10. Meeting the Surgeon (and on Medical Records)

As I mentioned previously in this Blog, one of my reasons for writing is to describe the events connected with my cancer diagnosis, and crystallise my thoughts and emotions along the way. One day, I may want to have something to go back to in order to remind myself of how the chain of events unfolded and how I lived every step of the way. Something other than my medical records, something which includes my perspective on it, given that I was in the middle of it all.

Medical records are cold and pitiless pieces of paper. The correspondence between the doctors, the update letters addressed from the specialists to your GP, the histopathology reports. They tell your story without your permission, without including your perspective. Let’s have an example. The oncologist writes to the surgeon (who will be introduced shortly) in July 2014: "I saw Mr Gabriel in clinic today and he is making an excellent postoperative recovery”.  Really? I say: "actually I still feel pretty sore and my shoulder movement is somewhat limited, I am pretty sure I used to feel a lot better before surgery, so you may want to drop the word 'excellent'!". The dermatologist, oncologist, surgeon, radiologist, histopathology consultant (and more specialists are still to come into play), they all write things about you which are going to affect the rest of your life without even knowing you that well (if at all), I find it preposterous! At least here I can add some more background, emotions and inject some life into my story of facing melanoma. It does not seem right to leave it to the doctors to talk about it in their brief heartless correspondence and reports. 

Note that whilst I spoke ironically about medical records it is obvious that they are extremely important documents to keep and patients have the right to access them. Please refer to the bottom of this post for some information on patients' rights in relation to accessing medical records.  

Back to my story, in June 2014. I have my referral letter (at the time of writing I have put together a large file with copious correspondence and reports!) from the dermatologist to see a surgeon, who specialises amongst other things in skin cancer. I arrange for a consultation as soon as he is available. I go to my appointment on a warm sunny morning and this is how a new medical professional appears on my melanoma landscape. He is cold and distant. But I immediately decide that this is what you want from a surgeon (so I try hard not to dislike him in spite of myself). Someone capable of performing major surgeries on patients surely must be a cold blooded distant person. If he was warm and empathic you probably would not trust his firm hand. He inspects my neck, does not compromise himself by saying whether my swollen lymph node may or may not be cancer, he simply lays out the next steps for me:

1. I will undergo a Fine Needle Aspiration (FNA) biopsy first. The FNA is a type of biopsy procedure in which a thin needle is inserted into the area of abnormal-appearing tissue or body fluid. The fluid and tissue extracted through the needle can then be observed under the microscope. 

2. Should the results of the FNA be 'not conclusive' I will undergo surgery to excise the lymph node for full biopsy under the microscope. This is a relatively small surgery.

3. With step 1 or if needed step 2, we wil have the answer we need . If we can rule out cancer (either through FNA or excision) everyone's happy (especially I). Should the lymph node show melanoma, I will have to undergo lymphadenectomy, or neck dissection, which is removal of all the lymph nodes to the side of my neck where cancer cells were found, this is a major surgery not without risks and potential long term consequences. At this stage, this was really the worst case scenario. 

Unfortunately I would go through all the above steps, 1. FNA ('not conclusive') 2. Lymph node excision (shows melanoma) 3. Neck dissection. 

As a consequence I also learnt a lot about all these procedures so you are going to have to make good use of your patience, a very precious virtue to cultivate, as I have a lot more to write about in the next entries of this Blog. 

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I wanted to spend a word more on the importance of keeping your medical records with you and the right of access to them. I have come across stories of people who do not have their medical records at home, maybe simply because they forget to ask for a copy when they visit the hospital and in some cases, when requested, the hospital then refuses to provide them, sometimes replying with patronising explanations such as that the patient does not need them or would not understand them. First of all we sadly understand them very well as we become extremely knowledgeable about our disease or condition. Secondly, it is only common sense that we should hold a complete file with our medical history. What if you wanted to go for a consultation with a new doctor for a second opinion? Surely we will need to be able to provide our complete medical history. And what about if you considered treatment abroad?

Usually under private health care it is easier to obtain the records, as long as you remember to ask the doctor or their secretary, then just make good use of your all so precious filing and admin skills! However with the NHS usually a formal request needs to be made and this is when often patients are met with resistance. So let's arm ourselves with some knowledge to ensure our rights are not compromised. 

In the UK every patient has the right to have access to his or her medical records. This right is set out in section 7 of the Data Protection Act 1998 (which is not only about medical records but about any personal data of which a person is the subject).  The Department of Health has laid out the guidelines to assists NHS organisations in England, through the process of dealing with a data access request. A link to the guidance is below. 

http://systems.hscic.gov.uk/infogov/links/dhaccessrecs.pdf

The right to access to medical records may be limited or denied only in certain specific circumstances, for example when the disclosure of the medical record "would be likely to cause serious harm to the physical or mental health or condition of the data subject”. 

Section 7 of the Data Protection Act 1998 allows the data controller (basically the person or organisation who has control over the processing of the data) to charge a fee for access to data. Currently the NHS charges fees (http://www.nhs.uk/chq/Pages/2635.aspx).

9. On the Battle Field Again

June 2014. It's the beginning of June, life keeps going on at a crazy fast pace (all Londoners will be familiar with it), more than ever, after dealing with malignant melanoma, I appreciate the small beautiful things that life constantly throws at us, I embrace everything with an open heart, I have newly found energy, determination and happiness inside me... until I land on one of the most stressful weeks in my personal living memory: a major leak from my bathroom floods my downstairs neighbours' bathroom and I discover a lump in my neck. When it rains it pours, as they say. 

The leak from the bathroom proves to be the more easily solvable problem of the two. I am already dreading having to have the whole tile-work around the bath removed in order to determine the cause the leak. However, to my great relief, when the plumber inspects the bath he immediately realises what the issue is. The seal around the bathtub has come off in a few points leaving gaps between the bath and the walls and the water is going thorough those gaps when the shower is turned on. We try running water straight through the plug hole and no more water is going through downstairs. This proves that the plumber's diagnosis is correct, the plan of action is therefore pretty painless. Reseal the bathtub, let it dry. Problem solved. As a word of advice on bathroom leaks, based on my own as well as several friends’ experience, the vast majority of leaks (especially in older and conversion properties) are caused by water going through from around the bathtub. It appears that workmen in the UK often times leave too large a gap between the bath and the bathroom walls (for reasons to be determined), therefore always check that there are no obvious gaps in the seal and get the bathtub resealed when needed (or do it yourself as it’s pretty easy)! 

Apologies for the digression. Now to problem number two: the lump in my neck. I am concerned from the beginning as this is exactly what the dermatologist and oncologist warned me to be watchful for. A swollen lymph node may indicate that the cancer has spread there. Of course a swollen node can also be caused by a simple infection (at the end of the day we now know that lymph nodes are there to fight infection and provide immunity). Coincidentally I am due for my quarterly visit with my dermatologist that very week. So I plan to ask him what he thinks about it. He is immediately concerned, which is not a good sign as historically he always got it right with me. He says it is a very suspicious node and it could be melanoma and he refers me to a surgeon for an excision biopsy as this is outside his remit as a dermatologist. He also says that of course there is a chance this may turn out to be nothing bad but we will not be reassured until we know for sure.

I leave the hospital and I am petrified. As usual though I am very 'matter of fact' in dealing with the issue. I am not too concerned with the long term implications of cancer spreading (again, I feel too young - still! - and too well and full of energy and life, to really accept that this disease may ultimately kill me) but the short term prospect of more uncertainties and more surgery daunts me.

I will see the surgeon for an initial consultation the following week, and I'll talk about this in the next entry of this Blog. Now I would like to spend a word on the subject of discovery new lumps in your body, which is a frightening moment for anyone and much more so for someone with a history of cancer. The basic advice, which really is a lot of common sense (but this sometimes disappears when we are under stress) is as follows: 

• Go get it checked. Don't delay going to see a doctor, seeing a doctor will not turn into 'bad' something which is not. A doctor may be able to tell you straightaway that something is not of concern and you will get your peace of mind sooner. If something is of concern on the other hand, you will tackle any issues as soon as possible without wasting precious time. 

• Do not spend hours googling stuff to self-diagnose. Google-self-diagnosis can be dangerous as it may delay your visit to the doctor. Of course I did do a lot of googling myself, but I was just doing that in parallel to seeing the doctors. The internet, including social networks (and of course Blogs!) can be an invaluable source of information and connection, however it should never replace or delay a visit to the doctor. Symptoms checks should be left to medical practitioners as they must be evaluated case by case, considering your specific circumstances and overall health among other things. As an example of useless and dangerous google-self-diagnose, one thing that you may read on swollen lymph nodes is that if the lump is tender and sore it is much more likely to be an infection of some sort. If it's hard and not sore it is more likely to be cancer. Well, my swollen lymph node was tender and sore and turned out to be cancer, so there we go.

8. Melanoma Break

April and May are by far the best months of 2014 for me as I get a break from dealing with melanoma. My scars have healed well, I got my prognosis, it's a shock to the system but I am gradually coming to terms with it. Now I just need to get on with my life.

I have a surveillance plan in place, in line with the UK protocol for malignant melanoma patients. I will see the dermatologist every 3 months for 3 years, then every 6 months for the rest of my life. As I had one mm I now have an increased risk of developing another mm in the future. There is of course also the much scarier scenario of future spreading of the cancer to the lymph nodes and internal organs. This can happen as microscopic cells may have 'escaped' from the primary cancer on the skin before the mm was cut off and can travel to other parts of the body (through the lymphatic system or the bloodstream). So one thing I need to do going forward is to regularly self-check my lymph nodes for any swelling, especially in the neck and armpit areas (where we have many of these glands) as given the location of my primary tumour, this is where it would more likely spread first. It would be the beginning of June when I noticed a swollen gland in my neck, and my fight with melanoma would continue. But until then I enjoyed my 'melanoma break'.

One word on lymph nodes, if I may, as they have become such an important part of my body for me to be aware of, such a common word I use in my daily conversations (and not just the ones I have with myself!), such an important aspect of my life, and yet I must confess that I lived 37 years in blissful medical and anatomical ignorance of the fact that we have such wonderful glands in our body.

The lymph nodes are glands situated all over the body and are connected by a network of lymphatic vessels. They form part of the lymphatic system which is one of the body's natural defences against infection. Cancer can develop in the lymph nodes in two ways. It can start there as a primary cancer, the cancer that starts in the lymph nodes is called lymphoma. Or it can spread into the lymph nodes from a primary cancer elsewhere in the body, this is known as secondary or metastatic cancer. In this latter case the cancer cells which are found in the lymph nodes will be the same type of cancer cells as the primary tumour. For example if melanoma spreads from the skin to the lymph nodes it will be melanoma cancer in the lymph nodes, this is important and different types of cancer are treated differently.

The most common sign of cancer cells in the lymph nodes is that one or more of the lymph nodes become enlarged. However, if there are only a small number of cancer cells in the lymph nodes, they may feel normal. A CT (computerised tomography) scan or MRI (magnetic resonance imaging) scan will enable to make a diagnosis of secondary cancer in the lymph nodes. CT and MRI scan should be performed when there is risk of spreading of cancer to the lymph nodes. Very often when a primary cancer is removed through surgery, the surgeon will also remove some of the nearby lymph nodes. It's important to know whether a primary cancer has spread to any nearby lymph nodes, as it helps assess the risk of the cancer coming back and whether further treatment is necessary. 

So there I am, in April 2014 (having learnt quite a bit about lymph nodes) but feeling very positive and happy. I appreciate being 'wound free' and healthy, I carry the scar on my back from the wide local excision as a sign of strength to overcome difficulties. I exercise a lot, I go to my Salsa classes, I travel to Italy, I spend time with the amazing people I am lucky enough to have in my life. I also finish my training and qualify as a Personal Trainer, and whilst for the time being I don't look for a career chance (as, remember, I still have my job in insurance) I am loving being able to apply what I have learn to my own fitness regime and I feel great within myself.

At the time of writing, in October 2014, after having faced much harder battles against melanoma during the summer months, I feel mentally as well as physically exhausted and I so hope I can soon experience a similarly happy period to the one I had in April-May to enjoy. Another melanoma break. Funny how I am not even thinking anymore about life before melanoma. That will never come back, I know this much. I know that I will never be as carefree and light-hearted as I used to be. The dark shade of cancer will always be cast in my way, it will follow my steps, sometimes more silently, sometimes more overwhelmingly. But I am nonetheless longing for a time when I feel again physically powerful and mentally strong and confident that I can win not only the next battles but this whole war against melanoma. 

7. The Oncology Appointment

February 2014. The scar from my wide local excision heals well and fast. I see the dermatologist again two weeks after the procedure. He is happy with the outcome and the healing. He confirms that the entire skin margin removed which was sent off for biopsy is 'clear', i.e. no cancer cells are present. My case has been discussed by a multi-disciplinary team, involving, besides the dermatologist, a surgeon and an oncologist and the conclusion is that I need no further treatment at this stage. However I am then referred to the oncologist for a consultation.

26 March 2014, 10am. My first ever oncology appointment. 26 March was the first appointment I could get and it works well in many ways so I book it. There is only one slight issue, the 26 is the day after my birthday and even if I have no prior experience of it I am pretty sure that going to an oncology visit with a heavy hangover cannot be a good thing.  What if the oncologist asks me how I feel? I would then have to answer: "I feel terrible with no energy and I have an awful headache; but I would not worry about it as it's definitely got to do with the vast amount of red wine I drank last night"! That would not make a good first impression. So I try to manage this issue as well as I can. I go out for dinner with my friends on March 25, and I do drink red wine but I am sensible (joking apart I always am! Well... almost always). In fact I have a lovely evening with some amazing friends, I also make a little speech about how wonderful life is (ok yes I must have had enough wine!) and I go home content. I am actually quite looking forward to meeting the oncologist the day after.

The visit goes in an excellent way as far as I am concerned. I don't get a huge amount of new information off the doctor to be honest (which I did not already know), but then again I was not expecting to learn any revolutionary information. [I need to add that over the previous weeks I have used a large percentage of my monthly Wi-Fi allowance researching melanoma, but I will talk about my experience of the pros and cos of google-diagnosis in a different post]. Unfortunately I was not taking written notes at the time (like I do now) for my records, however this is pretty much what I was told: 

• Based on the thickness of the mm removed from my back, historical data suggests that I have approximatley 80% probability of 10-year survival. That is to say that, based on historical sample of patients, 8 out of 10 patients who had a skin tumour similar to mine were still alive after 10 years; 2 out of 10 developed metastases and died from the disease. 
• However, these rates don't allow for the very recent and encouraging advances in treatments, so these can be seen as conservative estimates. (At the bottom of the page are the melanoma survival rates for each stage as they are reported on www.cancer.org.)
• I need to be vigilant. Check for any swelling in the areas where most lymph nodes are (neck, armpits, groin), as lymph nodes are where mm usually spreads first. Report to my doctor any symptoms like cough, sore throat or headaches which do not disappear within a couple of weeks. At the same time I don't have to become over paranoid (more easily said than done as I would realise in the future), as I will get headaches and cough occasionally, like people do, and must not always panic that it may be cancer related.
• I need to tell to my first degree relatives that they have a slightly increased risk of developing skin cancer and they should be vigilant too. 
• If all goes well and my melanoma cancer does not progress I don't need to see him again (sadly I would see him several more times over the coming months). 

I tell him that I am optimistic, that I can only go through life like I have always done, with an open heart, with the smile on my face, embracing everything that life throws at me, making the most of everything that I have the luck to enjoy. I have always adopted this approach and I will do it ten times more now. Whilst I will adopt an healthy life-style, I will not constantly worry about the disease coming back as in the end we never know what life has in store for us, so there is no point in worrying in advance about things we cannot control.  He tells me that I am totally right in my approach and that he could not have expressed it himself in a better way than I did.

I leave the oncology clinic and I have mixed feeling; never have I felt so fragile and yet so strong, so mortal and yet so alive.

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Survival rates for melanoma skin cancer by stage

Source: www.cancer.org

It is important to note:

• Improvements in treatment since the statistics were compiled may result in a more favourable outlook for people being diagnosed now.
• Survival rates are based on previous outcomes of large numbers of people who had melanoma, however they cannot predict what will happen in any particular case.

Stage IA: The 5-year survival rate is around 97%. The 10-year survival is around 95%.

Stage IB: The 5-year survival rate is around 92%. The 10-year survival is around 86%.  [this was my prognosis at March 2014]

Stage IIA: The 5-year survival rate is around 81%. The 10-year survival is around 67%. 

Stage IIB: The 5-year survival rate is around 70%. The 10-year survival is around 57%.

Stage IIC: The 5-year survival rate is around 53%. The 10-year survival is around 40%. 

Stage IIIA: The 5-year survival rate is around 78%. The 10-year survival is around 68%.* 

Stage IIIB: The 5-year survival rate is around 59%. The 10-year survival is around 43%. [this was my prognosis at July 2014]

Stage IIIC: The 5-year survival rate is around 40%. The 10-year survival is around 24%.

Stage IV: The 5-year survival rate is about 15% to 20%. The 10-year survival is about 10% to 15%. 
[this is my prognosis after progressing to stage 4 in November 2014]

*The survival rate is higher for stage IIIA cancers than for some stage II cancers. This is likely because the main (primary) tumour is often less advanced for IIIA cancers, although this is not clear.

6. More Scarring: Wide Local Excision (WLE)

January 2014. So my dermatologist has told me that I must undergo a surgical procedure called Wide Local Excision (WLE). This is scheduled for about four weeks after my diagnosis of malignant melanoma. The rationale for the surgery is crystal clear. Basically, during an excision biopsy only a small area of skin surrounding the suspected melanoma is removed. If mm is confirmed, additional healthy skin must be removed around the site to ensure there is enough 'clear' tissue removed (usually around 2cm but this depends on the thickness of the mm too). This minimises the probability of future local recurrence.

I am upset. I am slowly coming to terms with everything that is happening to me. I try not to think too much about the cancer diagnosis per se and any potential long term consequences (such as the 'it may kill me' bit). But I hate the fact that mm is already messing about with my current plans, with my short terms objectives in life. In that period I have enrolled in a part-time fitness course to qualify as a personal trainer (as I love fitness and I think it's great to have hobbies and interests which are unrelated with my full time job in the insurance world). So I want to be reasonably fit, I am exercising a lot and I am loving my fitness routine. Just how inconvenient is it to have to undergo a surgical cut (not a small one this time unfortunately) and be unable to train for at least 2 weeks?! So in the last couple of weeks before surgery I go to the gym every single day and I work out extra hard. With every step on the treadmill I may be running away from mm, but with every weight lift I am punching it right in the face. Frustration sky high.

30 January 2014. My WLE is done as an outpatient procedure by the dermatologist under local anaesthetic. I subsequently found out that such procedure is more often done by a plastic surgeon, especially when it involves a skin flap or graft, which will depend on where on your body the procedure needs to be done. A flap or graft means that the skin removed is then replaced with skin from elsewhere on the body.  Mine is on my back, so not particularly complicated (no flap or graft is required) and my dermatologist is a mm specialist, so he does it himself. Literally a piece of the skin is cut off and then the wound stitched back together. Now at the time of writing I cannot help but thinking that a plastic surgeon could have done a neater job, but the most important thing is that the job is done, and the look of a scar, which I cannot even see, is not a key concern at this stage.
The procedure does not sound so bad to me, but it is actually a little worse than I anticipated. There is no pain at the time of course, due to local anaesthetic, but it's hard to ignore the smell of burnt flesh (cauterisation is used to burn the surrounding tissue around the cut to stop the bleeding).  Fortunately my mm (primary tumour as I might call it now) was on the top of my back (right under my neck) so during the WLE I am lying on my tummy and my back is an area of my body that I cannot possibly look at whilst the dermatologist is carrying out the procedure, even if I was really tempted to do so for some obscure reason. I am therefore spared any graphic details (and so are you). There is always a bright side to everything!

Pain is quite bad over the next few days. Up to 10 days afterwards. I think I was only off work for 2-3 days. I would recommend that anyone who has a WLE take at the very least one week off work (and this is for sedentary work). Thinking about it all now I realise how this procedure was more 'heavy' than I had anticipated, I was not mentally prepared for it. I faced it by pretending that it was just a 'little cut'. Now I realise how upset I really was, and how this physical and mental burden, which I was trying to see as a 'matter of fact' medical appointment, left more scarring than expected, both outside and inside me.

I am feeling positive at this stage. I go back home and I see this as the starting point of my healing process and my full recovery. The end of my fight with mm. Little did I know that soon I would have much bigger battles to fight against the same evil.

The wound from the wide local excision a few days after the procedure (February 2014)

The scar from the wide local excision in October 2015