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.
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| Just after the fine needle aspiration - 17 June 2014 |
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