November 2014. I am still narrating the events which took place in June this year, and I was hoping to continue the story to the present time on more positive tones, writing about how I started to feel better after surgery and how I was planning my life ahead after dealing with cancer, but unfortunately I just had a major set back.
Melanoma has come back and this time has spread into my liver and bones. Not good. It is not operable and I am now a stage 4 cancer patient. I am waiting to hear from my oncologist to confirm therapy and next steps, after more scans and two consultations over the last tremendously difficult seven days. I am at home on painkillers and the wait does not do any good to anxiety levels. I just want to get on with the therapy as soon as possible.
I will come back to all of this when my story develops through my Blog. For now I only know that I need to get out there and fight, with all my mental and physical strength, the hardest battle yet. Every day. And I will.
Friday 28 November 2014
Friday 14 November 2014
12. "Inconclusive" results (and diagnostic imaging techniques)
I have had to go back to my tidily filed medical records in order to remind myself of the order in which events unfolded in the month of June. Of course I remember very clearly having the Fine Needle Aspiration (FNA), discussing potential scenarios with the oncologist, my parents’ arrival, having the PET scan, having the swollen lymph node excised, hearing the biopsy results… but somehow all these experiences live each one strongly engrained in my mind but all of them in a blurred time dimension.
Whilst I arranged to see the surgeon and had the FNA done (as described in my previous 2 posts), I had also written to the medical oncologist whom I had met in March (now I just refer to him as 'my oncologist’ but I didn't then) to let him know that I had this situation under investigation. He asks me to go and see him. As expected, my consultation with him is not much fun. He examines the swollen lymph node, he says that there is a strong suspect it may be melanoma, given my prior history. However we will only know after the results of the FNA. As I anticipated, he says that whilst we clearly hope it will not turn out to be mm, I am there to discuss the scenario in which the lymph node does indeed show melanoma cells. In a nutshell, he tell me that should the node show melanoma I will undergo a neck dissection, in line with what the surgeon had already told me (see post 10). This would be performed only on the side of the neck where the affected lymph node is (the right hand side) as the two sides work independently. As I am always hungry for good news, I take the left-ritgh independence to be a very good one. But the reality is that now I am very upset. There is no more hiding from the scenario which is more and more realistically shaping around me. I burst into tears. The oncologist tells me that I am probably upset as people always tend to think about the worst case (dying from the cancer, he means), but that there are many more possible scenarios. I say that actually I have not even thought yet about the worst case scenario (but thanks for reminding me!) but the idea of undergoing such major surgery upsets me. I am so sorry that my body has to pay such a high price for something outside my control.
The oncologist prescribes me a PET scan (Positron Emission Tomography) of the whole body. This will be able to confirm whether the swollen lymph node is cancerous or not but also to check that (hopefully) there are no other cancer cells elsewhere in the body. This is planned for the following week. At the bottom of this post I have briefly explained some of the different scans available, and for reference I also included the name used for such scans in Italian, as I certainly did not know the difference between a CT scan and an MRI until this year, and I wouldn’t have had the foggiest idea of what a PET scan was! When this started to become common language for me, I found it even harder to always use the right language to tell friends and family in Italy what type of scan I was having done, it all became very confusing! So here they are explained for my own mental clarity.
The day after my oncology visit, my parents are due to arrive to London to visit me for a week. As I mentioned in my previous post, I had so far refrained from sharing with them any of my recent health concerns, as there was no need to worry them with such an uncertain situation. But now, could I pretend that none of that was happening when I saw them? And also a more fundamental question: would it be fairer for them to know or would it be better for their own sake not to know, for the time being? This is a very hard question that everyone facing major health issue such as cancer will face: how soon do you tell your loved ones? I actually knew where I stood on this issue: I just wanted to tell my parents everything, it would be fairer to them and I needed their support. However I found myself arguing with my siblings who disagreed with me and in order to protect our parents (who are not as young as they used to be) would rather I didn’t say anything. Eventually I convinced them that I must do how I feel and whilst I agreed with them not to share anything until that point, now that they are in London I will tell them, without any sense of drama (assuming I can talk with no drama!), that a swollen lymph node in my neck is being investigated and that so far there is nothing to worry about.
So it’s Thursday 19 June, 2 days after my FNA, my parents are due to land at 8pm at Heathrow and I said I would meet them at the airport. I am hoping throughout the day to get a call from the surgeon with the FNA results, hopefully an all-clear result, so that I could meet my parents with such wonderful news: “great to see you… and by the way the melanoma has not spread"! In fact the timing with which events unfold is like a card trick of the fate which creates for me one of the most stressful moments I can recall. It’s about 630pm, the flight is on time, I need to shortly start making my way to the airpot… the surgeon has not called… I have been staring at my phone the whole day… then the moment I leave my phone unattended for one minute of course I miss the call for the surgeon! The voice mail message simply says that he has some results and will call again. I have no way to call him back directly as I have his secretary's number but she has gone for the day. My heart is going at 100 beats per minute. what am I supposed to do now? If I go to the airport I am likely to break down as soon as I see my parents, I am not going to be strong enough, I will make them worry even more than necessary… I try to reach my brother on his mobile phone to ask if he could go meet our parents instead of me, but he is out of reach… I am panicking… I wish the doctor had not called at all. Now my results are ready… but I don’t know them. Why does he not call again? I am at work still and I really must make a move, I am talking to my good colleague who is comforting me and trying to make me think straight…
15 minutes later my telephone rings again, hands shaking, I answer, it’s the surgeon, he tells me results from FNA are ‘inconclusive’. He explains this is neither good nor bad, it simply means that nothing could be told from the sample. I say I was not expecting this as the radiologist had stressed that given the amount of fluid aspired he would have some conclusive results. He says this is the outcome in any case. Next step is for me to have a surgical excision of the lymph node.
I take a deep breath. I wash my face with cold water. “Inconclusive”. In the end this is good news, it gives me a little time to breath which is what I needed above everything else in that moment. There is nothing more to do for the time being, I just have to go to the airport to meet my mum and dad.
==========================
X-Ray [Italian: Radiografia]
An X-ray is a diagnostic imaging technique that uses radiation waves (x-rays) to take pictures of your body tissues. As an X-ray beam passes through your body, the body tissues and bones absorb and/or block the beam in varying amounts depending on its density. This creates a shadow that is picked up on film or a sensor placed on the opposite side of the beam. X-rays expose you to a small amount of radiation too small to cause you any harm. However radiation in large doses can be harmful and cause cancer.
Computed tomography (CT or CAT scan) [Italian: Tomografia computerizzata]
The CT scan is a diagnostic imaging technique that, like traditional x-rays, produces multiple images or pictures of the inside of the body. It generates cross-sectional images which can be reformatted in multiple planes, and can even generate three-dimensional images. CT images of internal organs, bones, soft tissue and blood vessels provide greater detail than traditional x-rays, particularly of soft tissues and blood vessels. Using CT scans of the body radiologists can more easily diagnose problems such as cancer, cardiovascular disease, infectious disease, appendicitis, trauma and musculoskeletal disorders. There is no conclusive evidence that radiation at small amounts delivered by a CT scan causes cancer.
MRI (magnetic resonance imaging) [Italian: Risonanza Magnetica]
MRI scans use a strong magnetic field and radio waves to create pictures, on a computer, of tissues, organs and other structures inside your body. It is commonly used to get detailed pictures of the brain and spinal cord, to detect abnormalities and tumours. MRI scans do not use X-rays so the possible concerns associated with X-ray pictures and CT scans (which use X-rays) are not associated with MRI scans. An ultrasound machine creates images called sonograms by giving off high-frequency sound waves that go through your body. As the sound waves bounce off your organs and tissues, they create echoes. The machine makes these echoes into real-time pictures that can be seen on a computer display screen.
Ultrasound [Italian: Ecografia]
Ultrasound scans use sound waves to create pictures of some soft tissue diseases that do not show up well on x-rays. However, ultrasound images are not as detailed as those from CT or MRI scans. Its use is also limited in some parts of the body because the sound waves cannot go through air (such as in the lungs) or through bone. For some types of ultrasound exams, the transducer (the wand that produces the sound waves and detects echoes) is rubbed over the skin surface. The sound waves pass through the skin and reach the organs underneath. As it uses sound waves and not radiations, this is thought to be a completely safe procedure.
PET (positron emission tomography) scan [Italian: Tomografia ad Emissione di Positroni]
A PET scan is an imaging test that uses a radioactive substance called a tracer to look for disease in the body. Compared with other types of scans, the main advantage of a PET scan is that it can indicate how well a particular part of the body (organ or tissue) is working, rather than simply showing what it looks like. PET can be used to diagnose various medical conditions (e.g. cancer), or to find out more about how a condition is developing. Increasingly, PET scans are being combined with another form of imaging such as magnetic resonance imaging (MRI) or computed tomography (CT). By superimposing one scan on top of another, doctors can create very detailed pictures of the body. The amount of radiation used in a PET scan about the same amount as for most CT scans. Short-lived tracers are used so the radiation is gone from your body in about 2-10 hours.
Whilst I arranged to see the surgeon and had the FNA done (as described in my previous 2 posts), I had also written to the medical oncologist whom I had met in March (now I just refer to him as 'my oncologist’ but I didn't then) to let him know that I had this situation under investigation. He asks me to go and see him. As expected, my consultation with him is not much fun. He examines the swollen lymph node, he says that there is a strong suspect it may be melanoma, given my prior history. However we will only know after the results of the FNA. As I anticipated, he says that whilst we clearly hope it will not turn out to be mm, I am there to discuss the scenario in which the lymph node does indeed show melanoma cells. In a nutshell, he tell me that should the node show melanoma I will undergo a neck dissection, in line with what the surgeon had already told me (see post 10). This would be performed only on the side of the neck where the affected lymph node is (the right hand side) as the two sides work independently. As I am always hungry for good news, I take the left-ritgh independence to be a very good one. But the reality is that now I am very upset. There is no more hiding from the scenario which is more and more realistically shaping around me. I burst into tears. The oncologist tells me that I am probably upset as people always tend to think about the worst case (dying from the cancer, he means), but that there are many more possible scenarios. I say that actually I have not even thought yet about the worst case scenario (but thanks for reminding me!) but the idea of undergoing such major surgery upsets me. I am so sorry that my body has to pay such a high price for something outside my control.
The oncologist prescribes me a PET scan (Positron Emission Tomography) of the whole body. This will be able to confirm whether the swollen lymph node is cancerous or not but also to check that (hopefully) there are no other cancer cells elsewhere in the body. This is planned for the following week. At the bottom of this post I have briefly explained some of the different scans available, and for reference I also included the name used for such scans in Italian, as I certainly did not know the difference between a CT scan and an MRI until this year, and I wouldn’t have had the foggiest idea of what a PET scan was! When this started to become common language for me, I found it even harder to always use the right language to tell friends and family in Italy what type of scan I was having done, it all became very confusing! So here they are explained for my own mental clarity.
The day after my oncology visit, my parents are due to arrive to London to visit me for a week. As I mentioned in my previous post, I had so far refrained from sharing with them any of my recent health concerns, as there was no need to worry them with such an uncertain situation. But now, could I pretend that none of that was happening when I saw them? And also a more fundamental question: would it be fairer for them to know or would it be better for their own sake not to know, for the time being? This is a very hard question that everyone facing major health issue such as cancer will face: how soon do you tell your loved ones? I actually knew where I stood on this issue: I just wanted to tell my parents everything, it would be fairer to them and I needed their support. However I found myself arguing with my siblings who disagreed with me and in order to protect our parents (who are not as young as they used to be) would rather I didn’t say anything. Eventually I convinced them that I must do how I feel and whilst I agreed with them not to share anything until that point, now that they are in London I will tell them, without any sense of drama (assuming I can talk with no drama!), that a swollen lymph node in my neck is being investigated and that so far there is nothing to worry about.
So it’s Thursday 19 June, 2 days after my FNA, my parents are due to land at 8pm at Heathrow and I said I would meet them at the airport. I am hoping throughout the day to get a call from the surgeon with the FNA results, hopefully an all-clear result, so that I could meet my parents with such wonderful news: “great to see you… and by the way the melanoma has not spread"! In fact the timing with which events unfold is like a card trick of the fate which creates for me one of the most stressful moments I can recall. It’s about 630pm, the flight is on time, I need to shortly start making my way to the airpot… the surgeon has not called… I have been staring at my phone the whole day… then the moment I leave my phone unattended for one minute of course I miss the call for the surgeon! The voice mail message simply says that he has some results and will call again. I have no way to call him back directly as I have his secretary's number but she has gone for the day. My heart is going at 100 beats per minute. what am I supposed to do now? If I go to the airport I am likely to break down as soon as I see my parents, I am not going to be strong enough, I will make them worry even more than necessary… I try to reach my brother on his mobile phone to ask if he could go meet our parents instead of me, but he is out of reach… I am panicking… I wish the doctor had not called at all. Now my results are ready… but I don’t know them. Why does he not call again? I am at work still and I really must make a move, I am talking to my good colleague who is comforting me and trying to make me think straight…
15 minutes later my telephone rings again, hands shaking, I answer, it’s the surgeon, he tells me results from FNA are ‘inconclusive’. He explains this is neither good nor bad, it simply means that nothing could be told from the sample. I say I was not expecting this as the radiologist had stressed that given the amount of fluid aspired he would have some conclusive results. He says this is the outcome in any case. Next step is for me to have a surgical excision of the lymph node.
I take a deep breath. I wash my face with cold water. “Inconclusive”. In the end this is good news, it gives me a little time to breath which is what I needed above everything else in that moment. There is nothing more to do for the time being, I just have to go to the airport to meet my mum and dad.
==========================
X-Ray [Italian: Radiografia]
An X-ray is a diagnostic imaging technique that uses radiation waves (x-rays) to take pictures of your body tissues. As an X-ray beam passes through your body, the body tissues and bones absorb and/or block the beam in varying amounts depending on its density. This creates a shadow that is picked up on film or a sensor placed on the opposite side of the beam. X-rays expose you to a small amount of radiation too small to cause you any harm. However radiation in large doses can be harmful and cause cancer.
Computed tomography (CT or CAT scan) [Italian: Tomografia computerizzata]
The CT scan is a diagnostic imaging technique that, like traditional x-rays, produces multiple images or pictures of the inside of the body. It generates cross-sectional images which can be reformatted in multiple planes, and can even generate three-dimensional images. CT images of internal organs, bones, soft tissue and blood vessels provide greater detail than traditional x-rays, particularly of soft tissues and blood vessels. Using CT scans of the body radiologists can more easily diagnose problems such as cancer, cardiovascular disease, infectious disease, appendicitis, trauma and musculoskeletal disorders. There is no conclusive evidence that radiation at small amounts delivered by a CT scan causes cancer.
MRI (magnetic resonance imaging) [Italian: Risonanza Magnetica]
MRI scans use a strong magnetic field and radio waves to create pictures, on a computer, of tissues, organs and other structures inside your body. It is commonly used to get detailed pictures of the brain and spinal cord, to detect abnormalities and tumours. MRI scans do not use X-rays so the possible concerns associated with X-ray pictures and CT scans (which use X-rays) are not associated with MRI scans. An ultrasound machine creates images called sonograms by giving off high-frequency sound waves that go through your body. As the sound waves bounce off your organs and tissues, they create echoes. The machine makes these echoes into real-time pictures that can be seen on a computer display screen.
Ultrasound scans use sound waves to create pictures of some soft tissue diseases that do not show up well on x-rays. However, ultrasound images are not as detailed as those from CT or MRI scans. Its use is also limited in some parts of the body because the sound waves cannot go through air (such as in the lungs) or through bone. For some types of ultrasound exams, the transducer (the wand that produces the sound waves and detects echoes) is rubbed over the skin surface. The sound waves pass through the skin and reach the organs underneath. As it uses sound waves and not radiations, this is thought to be a completely safe procedure.
PET (positron emission tomography) scan [Italian: Tomografia ad Emissione di Positroni]
A PET scan is an imaging test that uses a radioactive substance called a tracer to look for disease in the body. Compared with other types of scans, the main advantage of a PET scan is that it can indicate how well a particular part of the body (organ or tissue) is working, rather than simply showing what it looks like. PET can be used to diagnose various medical conditions (e.g. cancer), or to find out more about how a condition is developing. Increasingly, PET scans are being combined with another form of imaging such as magnetic resonance imaging (MRI) or computed tomography (CT). By superimposing one scan on top of another, doctors can create very detailed pictures of the body. The amount of radiation used in a PET scan about the same amount as for most CT scans. Short-lived tracers are used so the radiation is gone from your body in about 2-10 hours.
Monday 3 November 2014
11. Fine Needle Aspiration (as storm clouds gather)
The Fine Needle Aspiration (FNA) is done at a radiology clinic in Harley street, which is also where the oncology centre that I attend is. I realised by now that Harley street is the heart of private medical health in London, with ultra posh clinics equipped with ultra modern technology hosted by imposing refurbished Georgian properties. The high ceilings, the solid wood doors and exposed beams, combined with the impeccably dressed and spoken staff and the fancy technology, they all makes you feel like you will get the best medical care out there… yet the overwhelming feeling for me is still the sense of sadness which I have always felt when I am around hospitals. Really I don’t like them, as posh as they may get.
The clinic is modern and functional as expected, staff are friendly, I don't need to wait long until I am in the examination room. In my melanoma story, I think this is the first time that I am actually very nervous and anxious during a medical appointment. The procedure is explained to me, a fine needle will be introduced into the area of my neck showing the abnormal node to extract fluid. I will feel no more than a needle pinch and the procedure should not be painful. The area is likely to be left with some bruising. I think I am visibly nervous (am I slightly shaking?) when I lay down on the examination table. I feel like I must explain to the radiologist that I am totally cool with what he is doing, I trust him and I am not concerned at all by the procedure; that the reason why I am upset is that it has now pervasively dawned on me that the reason why the procedure is being done, the reason why I am there, is that there is the real possibility that I may have cancer in a lymph node. He says he understands. I mention my history of malignant melanoma and hence the immediate concerns the doctors and I had. He asks me when it was that I had the melanoma removed from my back; '5 months ago' I say. No answer on his side. The vicinity of the events is obviously suspicious. He asks me whether I have travelled to India recently (presumably there is some infection going on around India at the moment which affects the lymph nodes?). 'Sadly I haven't been to India' I say. He says that as I am otherwise healthy and fit, there is obviously more of a concern (in other words 'unfortunately' I don't look like I have any bugs or infection which would result in lymph node swelling), but we cannot know until we have the FNA results. There is also a nurse in the room, he asks me whether I want to hold on his hand, I say 'I won't say no, if it's on offer’.
The procedure takes about 20 or 25 minutes. The radiologist tells me he is going to take out additional fluid using a thicker needle so that the results of the biopsy will definitely be conclusive. I say ‘go for it’. Besides the FNA, the radiologist also performs an ultrasound scan of my neck, this does not reveal any further abnormalities other than the palpable swollen lymph node. I remember feeling quite relieved at this information, which he shares with me immediately. An ultrasound is a procedure that uses high frequency sound waves to create an image of part of the inside of the body. A gel is put onto your skin to allow a transducer to move smoothly. The transducer is connected to a computer and a monitor where structures of your body are displayed as an image. By the way I have made a note to spend some time in a future post talking about the various type of body scans as it took me some time to get my head round the terminology and what each scan consists in (e.g. CT Scan, PET Scan, MRI, Ultrasound).
I come out of the procedure room and I am mentally exhausted (can you blame me?). My whatsapp is flooded with messages of friends asking how I went on. I start replying (I am generally very good at replying to messages quickly), then I realise that my brain is melting, I need to go out for some fresh air and a walk.
The days following the FNA will prove very eventful and I will be on an emotional roller-coaster. This is not only because of the unfolding of the events connected with my melanoma which will now come thick and fast, but also because I had to face something that I had put off until now: tell my parents about it. About the real possibility that the cancer removed from my skin in January may have spread. Until now I had not said a word as I was living in this great uncertainty and I did not want them to worry unnecessarily. Given that they live in Italy, it was easy not to disclose my medical appointments. But as it happens, they were coming from Italy to London to visit me for a short summer break, so I would not be able to hide it anymore. I just prayed at this point that I could have some good news before I saw them, but unfortunately it did not work out this way and their arrival would coincide with the middle of the storm for me.
The clinic is modern and functional as expected, staff are friendly, I don't need to wait long until I am in the examination room. In my melanoma story, I think this is the first time that I am actually very nervous and anxious during a medical appointment. The procedure is explained to me, a fine needle will be introduced into the area of my neck showing the abnormal node to extract fluid. I will feel no more than a needle pinch and the procedure should not be painful. The area is likely to be left with some bruising. I think I am visibly nervous (am I slightly shaking?) when I lay down on the examination table. I feel like I must explain to the radiologist that I am totally cool with what he is doing, I trust him and I am not concerned at all by the procedure; that the reason why I am upset is that it has now pervasively dawned on me that the reason why the procedure is being done, the reason why I am there, is that there is the real possibility that I may have cancer in a lymph node. He says he understands. I mention my history of malignant melanoma and hence the immediate concerns the doctors and I had. He asks me when it was that I had the melanoma removed from my back; '5 months ago' I say. No answer on his side. The vicinity of the events is obviously suspicious. He asks me whether I have travelled to India recently (presumably there is some infection going on around India at the moment which affects the lymph nodes?). 'Sadly I haven't been to India' I say. He says that as I am otherwise healthy and fit, there is obviously more of a concern (in other words 'unfortunately' I don't look like I have any bugs or infection which would result in lymph node swelling), but we cannot know until we have the FNA results. There is also a nurse in the room, he asks me whether I want to hold on his hand, I say 'I won't say no, if it's on offer’.
The procedure takes about 20 or 25 minutes. The radiologist tells me he is going to take out additional fluid using a thicker needle so that the results of the biopsy will definitely be conclusive. I say ‘go for it’. Besides the FNA, the radiologist also performs an ultrasound scan of my neck, this does not reveal any further abnormalities other than the palpable swollen lymph node. I remember feeling quite relieved at this information, which he shares with me immediately. An ultrasound is a procedure that uses high frequency sound waves to create an image of part of the inside of the body. A gel is put onto your skin to allow a transducer to move smoothly. The transducer is connected to a computer and a monitor where structures of your body are displayed as an image. By the way I have made a note to spend some time in a future post talking about the various type of body scans as it took me some time to get my head round the terminology and what each scan consists in (e.g. CT Scan, PET Scan, MRI, Ultrasound).
I come out of the procedure room and I am mentally exhausted (can you blame me?). My whatsapp is flooded with messages of friends asking how I went on. I start replying (I am generally very good at replying to messages quickly), then I realise that my brain is melting, I need to go out for some fresh air and a walk.
The days following the FNA will prove very eventful and I will be on an emotional roller-coaster. This is not only because of the unfolding of the events connected with my melanoma which will now come thick and fast, but also because I had to face something that I had put off until now: tell my parents about it. About the real possibility that the cancer removed from my skin in January may have spread. Until now I had not said a word as I was living in this great uncertainty and I did not want them to worry unnecessarily. Given that they live in Italy, it was easy not to disclose my medical appointments. But as it happens, they were coming from Italy to London to visit me for a short summer break, so I would not be able to hide it anymore. I just prayed at this point that I could have some good news before I saw them, but unfortunately it did not work out this way and their arrival would coincide with the middle of the storm for me.
 |
| Just after the fine needle aspiration - 17 June 2014 |
Tuesday 28 October 2014
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.
--------------------------------
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).
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.
--------------------------------
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).
Thursday 16 October 2014
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.
Friday 10 October 2014
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.
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.
Friday 3 October 2014
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:
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.
=================================
It is important to note:
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.
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 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.
=================================
Survival rates for melanoma skin cancer by stage
Source: www.cancer.orgIt 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.
Thursday 2 October 2014
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.
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 |
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.
========================
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.
========================
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]
Stage 3C
- The melanoma is not ulcerated, has spread to small areas of skin or lymphatic channels, but nearby lymph nodes do not contain melanoma cells
- 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
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]
- The melanoma may or may not be ulcerated and has spread to lymph nodes that have joined together
Monday 29 September 2014
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:
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.
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 |
Sunday 28 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:
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.
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.
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.
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.
Subscribe to:
Posts (Atom)