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Original poster

Melanoma what next?

108 replies

FangedFrisbee · 14/12/2022 01:59

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.

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PuppyFeet · 22/12/2022 07:57

Greengagesnfennel · 15/12/2022 21:13

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.

I don’t want to scare you but please don’t assume that because melanoma is under the heading of skin cancer that you can always see it. You can’t. It can spread and return as tumours inside, so please ensure that anything odd is checked out quickly… Melanoma is sneaky, not obvious. I speak from experience.

Original poster
FangedFrisbee · 23/12/2022 01:10

@PuppyFeet thank you for the heads up I will check any and all lumps and bumps you're so right x hope you're okay

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Original poster
FangedFrisbee · 23/12/2022 01:13

wellholygod · 22/12/2022 05:55

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.

I hope you're okay. It is a big operation Isn't it? I think its the media tbh 'oh it's skin cancer or it's just a mole and chop it off and its gone' etc. but depending on where it is and if they get a clear margin first time it could be a very big operation.

I've been referred to the Christie today not my hospital which is a relief. I used to work there and they're all lovely. It's a relief because they're amazing at what they do and the results for most of the nw hospitals are sent there anyway so I'm happy it's there!

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sunflowerdaisyrose · 26/12/2022 23:22

Mine was both a life changing and life saving op as, due the position of the melanomas, I lost the thumb of my dominant hand. However, I have managed to stay optimistic and grateful it wasn't more advanced. I'm glad you're happy with where you have been referred to.

Ellacska · 19/01/2023 12:45

Thats great you took a photo ! I'm glad you got them catched early.

I have a changing one too, It was a new mole in July, so I took a photo , and just remembered to take a photo in December again, it has grown. I wait a bit more if it's growing more, as I'm not sure if it is a mole or just some pigment.

Melanoma what next?
Original poster
FangedFrisbee · 19/01/2023 13:20

@Ellacska I'd get that looked at

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Dancebabydance123 · 19/01/2023 14:28

Get it checked out asap

Ellacska · 19/01/2023 16:51

Dancebabydance123 · 19/01/2023 14:28

Get it checked out asap

I will book appointment with the GP.

Ellacska · 19/01/2023 16:52

FangedFrisbee · 19/01/2023 13:20

@Ellacska I'd get that looked at

I was thinking to wait a few months if is growing more, but might go soon , I just don't want to be annoying to go with a little mole 😏

familyissues12345 · 19/01/2023 17:04

FangedFrisbee · 15/12/2022 08:11

@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!

Skin vision is fantastic, it spotted my melanoma and then I got constant emails from them checking I'd had it checked. I now have reminder emails to upload any photos of any concerning moles.

I think I owe my life to that app!

catfunk · 20/01/2023 20:50

Hi @FangedFrisbee mind if I join you?
I'm having a wide excision in 4 weeks, likely with a graft and a lymph node biopsy at the same time.
Although I got referred quickly from my GP my initial surgery to remove the mole was back in July so it's been a bit of a long process !

If you have any Qs feel free to ask x

catfunk · 20/01/2023 21:33

Also op, when they say you need 'scans' they may be referring to locating the nearest the lymph nodes - have they mentioned that?

Original poster
FangedFrisbee · 20/01/2023 22:41

@catfunk welcome to the club no one wants to be in! I needed a pet scan to make sure it hadn't spread anywhere else because my dad had a genetic form of skin cancer and they were waiting for my genetic testing. Xx

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Original poster
FangedFrisbee · 25/01/2023 10:39

I feel very anxious today, they said they'd write to me about the results but I've just had a request to book an appointment face to face tomorrow morning

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Original poster
FangedFrisbee · 26/01/2023 21:32

I was stage 3. I need another op to remove lymph nodes

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Wtf2023 · 26/01/2023 21:47

I am so sorry to hear this fangedfrisbee. I was the same as you,stage 3. Please please stay off google. Most of the info is very outdated and would scare you. Every case is different I am sure. I had the lymph nodes removed same time as the wider excision I then did a years target therapy following my surgery and now have 3 years under my belt with clear scans. All will be well, please try and keep calm and positive.

Fairycake89 · 26/01/2023 22:06

Hi ,

I too was diagnosed with melanoma back in 2019. Had wide local excision which came back with positive margins. 6 month later it grew back in my scar and was now stage 3. Had 1 year of pembrolizumab immunotherapy after positive lymph nodes.

now all clear , 3 monthly CT of chest, 3 monthly MRI of brain and abdo & pelvis

sending love

this disease is cruel

xx

Original poster
FangedFrisbee · 27/01/2023 00:26

Wtf2023 · 26/01/2023 21:47

I am so sorry to hear this fangedfrisbee. I was the same as you,stage 3. Please please stay off google. Most of the info is very outdated and would scare you. Every case is different I am sure. I had the lymph nodes removed same time as the wider excision I then did a years target therapy following my surgery and now have 3 years under my belt with clear scans. All will be well, please try and keep calm and positive.

Thank you so much xx it feels like a nightmare

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Original poster
FangedFrisbee · 27/01/2023 00:27

Fairycake89 · 26/01/2023 22:06

Hi ,

I too was diagnosed with melanoma back in 2019. Had wide local excision which came back with positive margins. 6 month later it grew back in my scar and was now stage 3. Had 1 year of pembrolizumab immunotherapy after positive lymph nodes.

now all clear , 3 monthly CT of chest, 3 monthly MRI of brain and abdo & pelvis

sending love

this disease is cruel

xx

It really is isn't it xx

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familyissues12345 · 27/01/2023 09:44

FangedFrisbee · 26/01/2023 21:32

I was stage 3. I need another op to remove lymph nodes

Oh sorry to hear you've had crappy news Sad

IhearyouClemFandango · 27/01/2023 09:51

Have they talked to you about immunotherapy? My sister had a melanoma removed a few years ago but no scans etc done. She then had another mole last year, when they scanned they found it was a secondary and she was stage 4 with small melanoma in lymph nodes in her groin, her breast and lung.

She was started on immunotherapy very quickly and I shit you not, the tumours disappeared. They thought she would need a year's worth but it turned out to be unnecessary. She still has MRI and CAT scans done every other month or thereabouts and had some side effects but has recently gone back to work etc.

Apparently immunotherapy is proving to be game changing with melanom

Bearpawk · 21/03/2023 07:27

Hi @FangedFrisbee how are you doing? Have you had your lymph dissection yet ?
Sending best wishes x

georgarina · 21/03/2023 07:43

Good luck OP xxx
I had two moles removed as a teenager. They were growing, became asymmetrical, and started itching, peeling and bleeding. I had them removed and never had any more problems x

Bearpawk · 05/04/2023 23:33

Hi @FangedFrisbee not sure if you're still visiting this thread but I hope you're ok x

Original poster
FangedFrisbee · 06/04/2023 13:29

@Bearpawk thank you. I've got another surgery next week to take some more away because the initial wle I had didn't get clear margins with another melanoma being found deep down.

I've also got one on the other side of my neck so that will be dealt with at the same time.

Thank you for asking x

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