Melanoma what next?

[FangedFrisbee]

Noticed a weird mole next to a freckle in September, I will admit I thought it was a melanoma because it was right next to the freckle but it was 2 separate things.

Ignored it for a bit, then it my shoulder got unbelievably itchy one night and I needed to put some moisturiser on it, I took a photo in case it was a mozzy bite/ a spot. And noticed it was the mole that I'd noticed in September. It had grown so much and changed colour.

It was so big, I was so shocked. I went to the dr in November and he told me I was being over cautious until I showed the first photo. It really is so different, got referred to dermatology and had it chopped off. I got the call today it's melanoma and need a wide local excision to remove more. I also had 3 more on my leg removed and they were all melanoma too! I hadn't even noticed them!

I need some scans apparently, has anyone had this?

If I hadn't taken a photo in September, no one wouldve referred me based on 'it looks weird'

Take photos and have a record of any that look 'weird'

Also if you're ginger like I am who's parents routinely forgot to put more cream on me in 90s! Then, nhs photos of moles are so different to what mine looked like. So bare that in mind.

Please get any dodgy moles looked at.

From left to right is September, and the day before clinic on the 30th November. Then another one just zoomed in, if anyone is interested you can see the freckle next to it was bigger and now it's barely visible

Hi @FangedFrisbee im sorry to hear about your diagnosis. But hopefully you’ve caught it early by being vigilant and keeping pics.

The scans are for “staging” as they can only see the lesions on your skin and they need to ensure that the melanoma hasn’t spread to affect any other areas internally, or to deeper levels which might need different treatment than just wide excision. I hope all goes well with your staging investigations and treatment ❤️

@MrsMotts thank you so much for your comment that's actually really helpful. I think I'll step away from google but it's so hard !!

I think looking at the photos now it's very obvious! But it's silent isn't it?

Firstly, a big hug. That’s really shocking news to get, do you have people with you, who can support you?

If you’re on Facebook there is a group called Melanoma Mates who are very knowledgeable and very supportive. My knowledge is very dated, but that group will be able to give you the latest info.

@Randommother thank you, yes I have my husband, who is being really supportive and lovely. He's going to take me to the scans and pick me up from the little op I'm having. I'm having it at the theatre I work in so that's not awkward at all but at least they know I'm not skiving!

I'm going to have a look at that page! Thank you!

@FangedFrisbee so silent! and so easy to miss!
Definitely steer clear of Google! Once the scans are done, there will usually be an MDT meeting. At these meetings all the relevant people get together to figure out exactly what, where and how to treat. You should then be brought into clinic to discuss the next steps and plan of treatment and be given contact details of the specialist nurse team (if you haven’t had this already)

The group the PP mentioned sounds good too - it’s helpful to have a support network of people that have been through the same thing. X

Thank you both. I really appreciate it. Crazy how the brain goes crazy at 2 am!

Anyone else had this?

@FangedFrisbee 2am is the worst time. It feels like there’s no one else in the world awake! Hope you’re feeling ok. Dropping another message to hopefully give your thread a bump ❤️

I've had two melanomas. It's quite a shock, I hope you're coping ok. Melanoma mates is a great group, and if your staging comes back as stage 1 or 2, there's a great subgroup that I'm in which I've found better than the main one as the advice is more relevant. Wishing you all the best.

Avoid google and remember that the people posting on sites are the newly diagnosed and people who have continuing issues. There's a large invisible group of people for whom the removal and wide area excision do the job. Also - don't be surprised if a MacMillan nurse rocks up at the clinic where your surgery is done. It's routine in some places and they're there to support you.

Oh wow! I’m so sorry OP, thank goodness you took a picture of it - wishing you a speedy recovery.

Also thank you for pics, to me (a completely untrained medical person), it looked normal too! Definitely unlike the nhs pics.

Wish you a speedy recovery from any treatment you receive.

Hope the scans find limited progression of the cancer.

My mum was v dark skinned (I'm a redhead) and she never used sun beds or went abroad
She was having physio at the hospital and the physio saw a mole, said she didn't like the look of it and actually took her over to dermatology. They removed it there and then and it was melanoma

My mum has a melanoma removed last year and after a few scans she’s fine now. You’re right that doesn’t look like a typical one at all.

Hi, hope you had a better sleep last night xx

Hi op,
I am so sorry to hear of your recent new and I do wish you a speedy recovery. I was dropped the same bombshell 3 years ago on Friday, a day I will never forget. I had lymph nodes removed which was also positive for melanoma and I had a years targeted therapy. I have a pet scan to begin with which was thankfully clear. I now have routine skin checks, yearly cts and ultrasounds of lymph nodes every 3/4 months to monitor for changes. I found the initial shock very had to deal with. I feel very blessed now to be given a chance to continue my life and in some ways it has changed me for the better. I am more accepting, relaxed and I don’t sweat the small stuff any more. I recommend an app I use to monitor any moles freckles on your skin. It’s called Skin vision and I find it very good. Please mind yourself and stay positive. There have been such massive developments in melanoma treatments and I have a great feeling for you that all will be well x

@wellholygod it was that app that convinced me to book an appointment!!

Thanks all, I know it doesn't look like a typical melanoma but it is growing and changing. So anything like that is worth having a look. Also it itches like a bitch!

I'd recommend anyone use that SkinVision app tbh, it's peace of mind.

I'm coming to terms with it slowly, I have a few dates through for a pet scan and ct scan

Please don't ignore any thing that looks dodgy, or has changed to you. What a dr sees as 'normal' might not be your normal and you know your body better than anyone else.

I think a private mole check costs £100 and that's something I should have paid for!

@wellholygod I'm so glad you've got the all clear ! @sunflowerdaisyrose that's really helpful thank you!

@margegunderson that's a very good point to remember! It does feel so doom and gloom on those pages but it's because there is nowhere else to post. And people who don't need that support don't post. You're right!

FangedFrisbee well done for spotting it and chasing the doctor to get it taken seriously. Yours looks just like mine did (and your skin looks just like mine too - you look young still so it should heal well and not scar too bad). I ended up finding I had others as well and had to have a couple of wide locals and lymph node biopsy (which fortunately came back clear).
I am now all clear and nearly 10ys on.
You must be all over the place if you are still in early days - try to avoid too much Google but I know that's nearly impossible.
It is a proper head fry but where I have got to now is being really glad it was skin because you can see it. If I were ever to get another one I'd see it straight away whereas someone who has had lung cancer for eg doesn't have that luxury.
Best of luck for the wide local excision and book your DH in to look after you.

Well done for taking that picture. Dont forget to get the support from the specialist nurses, remember that's what they r there for and they will know the specifics of the trust where you will receive your care. Good luck.

@Greengagesnfennel just seen this, thank you so much. That's such a good story, it feels a bit big right now and obviously with Christmas and everything it's a bit of a wait. I've got a nurse now and I've emailed a couple of times

I've got a date now for my WLE. It's on the 18th of January. Initially I was happy because that's my rostered day off but having looked at the letter it will be done at the place I work. 🤦‍♀️🤦‍♀️ I think I'm going to have to tell them first! Also I'll need time off afterwards because of where it is if I move patients or pick up sets of instruments I'll rip the stitches out. Which I'm gonna say I one tiny positive about having my colleagues operate on me, they'll know I'm not making it up!!

The photo of it under the scanner thing was horrible. It didn't look like a normal mole, when I saw it I just wanted to rip it off me it was such a visceral reaction.

I'm going to document my 'journey' here I think

Please do let us know how you get on. I found that op to be bigger that what I had anticipated. I hadn’t expected a general anaesthetic and the recovery took longer than I had expected. I was naïve about it for sure. Anyway it’s a big step to putting it behind you.

This.

I've had a wide local excision and after a year or check ups was given the all clear.

Keep us updated OP