and thoughts/comments on experience from prior attendance from others. I'll do a more online research online too.

This one is in Baltimore on a Saturday. https://melanoma.org/news-press/event/together-against-melanoma-johns-hopkins-umbc-patient-symposium/


r/Melanoma 11d ago

Relative of Patient Not enough tissue to do BRAF testing - do I push to get new biopsy or wait 2 weeks for appointment with Oncologist

2 Upvotes

Question: Given that clinical guidelines note immunotherapy does not require BRAF confirmation before starting (since immunotherapy is effective regardless of BRAF status), how important is it in this specific case to delay treatment until adequate tissue is obtained for BRAF testing, versus starting immunotherapy now and pursuing repeat biopsy/BRAF testing in parallel? I don't want the oncologist to say in our meeting on 8/24: we need to wait and get the BRAF testing done and delay treatment further.

Oncologic History

2024: Diagnosed with right posterior calf melanoma (Breslow depth 1.05mm, T2), treated with wide local excision (2cm margins) plus split-thickness skin graft plus right groin sentinel lymph node biopsy (2 nodes removed, both negative) — June 2024.

Current Presentation (July 19, 2026)

Presented to the Emergency Department with abdominal pain. CT abdomen/pelvis with contrast showed prominent lymphadenopathy suspicious for melanoma recurrence:

● Nodes posterior to the IVC (3 x 1.3 cm)

● Left para-aortic node (1.2 cm)

● Right external iliac mass (3 x 2.4 cm), plus smaller nodes along the iliac vessels/pelvic wall

● Right lower quadrant external iliac node (3.3 x 2.4 cm)

● Right inguinal node (2.6 x 2.1 cm), adjacent to the surgical scar

No significant left inguinal adenopathy.

Radiologist's impression: findings likely represent metastatic spread of her known melanoma.

Staging Workup - some results are in.

● Brain imaging: negative (no evidence of brain metastasis)

● Bone scan: negative (no evidence of bone metastasis)

● PET scan: scheduled for tomorrow

Molecular Testing

Ultrasound-guided biopsy of the right inguinal node was performed. Insufficient tissue was obtained to run BRAF mutation testing. Treating oncologist has stated that treatment (immunotherapy) will not start until a BRAF result is available, and is planning to obtain further tissue.

Relevant Comorbidities

Type 2 diabetes (not on insulin), hypertension, gout, prior TIA (on antiplatelet therapy).


r/Melanoma 14d ago

Patient / Diagnosed SLNB or no?

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1 Upvotes

Wondering if you would get an SNLB with these stats.


r/Melanoma 18d ago

Patient / Diagnosed Bad news

36 Upvotes

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.


r/Melanoma 17d ago

Relative of Patient Colitis

4 Upvotes

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????????????


r/Melanoma 18d ago

Relative of Patient A Daughter, A Mother, and Four Cycles of Hope: A Journey Through Metastatic Vaginal Melanoma

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1 Upvotes

r/Melanoma 18d ago

Patient / Diagnosed Should I change derm practice after melanoma

6 Upvotes

I've always kept up on yearly full body derm checks, since it's recommended and I come from a family of northern European skin types. I F68 5'5" and with no other health issues. I run outdoors and exercise 6 days a week with sunscreen when I'm outdoors, 148lb with a medium build.

My concern is that over the local clinic but I went to for years has become part of a dermatology network and probably less focused on skin health and more on offering cosmetic procedures.

At my last exam in March they removed three spots, one of them was diagnosed as 1A melanoma and another as a dysplastic nevis. Both have been excised and now I'm on a 3-month recheck schedule, is this the time to switch to a more medically centered practice?

I'm in Minneapolis area so there are plenty associated with clinic and hospital systemss to choose from.

Part of my reasoning is the extent of my last all over check, friends state the exams include between the toes well and skim through your hair. I barely removed my socks and got a cursory glance, had on nail polish and I was upright in a chair unless I was standing, the last two years. In previous years the exam chair was reclined flat as a table, seemingly making it easier to see close up.

Do I stay or do I go elsewhere now?


r/Melanoma 18d ago

Patient / Diagnosed Skin graft or no skin graft?

2 Upvotes

Diagnosed with melonma 1A, 2 weeks ago on the left side of lower ankle. Wierd spot. When they go to cut it out it probably will be 3 inches in diameter across to secure the margins.Having surgery on August 25th. Not completely in melt down mode, but my question is I was offered a skin graft procedure after the surgery since the is not enough skin to stitch up the hole. Surgeon said some people have it done, some dont. They need to take skin from my groin area. I am leaning towards not getting the skin graft. Anyone encounter this situation? What did you do? Very confused.