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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4. The Start of the Journey (and how to know you skin)

Let me now go back to when it all began.

19 December 2013. I am already packed for my Christmas break in Italy, with family as usual, spent in Naples like I have done since I was born. Presents bought, Christmas cards sent (I have picked up some wonderful British traditions since I moved to London in 1999), suitcases ready, cat sitting arranged. The last tick on the list is a visit to my dermatologist.

I have many moles on my body and I am aware that I need to keep an eye on them. I had seen the dermatologist before, I had moles excised before, and thankfully they always resulted to be benign nevi, so I am not overly worried by this visit. However this particular mole at the top of my back looked quite suspicious (see 'take away 1' below). It had been pointed out to me by my partner who urged me to go and have it checked. As things stand now, he may have saved my life.

I hear a lot of frightening horror stories of mm patients who went to their GPs (Note: for non British readers, the General Practitioner or GP is your primary or 'family' doctor) pointing out a suspicious mole on their skin, only to be told that (what afterwards resulted to be mm) it was 'nothing to worry about' and were just sent home. Sometimes also dermatologists are equally superficial. Some patients had to really fight hard to convince the medical practitioner that they were concerned and they wanted the mole removed. Sometimes weeks or months elapse before the doctor accepts to remove the suspicious mole. And sometimes the 'nothing to worry about' mole turns out to be malignant melanoma. Scary. Very scary that medical partitioners should be so incompetent. If you are concerned about a mole, have it checked and if it has more than one if the suspicious characteristics (described below) it should be removed. Don't take no for an answer. It's you life which is at stake, and whilst minimising unnecessary surgery should also be an objective, this is definitely a case of better safe than sorry.

Fortunately for me I didn't go through any of this painful and stressful process. (the more painful after the diagnosis when you realise all the time which has been lost and how this could affect your future chances). In my case my GP referred me straightaway to the same dermatologist I had seen before. In my personal experience GPs are extremely competent (and lovely people too). So within a week I saw the dermatologist, I was lucky to get my appointment before the Christmas holidays. When he sees my mole he tells me straightaway that he suspects malignant melanoma, that he hopes he is wrong but that I will not leave the hospital that day until he cuts it off me to be sent for biopsy. So he does, it's a small cut, I can fly the day after, and off I go to Italy for my Christmas holidays, biopsy results in January.

Take away 1: know what to look for when examining your moles. Suspicious characteristics include mole that:

• Are getting bigger
• Are changing shape, particularly getting an irregular edge
• Are changing colour: getting darker, becoming multi shaded
• look asymmetrical (the two halves of your mole do not look the same)
• are itching or painful
• Bleed or become crusty
• Look inflamed

The best tip on how to spot anything dodgy was given to me by my oncologist. I expressed the view that for me it's hard to tell by self-examination whether I have any dodgy looking moles as I have so many of them, some brown, some black, some pale, some dark, many flat, some slightly raised, some slightly rugged... So the key is that even if you have so many different looking moles, all of them most likely fall under a 'group' or 'category' of moles you have, i.e. each of them will have others, elsewhere on the body, which look similar to it. However, if you have a mark, mole or blemish which does not look like anything else you have anywhere on your body, that is the one you should immediately show to your doctor or dermatologist!

Take away 2: sometimes it's you who must tell the doctors what you want from them and what they should do, not the other way around. If you are worried about a mole (based on the criteria above), don't take 'it's nothing to worry about' for an answer. Get it excised.

I have countless moles on my skin - September 2014

3. Sun Exposure or Genes?

It is known that excessive sun exposure, especially sun burns, increases the risk of developing skin cancer, including malignant melanoma ("mm"). People with very pale skin, skin that burns easily, with freckles or who have many moles (that would be me), present higher risk of skin cancer.

Using sun beds (even once!) significantly increases your risk of developing skin cancer.
It is also known that genetics and family history play a key role. There is a genetic predisposition to mm; some people may develop it in spite of never burning or tanning in the sun, some people will never develop it in spite of plentiful sun exposure over the years.


So is it really like winning a bad luck lottery? 

In my family there was no previous history of skin cancer (there is now) and whilst I have many moles on my body my skin tans (rather than burns), so despite being aware of it I always thought that I would be 'fine' in the sun as long as I didn't burn. As it turns out, I wasn't going to be fine.

Would I have developed mm had I never sunbathed? Did sun exposure cause my mm? No one knows the answer to this question and it does not really matter to some extent. I must have had it in my genes (I will not blame my mum and dad as they did a pretty good job overall!) or it would not have happened to me. However, there is no denial that I was a 'sun worshipper' and when I had the chance I used to sunbathe a lot, so I cannot help but thinking, did my own actions play a role in my mm diagnosis. How could I have done this to myself? I thought I looked good tanned and I ended up with unsightly scars on my body, not to mention a disease which may cut my life short. I have thought about it a lot in my head and thanks to some good advice and support I have come to the conclusion that I should not beat myself up. However I can certainly use my experience to increase general awareness.

Thankfully not once in my life have I used a sun-bed, or I would be now convinced that it caused my mm. But obviously this also implies that those who did use sun-beds and then developed mm should not beat themselves up either as they may well have developed the desease even without using sun-beds.

In a nutshell: you must have a genetic predisposition to develop skin cancer, however sun exposure may trigger it if you do have that predisposition, so it's really not worth finding out. Please be safe in the sun. Below are the key guidelines as suggested by dermatologists and skin cancer research, however they are laid out in my own words:

• Always use sun block creams when outdoors, no matter if you are not laying in the sun. The sunscreen should have a SPF of at least 30 and be broad-spectrum (provides protection from UVA and UVB rays). Use it generously and reapply regularly.
• However remember, using sun cream does not make sunbathing safe. 
• Please please please: seek the shade whenever possible, do not expose yourself to the sun between 11am and 3pm. 
• Always wear a hat and sunglasses when in the sun.
• If you have several moles on your skin go see a dermatologist once a year.
• Learn how to check your skin for unusual marks or moles that change over time and seek medical advice immediately if you notice anything unusual. When melanoma is detected early the prognosis is excellent, when it is detected late the prognosis is poor as it will spread elsewhere in your body. Spotting melanoma early can save your life.

Also, below are some suntan myths which are horror to me and anyone with any basic understanding of skin cancer. Please be sensible.

Myth 1: A light suntan is ok.
No it's not ok. Even lightly tanned skin means that the skin has been damaged.

Myth 2, (the horror!!): 'I have a few sun bed sessions before a holiday in the sun so my skin is already tanned and I will not burn during the holiday'. Honestly, having a sun-bed tanning session as a precaution against skin cancer is like eating cheddar cheese and cheesecake to lower your cholesterol level. Do not use sun beds. Ever. Please. I am pretty sure that one day they will become illegal.    

2. Human Nature

September 2014. Finally a holiday in Greece. Long awaited after my summer plans had to be cancelled due to the unexpected, unpredictable and harsh reality that hit me in June: malignant melanoma removed from my back in December 2013 had spread from my skin to a lymph node in my neck. So there I was, facing major surgery (lymphadenectomy or thankfully also more pronounceably called neck dissection) and officially a stage 3 cancer patient.

Not only had my summer plans gone out of the window but I suddenly realised that my whole life had changed in the moment the oncologist had looked at me and given me my diagnosis. All of a sudden I had more medical appointments lined up ahead of me than I had during my entire healthy 38 years of life so far. Also, I was told in plain English that there was a high probability that my life would not be as long as I expected. Taking new drugs and advances in treatment into account I could call it a 50-50 probability of survival in 10 years. That felt kind of low to me. When I was first diagnosed with melanoma and it was removed from my back, I was then given an 80% 10-year survival rate. That felt like bad news but I still felt I could kind of ignore it and I would be ok. Now, after lymph nodes involvement, I was finding myself standing on much thinner grounds.

Note that I have always thought that life is a gift, that we should treasure every day of it. That life is not a right we have and that we should not take anything for granted. I don't think I needed to be reminded of this in such an extreme way, but here we go, I shall accept it and not question the reasons why things happen the way they do.

We all know that we have to die at some point and that unfortunately not everyone dies when they are old. Still, I think we are genetically predisposed to believe that we will live until we are very old, it's human nature. That was my belief too.
Mind you, I may still get lucky, defy melanoma and live till 100, or I may die in an accident tomorrow (which would not do any favour to the compilation of melanoma survival statistics!). However, 'statistically' I will die from malignant melanoma before I die from something else and most likely well before I am 100. The realisation of this very real scenario hit me hard. I was probably more naive and more arrogant in claiming my right to my life than I cared to believe. The oncologist spoke. Any nativity and arrogance disappeared. I felt humble in front of the notion of my own mortality.

It's funny when in movies there are those scenes when the oncologist gives their diagnosis to the patient and after hearing the dreaded words it all goes blurry... That is actually how it happens in the real world. (Now I take no risks and I always go to my medical appointments with a notebook, a clear set agenda and I take notes!). Next thing I know is that I am at home and I have already decided that I will do whatever it takes to manage this horrible disease no matter how long and hard the journey may be. I am now in the very middle of this journey and I have decided to write this blog for 3 reasons:

1. Get it off my chest, organise my thoughts, rationalise what is happening to me. I am managing my melanoma diagnosis and all that it entails as a project that landed on me. One I certainly did not wish for but one which fell on me nonetheless. Hence here are my own project notes.

2. Share my feelings but also information with my family and friends, who are always enquiring about how I am and what is happening next. Unfortunately the answer is never straightforward, so here is the whole story for those interested!

3. Raise awareness of melanoma skin cancer. Most people do not know much about it other than (hopefully) sun exposure is a risk factor and that it is life threatening. It is again human nature, we only know about things that directly affect us or a loved one. And I am not saying that we should all become hypochondriac and know all about every disease out there. Yet I feel that there is too little information and knowledge about what is the fastest growing cancer, especially amongst young people. And this is all the more important as being safe in the sun and early detection can save lives, and spare people from painful and disfiguring surgery, harmful radiations and endless medical appointments.


4. [Added in May 2015] After sadly progressing to stage 4 metastatic melanoma and having to pull out the hardest fight yet, I also hope that through my story I can communicate to people who face the same horrific diagnosis, and they loved ones, that (thanks to new treatments) this is not a death sentence anymore, we can win it, we must never lose FAITH. 

1. Why this Blog

This is a blog about my fight against malignant melanoma. I was first diagnosed in January 2014 when a thin cancerous mole was excised from my back. Unfortunately a few months later the cancer spread to a lymph node in my neck and (in spite of more surgery) a few months on it metastasised in my liver and bones, and I am now living with an incurable disease and fighting for my survival against melanoma. 

My reasons for writing are set out at the end of post 1 ('Human Nature'). In summary I write to:

1. Get it off my chest, organise my thoughts, rationalise what is happening to me.

2. Share my feelings but also information with my family and friends.

3. Raise awareness of melanoma and skin cancer prevention.

4. [Added in May 2015] Tell people who are diagnosed with stage 4 metastatic melanoma, and their loved ones, never to lose FAITH. Thanks to new treatments, this is not a death sentence anymore. We can win this. 

Malignant melanoma is a cancer of the skin, your largest organ. Between the dermis (inner layer) and epidermis (outer layer) of your skin are cells called melanocytes. Melanocytes are the cells that become cancerous in malignant melanoma. Melanoma is a type of skin cancer because of the cells from which it originates (melanocytes), however it may then spread and metastasise just like any other type of deadly cancer.  Malignant Melanoma can spread from the skin to virtually any other parts of your body, most often brain, lungs and liver.

Surgery, chemotherapy and radiotherapy, as well as targeted therapy and immunotherapy, may be used to treat melanoma. In spite of dramatic advances in treatment - with new drugs released in the last 2-3 years showing encouraging results - sadly every year thousands of people die from melanoma.

The number of people getting melanoma is now more than 4 times higher than it was 30 years ago. Sadly, it is now one of the most common types of cancer in young people aged 15 to 34.

Note that I am not medically qualified in any way and the information contained herein is based purely on my understanding as a patient who has spoken at length to doctors and other patients and researched and read plenty about the topic. However please refer to appropriate sources for medical advice and visit your doctor or dermatologist at once, if you have any concerns.

Thanks for reading.