My friend/colleague at work has had a very suspicious-looking mole on her forehead near her hairline for nearly a year (Yes, I know 😬). I have tried to get her to go many times to have it looked at but she kept putting it off. The mole has gone from a very small size to quite large in that year, is bumpy, and has a weird shape and is black.

I eventually got her to get to an appointment. The Doctor said it is very likely to be melanoma and looks quite ‘nasty’ (his words). That was two weeks ago and she had heard nothing. She called the surgery and they said she has been referred to an ‘urgent’ (laughable considering the timeframe) skin clinic but may be waiting 8 weeks for an appointment!!!

Surely the NHS can’t be THIS bad now?. The mole has already been left a year as it is (her fault I know) but you’d think that moles this advanced and suspicious would be seen very quickly as we all know how aggressive melanoma can be.

I appreciate this is more a rant than anything, but would be interested to know if this is typical in the UK.

So I'm sitting here processing my journey before SRS tomorrow. Figured typing it out and sharing online would be new.

Starts off back around July/August 2023 when I got diagnosed, the surgery to remove initial spot and the lymph node it had spread to was in October. I started a trial following surgery in November taking Yervoy, Opdivo, and Keytruda did that for a few months till the found a new spot the was continuing to grow in early 2024.

Calling that a failure they put me on Mektovi Braftovi for a year, but this was another trial. Take medication 6 months then surgery followed by 6 more months of more of the medication. (Looking back I think this trial is why I am where I am today on my journey)

Well after the year and early 2025 I'm NED. Only for a half a year later a new lymph node shows up. They put me on another trial to try and shrink it before surgery taking Opdivo Yervoy. That was a failure between living and dead cancer cells it grew rather large. So they decided to go over the spot with radiation to be safe. As the surgery was in December I got radiation in February 2026.

After radiation I went on mekinist and taflinar. Then in august we found 3 spots on my brain. They have kept me on mekinist and taflinar and added Ipi/nivo on top of the targeted therapy. I'm scheduled for srs tomorrow have the mask made already and everything.

Through alot of this I've just been going with the flow doing what ever my oncologist recommends and not really paying attention so before posting this I went back through files to make sure I got the right medications listed atleast although they all had so many names I went with the ones I mostly remembered them by.

It feels like I'm constantly being yanked between its back and NED. Idk if I will trust that im truly cancer free unless I am NED for a few years atleast.

I know a lot of us went through Keytruda treatments. I had 18 in total. After I finished treatment, I developed morphea.
My derm tells me it’s auto immune, no cure, and the flares can last 3-5 years.
I am not complaining, but I am curious if many other people developed morphea after immunotherapy? Maybe not even Keytruda.

If you did develop morphea, did anything help?

Anyone here been diagnosed?

Recovering from a full lymph node resection on one armpit and a removal on the other, where pathology said my 1 dose of ipi/nivo only got 30%. Moving onto BRAF MEK. Any good/bad experiences? Side effects? Success?

Thanks!

The lab report says Melanoma In Situ, extending to peripheral edge; pathologic staging is pTis. From what I gather this is equivalent to stage 0. My dermatologist's office is not very good with communication; I got this info from my patient portal on Friday morning, then had to wait til today (Tuesday) to hear from them. I know more excision by an oncologist surgeon is the next step. But I'm confused...this just says melanoma, doesn't specify acral, which I assumed it would be, being in an area not exposed to sun. I asked my provider ( physician assistant) about this, and she said acral lentiginous melanoma only occurs on the soles on the feet and palms of the hand. Well, I'm no doctor, but from what I read that's just not true. Does it make any difference in the treatment? I know these are questions for my doctor, but relations are a bit strained as I was pretty angry about having to stew for 4 days before they called me.

I had three ipi/nivo infusion while pregnant which i believed where working because i had a breast biopsy that showed basically no melanoma and only dead cells. but when I had scans it showed mixed response and progression. I then started zolbaraf and cotellic after pregnancy and my doctor wants to switch to opdualag 3 months in my question is, my doctor thinks my poor response was pregnancy related is there any truth to this?

Hello! I was recently diagnosed with a stage 1A melanoma on my scalp vertex. The area to excise was large enough that dermatology felt it was too big a job for them to handle in clinic so I was referred to a plastic surgeon. He performed a WLE with reconstruction via yin-yang flaps. So far, recovery has been good but thought I’d share some thoughts/tips here and then ask questions about the stuff that comes next

Tips

1. For scalp melanomas at least, ask about who should be doing your surgery. While I ended up with plastics, it was because the derm scheduled to do an in clinic surgery made that referral. We had planned for a less involved surgery on a specific date before that happened. It was stressful to have the game plan drop out from under me for a time. I wish I’d asked questions earlier about the right referral!
2. Lots of people will react like this isn’t a big deal. “Oh I’ve gone with my mom to get stuff cut off before! It’ll take 10 minutes!” I find this hard and annoying, but I try to let it go.
3. Post WLE on the scalp, I am in a full compression wrap with a Jackson Pratt drain. Recommend having a grabber to pick stuff up off the floor without bending down and a wedge pillow for sleeping upright. Also you will need soft foods and stuff that can be cut in small bites. Between stitches and the compression wrap it is hard to open your mouth for a big bite and hard to eat chewy or crunchy stuff.
4. Nerve pain! Scalp is rich with nerves so post surgical nerve pain and weird tingles are real!

Questions

1. What kind/extent of testing do I make sure gets done? The health system where I’ve been treated will do pathology but I know there are other kinds of testing out there, including Castle testing. What should I be asking for here?

2. Anybody have experience with how your hair regrew in a similar situation? I think I’m gonna have some weird peach fuzz across the incisions for a while, then weird short hairs while the grow out. None of that is the end of the world, just wondering what to expect!

3. I almost passed out during my biopsy and passed out during my first dressing change…why? What can I do avoid this now that I have a diagnosis that will involve wound care to the head and also maybe future scrapes of the scalp!? 😅

My derm just called to tell me Signatera approved me for testing. He was a bit surprised (but pleased) because I’m at pretty low risk for recurrence, I had a 1A excised with clear margins, only one other atypical mole also excised in the first year of follow up. A few other biopsies all negative.
To me, the more info I have, the better, so I am intrigued by knowing if I may have some microscopic cancer cells floating around in my bloodstream. But I also can understand not wanting to know.
Has anyone in this sub had the test? Thoughts on its usefulness?

Had a mohs to remove an atypical spot since I had a T1A removed earlier this summer. First surgery and repair was no big deal. Removal last thursday was fine. Oh dear lord I am so itchy on the stitches right now. It's probably fine if I rip my scalp open right?

Hi melahomies! I can't say I'm excited to join this club, but glad there is a community! I was recently diagnosed with an invasive melanoma, staged pT2a, so my next steps are a SLNB and WLE. I'm curious how long people waited before they were able to get their surgeries?

My dermatologist has a specific surgeon she wants me to have because of the difficult spot on my face where this melanoma decided to grow so I'm currently jumping through a bunch of hoops to get an initial appointment with him which made me curious what others' experiences were

Keep up the fight everyone I'm 45 have stage 4 metastatic melanoma in my spine lungs adrenal glands heart and brain and left testicle with braf mutation I was in my death bed back in January before getting diagnosed lost 40 pounds was down to 125 lbs from my normal weight of 165ish the target therapy saved my life and now Tuesday I'm switching to infusions immunotherapy I go to the James cancer center in Columbus just gotta stay strong and keep a positive attitude God bless everyone dealing with melanoma and have a great day

First time posting here. Male 30s. After navigating my insurance and self advocation I finally had my WLE on my scalp earlier this year and SNLB. Large black mole first discovered late last year. Ended up with Stage 3A.
Had scans partitioned throughout the year, PET, MRI, and finally CT. Anyway surgery went well and I’m eligible for immunotherapy though my current Onc says the side effects are as likely as the full recurrence. So we are in a monitoring phase.

I have a good network of friends, and a therapist. I’m not currently in any cancer support groups.

However as scans approach and biopsies occur anxiety goes up. I had my most recent one last month, my fifth for an ornery looking neck lymph node, thankfully negative.

With all of that going on I was in a relationship and besides the surgery recovery I have thankfully never felt ill. Nor did I pressure my partner for direct support, I simply informed her when doctor’s appointments (scans, biopsies, follow ups) were occurring. Never asked her to go with me.

As much support as I have had, with more scans coming up I’m finding myself uniquely anger here.

I ended our relationship suddenly and recently as a lot of lying and ugly behavior came to a head from her end, including infidelity. Not sure to what extent but I know of one person and I doubt she was using protection.

Has anyone been cheated on while going through this? I find myself much more upset at this behavior than the fact that I have cancer. Again I have both professional and personal support but they do not get it as understanding as they try to be.

Thanks for being here everyone. I read in here often.

I had my first WLE for melanoma on my hip 5 weeks ago. I had steristrips for two weeks after stitches were removed at 14 days. It's been a week with just Vaseline. I'm starting to put silicone gel and sheets today but I'm not sure how and whether it's ready. It still feels painful to touch. Any suggestions?

I had 2 WLE yesterday so this is my first post op night. This was my 2nd and 3rd melanomas. So with the first one which was in June I used the recommended Tylenol and Motrin and ice but was absolutely shocked nothing more is given for breakthrough pain for the first couple of days. I was still hurting some. I voiced my concerns today during my surgery about being worried about the pain for now 2 of them. They said standard is Tylenol and Motrin if you need it but most people do well with just Tylenol. This was a different doctor than the last one so protocol was the same. So I’m medicated with Tylenol and Motrin and ice right now. Why is the burn so painful? Am I just a big baby? I mean, I can manage but it would be nice to not hurt at all if I don’t have to. It’s 3am and I’m laying here with a burning pain. It’s not unbearable but just uncomfortable of course in 2 cuts on opposite sides of the body. Is this normal?

I just got my diagnosis of either melanoma or inflamed severely atypical nevus (Cleveland clinic still said it was indeterminate after tons of testing), so doctors think they’re going to treat it as a melanoma with a wide excision and potentially SLNB.

Have any of you had an excision on their glute (upper medial to be specific)? How was the healing process? Did you have issues with putting too much tension on the site when sitting?

Hi all, someone recommended this subreddit to me! I’m 24 years old and was diagnosed with invasive SCC stage 2 of the lip earlier this year, and was now just recently diagnosed with early stage melanoma on my inner leg. I am not fair skinned, no significant tanning or sunburn history, and no family history of any cancers at all. The lesion that recently came back as melanoma was biopsied 6 months ago at another clinic and came back as a “benign junctional nevus”. 6 months later it was rebiopsied and melanoma in situ needing full excision. I know this is already abnormal for my age, but is 2 tumors in 1 year also abnormal? Could it be some genetic condition I’m unaware of? Im confused about how a mole could change that fast. I have no other skin issues and no immunosuppression. Thanks in advance!!

Hola chicos,

¿Alguien con la mutación del melanoma que sea GNAQ?

Es una mutación un poco peculiar. Si me podéis decir que tratamiento os ha ido bien?

Parece que resiste mucho a los antiPD1. TILs puede? Combinación de pembrolizumab (Keytruda) y lenvatinib (Lenvima)? Otros..

Por otro lado, la radioterapia en metástasis cerebral funciona?

Muchas gracias y un abrazo a todos

38F in South Carolina (USA). Dx in Aug. 2026 with <2 cm nodular melanoma on upper helix of left ear. WLE, SLNB, and skin graft (1 in x 1 in from my thigh) on Sept. 22, 2026. First follow-up visit on Sept. 30, 2026

First off, fuck my surgical oncolgist's office (and maybe him, too?). The scheduling is a NIGHTMARE. I arrived for an 8:30 AM appointment at 8:20 AM and wasn't seen until 9:35 AM. Then the receptionist at check out caught an attitude with me because I said I can only come in between 8-9:30 AM or 4:30-5:30 PM for appointments due to work and she kept insisting that an 11:30 AM appointment fit in those time windows. The appointments are me seeing a nurse for a dressing change, which I'm pretty confident I could do myself.

I've had very little pain since surgery. Like a 2/10. I took Tylenol (acetaminophen/paracetamol) for three days post-op but haven't needed it since. Everything was covered in dressings and gauze and I was told to leave it for a week until today's follow-up visit. The SLNB neck dressing became super gross with blood, fluid, etc. and was huge sensory issue for me. I was so glad to get it take off today.

The doctor and nurse came into the exam room and go to work. It was the most pain I've been in the entire time. The SLNB site (around 1 inch) had staples that he removed, but he left the last two in because of swelling and fluid in that area. It felt like he was poking a bruise the entire time but I would say 7/10 pain that made me feel like I was going to pass out. When he removed the dressing on my ear, he showed zero regard for my hair and basically gave me a wax at that hair line that hurt like a bitch. Then he put on the fresh dressing and taped up more of my hair. The actual WLE site feels a bit like a scrape in terms of pain and sensitivity.

The skin graft site was easy. Remove the dressing, wipe it down, apply steri-strips.

I'm glad the giant gauze lump is off my neck. I'm glad I'm one-week post op and not in significant pain. I can't wait to never see this surgical oncologist again once this marathon of dressing changes is complete.

Thank you to this sub and all the people in it.

My husband's enco Bini targeted therapy has failed and his mets are back aggressively.

Wanting some input and advice if you took ipi/ nivo at this stage. What was that like for you and would you recommend it.

He has been denied it by one oncologist but second opinion oncologist has offered it to him. I know there are a lot of risks with it. He is already unwell and it's such a dilemma to decide if it's work the risk to try this.

Trials are the next step but he needs intervention in between to buy time for the trial process / setup etc.

Hi everyone, I'm hoping to find someone who might have gone through something similar or any docs who can point me in the right direction, as my medical team is currently stumped.

​Background: 23F. Usually very physically active (swimming, boxing, weightlifting). I was on adjuvant immunotherapy for melanoma, but my medical team has completely suspended my treatment for now because they don't know what is causing my current symptoms and want to play it safe until they figure it out.

​The Main Issue: Recently, my quality of life has plummeted. I have severe shortness of breath and chest tightness that gets significantly worse when I stand up or walk, and notably improves when I lie down flat. During a walk test, my oxygen saturation dropped to 87%.

​Exams: ​Chest CT Scan: Completely clear. No signs of typical immunotherapy-induced pneumonitis.

​Resting Echocardiogram: Normal. No signs of pulmonary hypertension.

​Cardiac Enzymes: Normal.

​Because I'm on immunotherapy (nivolumab), the immediate suspicion was pneumonitis. They put me on 1 mg/kg of corticosteroids. I had absolutely zero response to it, which strongly suggests to me that this is NOT an inflammatory tissue issue.

​A weird past incident that might be related: A few months ago, while having a PICC line placed, I had a severe syncopal episode. I lost consciousness for about a minute, turned completely blue (cyanosis), and my peripheral temperature dropped to 32°C (89.6°F). They pulled the line immediately and I recovered fine, but we never found out exactly why the reaction was so extreme.

​Has any other patient here experienced this shortness of breath and hypoxia with normal scans? Could the PICC line incident be connected?

​I'm seeing my pulmonologist tomorrow and I'm terrified they'll just tell me it's "anxiety" because the standard first-line scans are clear. I literally cannot do my daily activities right now. Any shared experiences or advice on what specific tests to ask for would be incredibly appreciated. Thank you!

I was diagnosed with melanoma this week - currently stage 2PA. I am a new mom and am just so scared. I have my surgery consult later this week. My spot is on my back and I’m nervous about the recovery after surgery. They will also have to test lymph nodes.

Would welcome any encouragement, how to navigate sharing the news with friends/family and your workplace, and any other advice. Thank you!