Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Has anyone had stage 1b which has spread to their lymph nodes?

MH20
Posted by

Just as the title says really... 

Has anyone had stage 1B melanoma that has spread to lymph nodes? I’m simply curious about what happened? What your 1B melanoma was like? (mines is only 0.9mm thick but shows regression so they don’t know how but it was originally) What happened when you found out it spread? What treatments are you / have you had? 
I’d like to prepare for the worst so that if it comes back clear I’m happy but if it doesn’t then I’m not shocked. 
MH20

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

Margarita2019
Posted by

Hi. I’m waiting for my SLNB results at the moment. Mine was 1B 0.8mm. I’d had the mole for years (and I mean years) which is why I never thought it was melanoma. On reflection it looked text book melanoma. So I’m very lucky it was thin. My consultant said only a few people find that a 1B has spread but it was obviously significant enough a number to offer SLNB to over 0.8mm. So I haven’t answered your question really but I just wanted to say I’m with you on this! 

Katybb
Posted by

So when my stage 1a melanoma spread, I found a lump in my groin myself. I got an appointment really quickly and they did a fine needle aspiration of the lump there and then, and booked me in for a full body PET-CT scan a couple of weeks later. My surgery (full groin dissection) was actually booked before we got the results, I think it was pretty obvious to all of us it was melanoma! About 6-weeks after surgery, and a baseline brain MRI, and baseline chest/abdomen  CT scan I started Pembrolizumab. 

So if your SNLB was positive, I guess you’d still get a full body scan... I don’t know if they routinely do further node removal though, I think it depends on the size? But you’d still probably have immunotherapy regardless - and which type depends on the BRAF status of the tumour...

BUT fingers crossed you won’t need to worry about any of that!! X

Kate

Shelvox
Posted by

Hi I was diagnosed with acral Lentigious Melanoma stage 1B PT2A 1.6mm braf wild type. I've had WLE and SLNB and 3 weeks later had a call to advise the lymph node biopsy was clear. Good luck x I am back at hospital 2 weeks time for full body check with skin cancer nurse and plastic consultant 

MH20
Posted by

Thanks for all of the replies, they are all really helpful.

I'm hopeful that my melanoma hasn't spread but I still worry about it. I am already on immunosuppressant medication so that always adds a little bit of worry for me.

I'll certainly take all advice on board and will have lots of questions to ask the nurse when I see her on the 25th.

MH20

"I am not afraid of storms, for I am learning how to sail my ship."

~Louisa May Alcott

Helen13
Posted by

Hi Katybb 

Hope you are doing well. I was just wanting to see how you were/are on the Pembrolizumab? I had my first infusion 10 days ago. Feel totally fine but developed a swelling around my thyroid - my thyroid function is abnormal so need further bloods and scan and a decision around what next in terms of treatment

Helen xx

Helen13
Posted by

Hi MH20

Sorry to hear that you are going through this.

I was also diagnosed as stage 1B melanoma, mole on my shoulder that changed in appearance and had bled.  had WLE (wider excision) and SLNB (sentinel lymph node biopsy). my WLE came back normal but my sentinel node showed microscopic traces of melanoma - this fast forwarded me from stage 1B to stage 3A. from there I had a CT scan and once they were happy there was no spread I was commenced on immunotherapy as I am B-raf positive (they check for this when they remove your sentinel node). 

Hopefully you wont need to know some of this and it will remain as stage 1B

Helen x

Katybb
Posted by

Hi Helen,

That’s really unfortunate if you’re having side effects right from the word go... I’ve been fine so far and will be on cycle 6 next week. I had some diarrhoea off and on for a few weeks initially, but they didn’t think it was related.

How come you’re on Pembro if you’re BRAF positive? I was under the impression it would be Dabrafenib with trametinib in that situation?

I’ve just read your profile and it sounds like you’ve had complications the whole way through! How are you coping with that? Must have been incredibly stressful waiting to hear about the breast nodules? And again with your thyroid!

Hope you’re doing okay.

Kate Xx

Kate

Helen13
Posted by

Hi Kate

yeah I’m doing ok. Do feel like I bounce from one problem to the next at the moment. 

The consultant said I could either have immunotherapy or targeted therapy for BRAF positive melanoma. Treatment given to try and prevent recurrence. From a research point of view they are both pretty similar in terms of outcome. She suggested the Pembrolizumab as she has seen patients with some great results. 

Good to hear you have been doing well on the treatment. 

Helen xx