Hi, I have recently had a lump removed from my knee which was ulcerated and I was told was stage 4 melanoma. I have since had a Brian MRI and PET scan which I have been told is all clear. I now have to have a further lymph node biopsy from the groin and surgery to remove tissue from around the site of the original tumour. I’m really confused around being told it was stage 4 before it was known if the cancer had spread. Has anyone been diagnosed with a stage 4 that has then been changed? Does it matter? I’m 52 fit and healthy and never been ill so it’s a bit of a shock.
it’s also really confusing and I don’t know how worried I should be yet. Feel like I’m not really being as concerned as I should be and that it maybe wrong.
Thanks in advance.
Hi Percy and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that you've recently been diagnosed with melanoma but it's great to hear that your MRI and PET scans were clear.
From what you've said it sounds like you're now waiting for a wide local excision (WLE), which is when they remove a larger area all around the original excision site, and a sentinel lymph node biopsy (SLNB) where one of your lymph nodes is removed to see if there are any signs of the cancer having spread there. I've had these procedures so I'm happy to answer any questions you might have about them.
There are two stages with melanoma. The first is the 'pathological stage', which is determined when the pathologist looks at the original biopsy and the second is the 'clinical stage' which is based on what your medical team find when they examine you or from what they see if you have any scans.
The pathological stage is based on the depth, known as the Breslow thickness, and ranges from stage 1 (melanoma of less than 1mm) to stage 4 (melanoma of 4mm deep or more). As you haven't said what depth your melanoma was I wondered if the stage 4 you've been given is the pathological stage, if your melanoma was more than 4mm thick and you've been told you have no spread? I think that the final clinical stage isn't usually given until all scans, WLEs and SLNBs are complete.
The best person to check what stage you are would be your skin cancer nurse specialist (SCNS), sometimes known as a keyworker.
It would be great if you could pop something about 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.
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