Hi Darren,

I think there have been cross wires when you've received your results. There are 2 types of Staging - Tumour staging (the depth of the melanoma) and the overall Staging which takes into account the tumour depth, if there is any nodal involvement & if it's spread anywhere else. They do an initial staging from the biopsy results & then a final staging after further surgery etc.

So your diagnosis is Tumour Stage 4 (T4) which means the melanoma was more than 4mm thick. If you haven't been told of any ulceration, then at the moment your INITIAL overall Staging is 2b. If there is ulceration, you are Stage 2c. 

Your next step is to have a Wide Local Excision (WLE) and a Sentinel Lymph Node Biopsy (SLNB) (if you choose this option). These procedures will confirm if the initial staging (Stage 2b or c) is correct. However, if any melanoma is found in a lymph node, this will change your stage to Stage 3. If you are offered a scan & it shows melanoma has travelled anywhere else internally, your stage will change to Stage 4. www.cancerresearchuk.org/.../tnm-staging

I haven't seen the Macmillan pamphlet but it should explain about the TNM (Tumour, Node, Metastasis) Staging - ask for your pathology report and it will probably show T4n0m0 (meaning tumour is 4mm depth with no ulceration and no metastasis at the initial biopsy). It should then show the overall staging for a T4 (4mm tumour) with no ulceration and metastasis is Stage 2b or with ulceration or metastasis is Stage 2c.

After WLE, SLNB and a scan and your staging is confirmed, you will next be offered a year of adjuvant drug therapy to try & stop the melanoma from returning and to kill off any micro cell(s) that haven't shown up in the surgical procedures & scan. If your stage changes to 3 or 4, you will be treated with immunotherapy or targeted therapy - if either of these works it should shrink any tumours & keep the cancer stable. These treatments are showing great results.

I hope this explains it for you. It's a minefield to understand I'm afraid & it should really have been explained in more detail to you. Finally, in answer to your question - they can't know or assume spread has occurred - only the WLE, SLNB and scan can tell them that. So you are not Stage 4, you are Stage 2 (either b or c) at the moment & hopefully that won't change after these procedures.

Hopefully you will get an appointment very soon to get the ball rolling with the next step. Let me know if I can help answer any questions you have meanwhile. Good luck,

Angie (stage 3 melanoma patient since 2009)

Hi Angie. Thank you so much for the comprehensive reply. Everything you have said makes perfect sense, but its so difficult to cut through the guidance you can read on the internet. Whilst the dermatologist did say the staging was in respect of the melanoma rather than the cancer itself, the documentation they provided is contradictory because on one page it says stage 4 is a melanoma that has spread, and then it goes onto defining what procedures are carried out (as you have outlined) to determine spread. 

I have an initial meeting with the Plastic Surgeon on Wednesday, but I was fearful that they would not be able to provide any more detail on the staging as it was not their area of expertise - I will however certainly ask them to confirm what the lab results were as you have recommended. 

Whilst it is very early days, i do feel a little more relaxed now rather than sitting here wondering how long I've got left! 

Really appreciate the time you have taken to reply.

Hopefully you will get a Plastic Surgeon that is very tuned on to melanoma. My plastic surgeon was brilliant (he's recently retired from clinical work) and he also taught his junior surgeons as much about melanoma as my dermatologist (another brilliant consultant) knew. 

Good luck on Wednesday & hopefully you will be better informed about your melanoma.