Tuesday 30 September 2014

5. Cancer Diagnosis and Staging

21 September 2014. I am travelling to Rome for a few days to visit my family and friends there. And I continue writing this Blog. I have quite a lot of catching up to do as I have left my melanoma story in January this year, when I came back from my Christmas break and went to see my dermatologist for the results of the excision biopsy. 

2 January 2014. Two weeks have past since the suspicious mole was excised from my back. The small wound on my back has healed very nicely (as nice as wounds and scars may be). Fortunately my skin heals well and fast. I am 'reasonably' nervous whilst I wait to see the dermatologist, I really want to prove him wrong, be told that it was just an unusual looking mole that was excised from my back. 

I go in, results are late, due to Christmas holidays...  He tells me I can wait for 2 or 3 hours there or I can go on with my day and he will phone me later. I take the latter option and go to work. Facing the same question now I would definitely stick around until I am told everything, in fact I can't quite believe that I left the hospital and went to work, maybe I was still in denial at that stage that things could be 'bad'. 

(I am writing this several months after that day but I realise how every minute of it is crystal clear in my memory). 

Once I get back to work though I do start worrying, and the more hours go by the more I feel I lack air, I cannot concentrate or even stay still, why doesn't the dermatologist call me? I speak to my colleague, I need to talk to someone, she does a great job in supporting me. Then finally the doctor calls and gives me my diagnosis of malignant melanoma over the phone. I am not sure what to say back to him, I am lost for words, I am sure I am supposed to ask many important questions, but what are they? I have really no idea. At the time I didn't fully appreciate all that this diagnosis meant for me. But I know immediately that this is very bad news. One thing that I was immediately told would happen to me is more surgery, more skin was to be removed around the area of the tumour (we can call it that now), a procedure which would minimise the chances of future local reoccurrence. This is called a Wide Local Excision (WLE) and I will talk about it in the next entry of this blog. 

Now, one thing that really surprised me when I got acquainted with the world of malignant melanoma and started talking to other cancer patients is how little we patients are told by doctors about our own disease. And this is one of the reasons which pushed me to read other patients' blogs, join groups on social networks, and write this blog: share information. One fundamental thing that dermatologists and also oncologists sometimes (often?) fail to clearly communicate to the patient is at what stage their disease is.

In essence staging describes the severity of the patient's cancer and is used to determine the most appropriate treatment and to provide a more accurate prognosis. The TNM system is one of the most widely used cancer staging systems (applied to most types of cancer) and is based on the size and/or reach of the primary tumor (T), the extent of spread to nearby lymph nodes (N), and the presence of distant metastasis (M). However, given that the vast majority of mm originates on the skin, another parameter used to stage mm is the Breslow scale which measures the thickness of the melanoma in the skin. Finally, the number stage (1 to 4) of melanoma combines the Breslow thickness of the mm with the TNM staging and this is described below. 

So there I was in January 2014 at stage 1B with my  unulcerated 1.3mm melanoma excised from my back. The prognosis was 'good' (it would had been 'excellent' for a melanoma no thicker that 1mm) with 80% probability of 10 year survival from the disease, i.e. about 20% probability of future spreading of the cancer over the next ten years (as my oncology would tell me a month later). This time my lucky star must have been temporarily eclipsed as that 20% happened pretty quickly: five months later this nasty unpredictable disease was in one lymph node of my neck, and I was fast-tracked from stage 1B to stage 3B in June 2014.

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At stage 0, 1 and 2 the melanoma is only in the skin and there is no evidence that it may have spread to a lymph node or other parts of the body.
Stage 0 (in situ melanoma) 
The melanoma cells are only in the top surface layer of skin cells.
Stage 1A 
The melanoma is less than 1mm thick and the skin is not broken (unulcerated)
Stage 1B 
The melanoma is less than 1mm thick and the skin is broken (ulcerated) OR it is between 1 and 2mm and is not ulcerated. [this was the stage of my melanoma in January 2014, when the primary tumour was removed from my back: 1.3mm not ulcerated] 
Stage 2A
The melanoma is between 1 and 2 mm thick and is ulcerated OR it is between 2 and 4mm and is not ulcerated.
Stage 2B 
The melanoma is between 2 and 4mm thick and is ulcerated OR it is thicker than 4mm and is not ulcerated.
Stage 2C 
The melanoma is thicker than 4mm and is ulcerated.
At stage 3, the melanoma has spread from the skin to the nearby lymph nodes (one or more) or lymphatic channels but there is no evidence that it may have spread to other parts of the body.
Stage 3A
The melanoma has spread into up to 3 lymph nodes near the primary tumour. But the nodes are not enlarged (i.e. they can only be seen under a microscope). 
Stage 3B
  • The melanoma is ulcerated and has spread to between 1 and 3 lymph nodes nearby but the nodes are not enlarged OR
  • The melanoma is not ulcerated and it has spread to between 1 and 3 lymph nodes nearby and the lymph nodes are enlarged OR [this was the stage of my melanoma after the neck dissection in July 2014, 1 lymph node positive]
  • The melanoma is not ulcerated, has spread to small areas of skin or lymphatic channels, but nearby lymph nodes do not contain melanoma cells
Stage 3C
  • There are melanoma cells in the lymph nodes and small areas of melanoma cells in the skin or lymph channels close to the main melanoma OR
  • The melanoma is ulcerated and has spread to between 1 and 3 lymph nodes nearby which are enlarged OR
  • The melanoma may or may not be ulcerated and has spread to 4 or more nearby lymph nodes OR
  • The melanoma may or may not be ulcerated and has spread to lymph nodes that have joined together
At Stage 4 the melanoma has spread elsewhere in the body, away from where it started (the primary site) and the nearby lymph nodes. [Sadly, in November 2014, I progressed to stage 4 as the cancer metastasised to my liver and bones]
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3 comments:

  1. Beautifully written Francesco. I am surprised that you were given this diagnosis over the phone. When you went to see the dermatologist did they ask you to bring someone with you?

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  2. Thanks Brian. I suppose I chose to leave the hospital as results were late and the dermatologist told me it could be a few hours to have the histopathology report. However once he got the results he had to call me. No, they did not ask me to bring someone with me.

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