1a/1b melanoma

Hi Meg436 and a very warm welcome to the online community although I'm sorry you've had to join us.

I was diagnosed with stage 2a melanoma so had both a WLE and SLNB as routine. 

I'm attaching the NICE guidelines in this link which state when a SLNB should be offered. You haven't said how deep your melanoma was, but you'll see that it recommends a SLNB if the melanoma is between 0.8 and 1mm deep and ulcerated, or over 1mm deep.

I haven't had to ask for a second opinion, so don't have any personal experience, but this information from Macmillan explains the pros and cons of having one and how to go about arranging it.

When you have a minute, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Meg436, sorry to hear about your diagnosis but welcome. I don’t have experience with requesting a second opinion personally. But I kinda had the reverse situation myself. When the dermatology doctor gave me the results from my original excision, she confirmed malignant melanoma and said it was stage 1a. She gave me a leaflet on 1a and told me I needed a WLE and SLNB. I didn’t ask much at the time but I did ask what the depth was and was told 1.0mm. After I left I read the leaflet and I realised quite quickly that based on what was in the leaflet, I must have been 1b on the depth alone. When I later spoke to the plastic surgeon he gave me a lot more information about the characteristics from the original biopsy my and confirmed it was indeed 1b as I suspected, which is the reason I was offered the SLNB in the first case. I’m pretty sure the first doctor just mis read the notes or something rather than it being restaged between the two meetings.

At stage 1b my WLE & SLNB were done on the NHS without issue

Hi there! I was a 1B and based in NI they told me they had no resources to do the SLNB only highers stages so a very limited number of patients here are being offered it. I ended up paying and going to Dublin to have the WLE and SLNB because the guidance stated it should be offered to 1B so I really felt I needed it. It turned out I had involvement in 1 of my lymph nodes, so it was just as well I got it done - I'm just about to start treatment now. It's awful that you aren't being offered it, I know exactly how you feel because it caused me so much stress. Where abouts are you based? 

Hi Clayoh

Thanks so much for replying to me. Sorry to hear about your diagnosis. I am also based in NI and was told the same thing. Can I ask how deep your melanoma was and if it was ulcerated?

Also how much did your procedure cost in total? I've been struggling to finduch information about places that do it or pricing.

Thanks so much

Hi Idg559

Thanks so much for getting back to me. Sorry to hear about your diagnosis. It sounds like you have had a confusing journey like me also.

Can I ask where you are based, was it recently that you had the SLNB on the NHS? 

Thanks

Hi Meg, I was 1.1mm non ulcerated classing as 1B/ PT2a. They are not working to NICE guidelines in NI because they don't have the resources which is shocking and causes so much stress to newly diagnosed, especially when the literature they gave you states you should be offered this. I went to Dublin and the procedure cost me about £5k, in all honesty it was worth it. I am now finally just going to start my treatment after my diagnosis in June and surgery in August. Feel free to message me if you need anymore information.. good luck Claire 

Sure, I’m in England, north west of London. I had my SLNB and WLE in early October.

Hi latchbrrook

Thanks so much for getting back to me. Sorry to hear about your diagnosis. Can I ask when you had these procedures done and how was your recovery after? 

Thanks for sending links for that information. I really appreciate your help x

Hi Meg436

I had the WLE and SLNB nearly 6 years ago now. The WLE was on my upper left arm and the SLNB in my left armpit. Both areas healed quickly, fortunately. I was a little sore for a few days after the operation but had full movement back in my arm and was able to go about as normal by the time I went for my check-up and results 2 weeks later.

Have you decided whether to go for a second opinion? 

HI, Meg, I too am from N.I.I paid to go private to get the initial biopsy done as the waiting list was a yr. I am still waiting for my SlNB with NHS.. over 4mnths of waiting since i was diagnosed.I have been told there is a long wait for SLNB due to clearing up after Covid.It would appear NICE guidelines cannot be adhered to here!!