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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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Heartsdesire82 · 22/02/2024 21:41

Hello OP, how are you doing now? ☺️

Horseskeepmesane · 03/11/2023 14:18

How are you getting on Fanged?

I am very moly and have had 1 early melanoma removed before plus now in the2 week pathway again for another.

I used to sunbathe and now I feel like I am paying for it. I’ve always been outside, I am so concerned that as a very moly person how can we tell if they are all dangerous or not? I wasn’t even mole mapped after my first diagnosis x

Getupat8amnow · 08/09/2023 08:09

Please can I join this thread? My cousin has been diagnosed with stage 3 melanoma. She is having a pet scan and neck biopsy today. It all started with a mole check in May 2023 and two operations, biopsies and scans later she is at this point, she is young with a small child.

PuppyFeet · 08/06/2023 07:50

@FangedFrisbee I’m so sorry to hear your news, melanoma is an insidious beast. To give you a glimmer of light, speaking from experience ipi/nivo and other immunos are game changers and can work quickly and effectively. I wish you well with your treatment. Rest, eat well and moisturise!

Bearpawk · 07/06/2023 20:46

Oh @FangedFrisbee that's such a lot for you to take in. One day at a time. Fingers crossed the immuno does its job, have you had your first cycle yet ? X

Matchingcollarandcuffs · 06/06/2023 16:50

Ooof, that’s such a lot. Sorry to hear the staging has moved on too, hope the side effects of the combined treatment aren’t too awful

Original poster
FangedFrisbee · 06/06/2023 13:15

Matchingcollarandcuffs · 06/06/2023 12:58

Oh no, so sorry to hear that. How much did they remove in the end?

All my lymph nodes under my left arm, a margin of 2cm around my shoulder biopsy scar leaving a scar about 4 inches long, and a biopsy of another melanoma on my neck. 3 lymph nodes were positive for cancer and I have tumours in my lung and liver. Found during staging scans. I'm now on a combined immunotherapy.

OP posts:
Matchingcollarandcuffs · 06/06/2023 12:58

Oh no, so sorry to hear that. How much did they remove in the end?

Original poster
FangedFrisbee · 06/06/2023 12:33

Hi everyone, sorry I've been MIA, the surgery was so much more intense than I anticipated and the recovery has been very slow.

I found a couple of weeks ago that due to the delay between surgery recovery and starting immunotherapy I have actually progressed to stage 4. I've got a lot of anxiety about this but I started immunotherapy yesterday and hopefully it works!

OP posts:
Matchingcollarandcuffs · 08/05/2023 16:52

How are you getting on @FangedFrisbee ?

PuppyFeet · 19/04/2023 12:50

FangedFrisbee · 19/04/2023 09:41

Agreed it is a great group. (If you recognise my photos/ postings please don't out me)!

Show quote history

Of course not!

Original poster
FangedFrisbee · 19/04/2023 09:41

PuppyFeet · 19/04/2023 09:28

If those of you who are dealing with Melanoma would like more support there is a Facebook group called Melanomamates. Additionally for those who are stage 4 ‘Melanoma Stage 4 Support Group’ is also available.
Both are private groups and are very friendly and helpful. Melanomamates is heavily monitored by some incredibly knowledgable and helpful people who make sure there’s no rubbish or non verified research put forward.

I started my stage 4 journey in 2021 and felt very alone and then joined melanomamates and found it very helpful and supportive.

Agreed it is a great group. (If you recognise my photos/ postings please don't out me)!

OP posts:
RudsyFarmer · 19/04/2023 09:37

FangedFrisbee · 15/04/2023 19:00

This was the second primary melanoma they removed this week. Please get anything dodgy checked out

I have several moles on me that look like this. I’m honestly so shocked by this thread and I’m so sorry you’re going through this. None of these moles would have caused me any concern at all looking at them. I’m off to download that app.

PuppyFeet · 19/04/2023 09:28

If those of you who are dealing with Melanoma would like more support there is a Facebook group called Melanomamates. Additionally for those who are stage 4 ‘Melanoma Stage 4 Support Group’ is also available.
Both are private groups and are very friendly and helpful. Melanomamates is heavily monitored by some incredibly knowledgable and helpful people who make sure there’s no rubbish or non verified research put forward.

I started my stage 4 journey in 2021 and felt very alone and then joined melanomamates and found it very helpful and supportive.

BlueAndGreen89 · 18/04/2023 19:42

Matchingcollarandcuffs my mole sounds exactly as you’ve described yours. I don’t want to self-diagnose but I’m prepared to be told it’s something that will need investigating. I’ll be sticking with this thread too please. Had my dr appointment yesterday and been referred so now waiting to hear from dermatology at the hospital in the next couple of weeks.

OP I hope you’re feeling a little more comfortable with the help of your new pillow.

Original poster
FangedFrisbee · 18/04/2023 09:55

Matchingcollarandcuffs · 18/04/2023 08:28

Ow you poor thing - lovely of DH to wash your hair though - I bet he's just glad he can do something to help.

Will they biopsy the lymph glands they've removed?

Yeah, they will test them all for cancer. I'm a bit of an odd one though because I had a very swollen lymph node that I had a fine needle aspiration on and that showed microscopic spread so I already know one of them has cancer in it.

My mastectomy pillow arrived today and is giving a lot of relief on the lymph node site! I need a lot of pressure on the area

OP posts:
Cece92 · 18/04/2023 09:17

I have no advise OP but I really wish you well. I am the same age as you and your right cancer doesn't know anyone's age. My mum works in a cancer pharmacy and she gets extremely upset when she sees younger patients in as she just thinks about me and my younger sister. She loves her job but this is definitely the hardest part for her. Hoping for some good news for you xx

Matchingcollarandcuffs · 18/04/2023 08:28

Ow you poor thing - lovely of DH to wash your hair though - I bet he's just glad he can do something to help.

Will they biopsy the lymph glands they've removed?

Original poster
FangedFrisbee · 17/04/2023 23:39

It's been a hard pain day today . I had a shower and my DH washed my hair. I still can't move my arm above my head. It hurts a lot.

I feel like having a pity party today, but tomorrow should be better 🤦‍♀️.

OP posts:
IhearyouClemFandango · 17/04/2023 18:50

FangedFrisbee · 17/04/2023 14:23

@IhearyouClemFandango wow! That's amazing! It was my birthday last week on the surgery day (31) and all I got was 'oh you're so young' well cancer doesn't know my age!

Show quote history

It doesn't, and it doesn't help to be made to feel unusual either I would imagine!

Mimosa08 · 17/04/2023 18:38

IhearyouClemFandango · 17/04/2023 14:13

I don’t know if this helps encourage anyone, but my sister (mentioned above) who was diagnosed with stage 4 melanoma last year at 38 is now a year on and still completely cancer free after one dose of immunotherapy. 🤞 all goes smoothly for you all.

So pleased for your sister x

Original poster
FangedFrisbee · 17/04/2023 14:23

IhearyouClemFandango · 17/04/2023 14:13

I don’t know if this helps encourage anyone, but my sister (mentioned above) who was diagnosed with stage 4 melanoma last year at 38 is now a year on and still completely cancer free after one dose of immunotherapy. 🤞 all goes smoothly for you all.

@IhearyouClemFandango wow! That's amazing! It was my birthday last week on the surgery day (31) and all I got was 'oh you're so young' well cancer doesn't know my age!

OP posts:
IhearyouClemFandango · 17/04/2023 14:13

I don’t know if this helps encourage anyone, but my sister (mentioned above) who was diagnosed with stage 4 melanoma last year at 38 is now a year on and still completely cancer free after one dose of immunotherapy. 🤞 all goes smoothly for you all.

Bearpawk · 17/04/2023 13:45

I've mentioned before on this thread but worth a read for those of us embarking upon immunotherapy xx

www.kcl.ac.uk/news/healthy-gut-microbiome-improves-success-of-cancer-treatment

Original poster
FangedFrisbee · 17/04/2023 13:14

Matchingcollarandcuffs · 17/04/2023 08:57

Hmm - did you find you 'found' more dodgy moles after your appt? I've got 2 more that I think are suss now I look, one especially has definitely doubled in size . .

How long for your BRAF results? I am guessing + is more hopeful due to targeted treatment?

Yes I found the 2 dodgy ones after my initial appointment. I spoke to my skin cancer nurse who talked to the Christie and by the time I got home from seeing my skin cancer nurse they'd added the removal of the dodgy looking ones onto the wle surgery. Very efficient.

Braf+ is 'better' yes!

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