Page 4 | Melanoma what next?

FangedFrisbee · 2022-12-14T01:59:35+00:00

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.

Original poster

FangedFrisbee · 16/04/2023 14:16

@Matchingcollarandcuffs I was thinking about you recently wondering how your appointment went. Did you take your DH? I'm lucky that they just decided to do the biopsy of the other dodgy one at the same time as the wle.

I'm in pain today. Feel really tired and crap

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Original poster

FangedFrisbee · 16/04/2023 14:18

@Matchingcollarandcuffs the lymph node incision is way more painful than my wle. If you're having a sentinel lymph node biopsy and your lymph nodes are under your arm then I'd recommend getting a mastectomy heart pillow because the pressure against the stitches is helpful for the pain

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Matchingcollarandcuffs · 16/04/2023 16:40

Owww poor you that sounds so sore, thing with arms is you’re always moving them. Really hope it starts improving soon.

DH for come, the nurse (‘specialist nurse’) called me rather than the Dr called me in and said to DH to come in too, so knew they were going to say melanoma, just the stage I didn’t know. The dr only checked my lymph manually and the nurse has given me links to you tube videos to learn how to do it monthly for the next year, but I am hoping that the private dr may want to at least do a scan soon as I potentially have 2/3 melanomas (1 confirmed on head, 1 suspected on back, 1 possible on leg).

Was out at a stately home with DH today and was paranoid about being in the sun, I’m losing my hair anyway so need to get scarves etc to cover my scalp and biopsy scars. I expect over time can relax into being outside more but currently it’s horrid as an just so fearful that more of my many many moles will turn malignant too.

A friends is about to start immunotherapy for secondary cancer and they’ve offered her a place on a trial augmenting it with chemo and a new drug, have you had discussions about what /when your regime will be ?

Thank you so much for the kindness you are showing me, I’ve got teens doing GCSEs and A levels so not saying anything to them, so as a consequence not talking to DH much so it really helps having you to talk here.

Mimosa08 · 16/04/2023 17:06

Matchingcollarandcuffs · 16/04/2023 16:40

Owww poor you that sounds so sore, thing with arms is you’re always moving them. Really hope it starts improving soon.

DH for come, the nurse (‘specialist nurse’) called me rather than the Dr called me in and said to DH to come in too, so knew they were going to say melanoma, just the stage I didn’t know. The dr only checked my lymph manually and the nurse has given me links to you tube videos to learn how to do it monthly for the next year, but I am hoping that the private dr may want to at least do a scan soon as I potentially have 2/3 melanomas (1 confirmed on head, 1 suspected on back, 1 possible on leg).

Was out at a stately home with DH today and was paranoid about being in the sun, I’m losing my hair anyway so need to get scarves etc to cover my scalp and biopsy scars. I expect over time can relax into being outside more but currently it’s horrid as an just so fearful that more of my many many moles will turn malignant too.

A friends is about to start immunotherapy for secondary cancer and they’ve offered her a place on a trial augmenting it with chemo and a new drug, have you had discussions about what /when your regime will be ?

Thank you so much for the kindness you are showing me, I’ve got teens doing GCSEs and A levels so not saying anything to them, so as a consequence not talking to DH much so it really helps having you to talk here.

Can I ask what the melanoma on your head is like/looks like?
Been referred
Appointment on Tuesday 6 days after Dr Appointment :(
Hope you're OK op x

Matchingcollarandcuffs · 16/04/2023 17:12

It was just a new freckle just in my hair near my temple, that quickly turned into a large age spot mark, was quite fair and flat but asymmetric and was growing quickly.

GP wasn’t going to refer, and second only did cos they couldn’t be 100% but the first Derm (under the urgent cancer pathway) felt it wasn’t cancerous but still should be removed as precaution so biopsy wait was 6 months, during which time it doubled in size.

Hope you’re ok

Mimosa08 · 16/04/2023 17:22

Matchingcollarandcuffs · 16/04/2023 17:12

It was just a new freckle just in my hair near my temple, that quickly turned into a large age spot mark, was quite fair and flat but asymmetric and was growing quickly.

GP wasn’t going to refer, and second only did cos they couldn’t be 100% but the first Derm (under the urgent cancer pathway) felt it wasn’t cancerous but still should be removed as precaution so biopsy wait was 6 months, during which time it doubled in size.

Hope you’re ok

I'm sorry to hear your diagnosis
I have a lump but Dr had no idea so referred me
I had a mole removed on my back 18 months ago which was benign
Am also very moley

Original poster

FangedFrisbee · 16/04/2023 22:22

Matchingcollarandcuffs · 16/04/2023 16:40

Owww poor you that sounds so sore, thing with arms is you’re always moving them. Really hope it starts improving soon.

DH for come, the nurse (‘specialist nurse’) called me rather than the Dr called me in and said to DH to come in too, so knew they were going to say melanoma, just the stage I didn’t know. The dr only checked my lymph manually and the nurse has given me links to you tube videos to learn how to do it monthly for the next year, but I am hoping that the private dr may want to at least do a scan soon as I potentially have 2/3 melanomas (1 confirmed on head, 1 suspected on back, 1 possible on leg).

Was out at a stately home with DH today and was paranoid about being in the sun, I’m losing my hair anyway so need to get scarves etc to cover my scalp and biopsy scars. I expect over time can relax into being outside more but currently it’s horrid as an just so fearful that more of my many many moles will turn malignant too.

A friends is about to start immunotherapy for secondary cancer and they’ve offered her a place on a trial augmenting it with chemo and a new drug, have you had discussions about what /when your regime will be ?

Thank you so much for the kindness you are showing me, I’ve got teens doing GCSEs and A levels so not saying anything to them, so as a consequence not talking to DH much so it really helps having you to talk here.

I'm glad you had his support. You can ask any questions!

I don't know what my regime will be yet because I don't know if it's Braf+ or negative yet. I think its positive then I'm eligible for some targeted therapy (chemo) and then the immunotherapy if not then just the immunotherapy. It's very overwhelming I'm not going to lie but it needs to be done

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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?

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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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

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.

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!

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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

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!

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

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 🤦‍♀️.

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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?

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

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

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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.

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.

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.

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)!

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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)!

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Of course not!

Matchingcollarandcuffs · 08/05/2023 16:52

How are you getting on @FangedFrisbee ?

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!

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