I had not anticipated posting anything here until after my appointment at UCLH next wednesday, but, as ever, events have prompted me to come back and bore you all to tears again......................
The minor and slightly laughable bit is that I have now received a total of 3 letters inviting me to the clinic next week. 2 offer the same appointment time, the third offers a time when the clinic is not actually running! A quick telephone call cleared this one up, but more resource needlessly wasted (both their and mine). This was entertaining, but not really worthy of note.
The real reason for this post is the telephone call that I received this evening.............
A junior doctor had evidently been detailed to call me following the multi-disciplinary team meeting at which my MRI scan and biopsy results were discussed. I feel a bit sorry for him as he was obviously given the "crap" job. It did not help that his accent was extremely heavy and his ability to understand me was probably compromised by the differences in accent. The upshot was that they had decided that focused therapy was not appropriate for me; would I like them to refer me back to Medway for surgery or radiotherapy? After a couple of minutes, it became patently obvious that discussing this over the telephone was a) not appropriate and b) was, as the americans put it, way beyond his pay grade. I patiently explained that neither was an option that I would seriously consider so no thanks, I would discuss this at next week's appointment. I don't think that this was the answer that I was expected to give. Poor chap, it wasn't his fault that he was given the difficult person.
If I accept the statement from the junior doctor that focused therapy is not for me, that seems to leave two choices, neither of which is acceptable to me: submit to one of the old fashioned treatments with their attendant high risk of long term disability, or let nature take its course. It was whilst pondering this one (and coming down on the side of nature rather than intervention) that a thought struck me:
The NHS is geared to specialists taking on whole conditions and doing whatever their particular branch of the specialty is to effect a "cure". What they are not good at is applying their skills in combination with other specialists and sharing the treatment between them. If focused therapy can get rid of most of the problem, but not all of it, then it seems quite logical to me for them to deal with whatever they can and leave the rest. I can then consider using one of the older, cruder, methods to deal with whatever is left and minimise the potential collateral damage.
The above approach may be a step too far for the NHS as there is little incentive for them to do anything that does not fit into their strict protocols, or requires imagination, so the second issue is one of incentive. Now call me cynical, but the one thing that I have found to unite 98% of consultants (Bob and Alastair excepted) is money........lots and lots of money........so adequate treatment might require a foray into the world of private medicine. A pity, given that the NHS has the skills, but if it is unwilling to deliver treatment that people want, there is no real option. A real cynic might say that bits of it are geared to sending people down that route, after all most NHS consultants also have a private practice..................
A song? This very short theme tune sort of sums up the NHS:
https://www.youtube.com/watch?v=F9S7yhD5M9A
Thursday 26 February 2015
Tuesday 17 February 2015
What have I learnt so far?
It struck me the other day that it might be useful to summarise some of the things that I have learned along the journey so far. It also struck me that I know virtually nothing about you, the reader. It is very unlikely that everyone reading this knows me, so I have no idea why you are reading it. My guesses as to why are:
OK, introduction over with. Given that my ignorance of my audience is virtually complete, I will separate what I think are the relevant bits of information, advice etc into headings so you do not have to wade your way through a whole load of stuff that will bore you. The handy headings are:
The key indicator that you might have prostate cancer is a raised PSA (Prostate Specific Antigen) level. Normal is less than 4 for younger men, but it may be as high as 7 for older people. It is not an exact diagnostic tool and can be raised if you have recently had sex or had your prostate stimulated by other means e.g. colonoscopy, anal sex, but is a reasonable pointer.
Given that prostate cancer generally affects men in middle age and beyond, it would seem sensible that the NHS would provide a screening service. Not so! Unless you present to your GP with symptoms, they will not do a PSA test. My first bit of learning was to fake a symptom or two in order to get a PSA test if you do not have any. The symptoms are easy to find on the internet.
Once it has been established that your PSA level is too high, the only way of proving one way or another whether you have cancer is to go for a biopsy. This will usually be accompanied by an MRI scan etc. By the end of it, you will be given a "Gleason score" which ranges from 0-10. Under 5 and they will usually not offer treatment, but will monitor you regularly. Between 5 and 10 indicates a need for treatment. This is an important number as it will be part of the determination of which options are available or recommended.
If you have been diagnosed, the next stage is.............
Treatment options
The options open to you will depend on the nature and extent of the cancer. As far as I understand it, each comes with its own risks or potential benefits. As this is just my experience and not a learned medical text, please treat what follows as a rough guide; it is not exhaustive and may not be strictly accurate, but is my understanding of things.
There are risks associated with all treatment options which include:
Impotence
Incontinence
Incomplete removal of the tumour(s)
It is for each person to make up their own mind within the limits that clinicans will set (although this can always be challenged, see "Dealing with the NHS" below) and to find the balance that suits them. To help you judge the bias that will inevitably creep in, my priority is what I refer to as "preservation of structure" i.e. the least possible collateral damage. This may entail trading a few years of life expectancy, but that is my decision. Others may think that certainty of removal and longevity are more important.
Surgery
Along with radiotherapy, surgery is part of the NHS front line in the treatment of prostate cancer. Radical prostatectomy is the technical term for removing a prostate either through human or robotic (guided by a human) surgery. It is a pretty certain way of ensuring that the cancer is removed as long as it has not spread beyond the prostate, but does come with some downsides........
Anything that breaches the skin, especially in a hospital, is inherently risky; infection, accidental damage etc are a real possibility
No matter how good the surgeon or robot, there is a pretty high chance of collateral damage to the key structures around the prostate. These include the nerves that enable erection and the urinary sphincter. As a result, there is a significant risk of impotence and / or incontinence. A lot of people see the risks as a fair trade for peace of mind.
Radiotherapy
Does what is says on the tin. Radiation is focused on the tumour in sessions over several weeks with a view to destroying it. This is usually accompanied by anti-androgen drugs which have some unfortunate short term effects, but can be reversed. The key bit about raidiotherapy is that it is still a fairly blunt instrument and its full effects will not be known for some months after treatment finishes. It does not breach the skin, so the risks associated with that are removed, but the potential collateral damage to structures remains, although not necessarily so immediately apparent.
Focused therapies
These can be difficult to access in the UK, but are the latest range of treatments available in this country.They usually still have the status of "Clinical Trial", so are only available in the teaching hospitals, and come with limits. As far as I can work out, there are three main focused therapies available: HIFU (High Intensity Focused Ultrasound), Cryotherapy and Brachytherapy. My knowledge of the latter two is very limited and I am finding out about the first as I go. Basically, they are very focused ways of delivering energy to destroy a tumour without breaking the skin unduly: ultrasound, freezing, radiation. The benefits are that they only target the tumour and the risk of damage to other structures is minimised. The potential downside is that they are limited to people whose Gleason score is 7 or less and, given their status as clinical trials, may not get the whole thing.
You pays your taxes and makes your choice..................
Dealing with the NHS
The first bit of advice is avoid the NHS if you possibly can and get treatment from a private hospital.
The NHS will inevitably push you towards what is easiest for it. Easiest does not necessarily mean least complex, it just means that it is the way they do things. A classic illustration of this was my "discussion" with clinical staff the other week who assumed that they would sedate me despite the fact that I did not want to be sedated and did not need to be. I avoided having to be observed by nursing staff whilst occupying a bed to come round which I see as a saving; they saw it as my refusal to follow the rules (and undermined their view that they did not have enough beds or staff!).
The golden rules that I have adopted are:
Staying sane
Not easy............at first it seems lke the world is about to end, but that passes. Always keep in mind that the vast majority of people diagnosed with prostate cancer survive it and die of something else. Once you get that, the rest is about managing the stress of treatment and decision making. A bit like any management job, you are balancing Risk, Choice and Expectation.
Have a rant. This does no harm and can do a lot of good providing you do not upset those around you too much
Do something for yourself. This gets you past the rant and can make you feel better. I had a tattoo, but everyone will have something different that will do the trick
Stay in control of events. This helped me, but I know that some people prefer to just go with the flow. For me, control is important as it makes me feel as if I am actually doing something rather than just waiting for other people.
Do not over research. If you start trying to analyse statistics and understand everything, it will drive you mad. Get an overview and set a direction / limits i.e. have a strategy. Statistics in particular can drive you nuts as they generally represent researchers' bias rather than being absolute; they can also seriously mislead. If you do not believe me, ponder this one: "100% of people who breathe fresh air die". Common sense tells anyone that failing to breathe also has serious consequences...................
Write a blog. Even with minimal feedback, the act of writing it all down can be very therapeutic and often helps you see some of the absurdities.
Don't give up. Says it all really.................
If you got this far: well done!! If you want to discuss any of my experiences etc., or just want someone to reflect with / sound off with, please feel free to contact me. I guarantee that I will get back to you.
Now a song. This one popped into my head whilst writing and seemed almost relevant:
https://www.youtube.com/watch?v=e89Awhxjxq8
- You know me (motivations for reading may vary though!)
- You have been involved in my journey thus far in some way (I know that at least one Hospital PR department was reading it at one point)
- You have prostate cancer, or suspect you have, and want to see what someone's experiences have been
- You stumbled across this blog by accident (that would have been "hello" followed quite quickly by "goodbye" I would imagine)
- You found your way here and are so entertained by the quality of the writing style that you cannot resist coming back (very unlikely!)
OK, introduction over with. Given that my ignorance of my audience is virtually complete, I will separate what I think are the relevant bits of information, advice etc into headings so you do not have to wade your way through a whole load of stuff that will bore you. The handy headings are:
- Diagnosis
- Treatment options
- Dealing with the NHS
- Staying (as) sane (as when you started)
The key indicator that you might have prostate cancer is a raised PSA (Prostate Specific Antigen) level. Normal is less than 4 for younger men, but it may be as high as 7 for older people. It is not an exact diagnostic tool and can be raised if you have recently had sex or had your prostate stimulated by other means e.g. colonoscopy, anal sex, but is a reasonable pointer.
Given that prostate cancer generally affects men in middle age and beyond, it would seem sensible that the NHS would provide a screening service. Not so! Unless you present to your GP with symptoms, they will not do a PSA test. My first bit of learning was to fake a symptom or two in order to get a PSA test if you do not have any. The symptoms are easy to find on the internet.
Once it has been established that your PSA level is too high, the only way of proving one way or another whether you have cancer is to go for a biopsy. This will usually be accompanied by an MRI scan etc. By the end of it, you will be given a "Gleason score" which ranges from 0-10. Under 5 and they will usually not offer treatment, but will monitor you regularly. Between 5 and 10 indicates a need for treatment. This is an important number as it will be part of the determination of which options are available or recommended.
If you have been diagnosed, the next stage is.............
Treatment options
The options open to you will depend on the nature and extent of the cancer. As far as I understand it, each comes with its own risks or potential benefits. As this is just my experience and not a learned medical text, please treat what follows as a rough guide; it is not exhaustive and may not be strictly accurate, but is my understanding of things.
There are risks associated with all treatment options which include:
Impotence
Incontinence
Incomplete removal of the tumour(s)
It is for each person to make up their own mind within the limits that clinicans will set (although this can always be challenged, see "Dealing with the NHS" below) and to find the balance that suits them. To help you judge the bias that will inevitably creep in, my priority is what I refer to as "preservation of structure" i.e. the least possible collateral damage. This may entail trading a few years of life expectancy, but that is my decision. Others may think that certainty of removal and longevity are more important.
Surgery
Along with radiotherapy, surgery is part of the NHS front line in the treatment of prostate cancer. Radical prostatectomy is the technical term for removing a prostate either through human or robotic (guided by a human) surgery. It is a pretty certain way of ensuring that the cancer is removed as long as it has not spread beyond the prostate, but does come with some downsides........
Anything that breaches the skin, especially in a hospital, is inherently risky; infection, accidental damage etc are a real possibility
No matter how good the surgeon or robot, there is a pretty high chance of collateral damage to the key structures around the prostate. These include the nerves that enable erection and the urinary sphincter. As a result, there is a significant risk of impotence and / or incontinence. A lot of people see the risks as a fair trade for peace of mind.
Radiotherapy
Does what is says on the tin. Radiation is focused on the tumour in sessions over several weeks with a view to destroying it. This is usually accompanied by anti-androgen drugs which have some unfortunate short term effects, but can be reversed. The key bit about raidiotherapy is that it is still a fairly blunt instrument and its full effects will not be known for some months after treatment finishes. It does not breach the skin, so the risks associated with that are removed, but the potential collateral damage to structures remains, although not necessarily so immediately apparent.
Focused therapies
These can be difficult to access in the UK, but are the latest range of treatments available in this country.They usually still have the status of "Clinical Trial", so are only available in the teaching hospitals, and come with limits. As far as I can work out, there are three main focused therapies available: HIFU (High Intensity Focused Ultrasound), Cryotherapy and Brachytherapy. My knowledge of the latter two is very limited and I am finding out about the first as I go. Basically, they are very focused ways of delivering energy to destroy a tumour without breaking the skin unduly: ultrasound, freezing, radiation. The benefits are that they only target the tumour and the risk of damage to other structures is minimised. The potential downside is that they are limited to people whose Gleason score is 7 or less and, given their status as clinical trials, may not get the whole thing.
You pays your taxes and makes your choice..................
Dealing with the NHS
The first bit of advice is avoid the NHS if you possibly can and get treatment from a private hospital.
The NHS will inevitably push you towards what is easiest for it. Easiest does not necessarily mean least complex, it just means that it is the way they do things. A classic illustration of this was my "discussion" with clinical staff the other week who assumed that they would sedate me despite the fact that I did not want to be sedated and did not need to be. I avoided having to be observed by nursing staff whilst occupying a bed to come round which I see as a saving; they saw it as my refusal to follow the rules (and undermined their view that they did not have enough beds or staff!).
The golden rules that I have adopted are:
- form an idea of what you want out of each stage
- ask questions (it helps if you have thought them through beforehand)
- challenge clinicians if they are not doing what you want. You have nothing to lose by challenging, but be prepared to change your mind if they advance a convincing argument
- rehearse every consultation beforehand so you can take control
- remember that they can only recommend, they cannot compel you to do anything. The Mental Capacity Act enshrines in law your right to make decisions with which they do not agree, unless they can prove that you lack the capacity for decision making (see "Biopsy the second")
- if you know anyone with power or influence in the NHS, Care Quality Commission, Government, BMA etc. drop their name into conversation if things get difficult.
- do your research on the people treating you; understand where the likely pressure points are in case you need them
Staying sane
Not easy............at first it seems lke the world is about to end, but that passes. Always keep in mind that the vast majority of people diagnosed with prostate cancer survive it and die of something else. Once you get that, the rest is about managing the stress of treatment and decision making. A bit like any management job, you are balancing Risk, Choice and Expectation.
Have a rant. This does no harm and can do a lot of good providing you do not upset those around you too much
Do something for yourself. This gets you past the rant and can make you feel better. I had a tattoo, but everyone will have something different that will do the trick
Stay in control of events. This helped me, but I know that some people prefer to just go with the flow. For me, control is important as it makes me feel as if I am actually doing something rather than just waiting for other people.
Do not over research. If you start trying to analyse statistics and understand everything, it will drive you mad. Get an overview and set a direction / limits i.e. have a strategy. Statistics in particular can drive you nuts as they generally represent researchers' bias rather than being absolute; they can also seriously mislead. If you do not believe me, ponder this one: "100% of people who breathe fresh air die". Common sense tells anyone that failing to breathe also has serious consequences...................
Write a blog. Even with minimal feedback, the act of writing it all down can be very therapeutic and often helps you see some of the absurdities.
Don't give up. Says it all really.................
If you got this far: well done!! If you want to discuss any of my experiences etc., or just want someone to reflect with / sound off with, please feel free to contact me. I guarantee that I will get back to you.
Now a song. This one popped into my head whilst writing and seemed almost relevant:
https://www.youtube.com/watch?v=e89Awhxjxq8
Tuesday 10 February 2015
Biopsy the second
Before I relate today's entertainment, a quick statement in case anyone should get the wrong impression: the staff I came into contact with were uniformly excellent, the comedy was purely situational.
I was instructed to arrive at 07:30. Given that it is a 15 minute drive to the station, an hour's train ride and a 15 minute walk at the other end, this meant getting up at an hour I know exists but had rarely seen.
07:30 prompt, I arrive at the reception area along with two other hapless individuals. No reception as it is too early, but a nurse appeared about 10 minutes later, called out our names and instructed us to follow her. A small crocodile fell into step and we were led to the day surgery unit preparation / recovery room. Each of us was allocated a bed (mine was number 8) and invited to sit. I looked at the chair next to the bed and decided that I would sit on the bed as it might have less wildlife living in it. I kid you not, I might own dogs and a horse, with hands on experience of everything they imply, but the chair was not an object that even I would consider sitting on. I have tried my hardest to upload a picture here, but to no avail. It can be seen on my Twitter page: @phil_woods
The next three hours were pretty uneventful. I had my blood pressure taken, was asked the same questions several times, was tagged, explained that I would not require sedation and was told that they had seen the emails. Read the newspaper cover to cover at least twice.
Then.....action! Could I please change into the two gowns provided? This was more interesting than it sounds as one of them was obviously for what is known as a bariatric patient. For those not conversant with NHS code, bariatric means people with a significant waist control problem (I think it is politically incorrect for me to refer to "fat", "obese" etc, so I will not.......... Oops!). Given that I do not have a waist issue, fitting all of the capacious gown around my svelte form was a challenge!
Into the "Procedure room" and asked if they had some entonox available as requested. "Oh dear, we got the message, but don't think we can find any". Call me bonkers (believe it or not, people do), but a hospital the size of UCLH with no entonox?
Full marks to the anaesthetic nurse though, she beetled off and came back with a full scale anaesthetic apparatus. No demand valve, but I was quite happy to use a mask as and when required. Not sure whether it was entonox or something a bit stronger, but it was good :)
The fun started when the biospy had finished. I was invited to lie on a trolley to be wheeled back to "recovery". Off we went down the corridor and into the recovery room.............well, not quite. Got there to find that they had no room. Much fussing and checking other places before I was wheeled back to the procedure room. Where I sat.......and sat.......and sat.
After about 10 minutes, during which I chatted with the nurses about blog posts, contacts in the NHS, Forest Hill, Grenada etc, patience wore a bit thin. I asked them to send someone to get my clothes so I could get changed and go. I was greeted with expressions of utter horror! "They will not discharge you until you have a) passed water and b) been clerked out, so you cannot leave". I reminded them of the Mental Capacity Act which says that people's decisions must be respected no matter whether they are viewed as "good", unless they can be demonstrated to lack (mental) capacity. For good measure I did offer that the Mental Health Act would allow them to detain me against my will..............
This very quickly produced the Sister in charge, who tried to engage me in conversation, and the doctor. Small procedure room, 4 nurses, one doctor and me. Eventually, enter a fifth nurse, this time with my clothes. Got dressed (all but one of the nurses left the room whilst I did it). I was asked to sign a disclaimer as I had not followed the rules and allowed out at last. More comedy ahead though.............I think that some of the names I dropped had a bit of an effect.
I was met outside the door by the doctor who asked me what they could do to improve things. He obviously expected me to say "more beds" and was a bit surprised when I said that they could improve their throughput by offering a local anaesthetic as the default with sedation available for those who want it. If I had not been determined, they would have sedated me and I would have had to stay there for hours before I could physically leave.
Next, I had to run the gauntlet of apologetic nurses. I am not sure how many times they apologised, but it was a lot. I tried to tell them that they had been great, but they insisted on apologising some more. A bit sad that a broken system forces professional staff to abase themselves for fear of a complaint. I will end as I began: the staff were great!
Apparently, I will be invited back to an outpatient consultation in about 3 weeks. Not exactly fast and furious, but after 7 months I have stopped caring.
Song is a bit of a problem...........this one is short, but well worth listening to
https://www.youtube.com/watch?v=JzbhEK3TuIc
I was instructed to arrive at 07:30. Given that it is a 15 minute drive to the station, an hour's train ride and a 15 minute walk at the other end, this meant getting up at an hour I know exists but had rarely seen.
07:30 prompt, I arrive at the reception area along with two other hapless individuals. No reception as it is too early, but a nurse appeared about 10 minutes later, called out our names and instructed us to follow her. A small crocodile fell into step and we were led to the day surgery unit preparation / recovery room. Each of us was allocated a bed (mine was number 8) and invited to sit. I looked at the chair next to the bed and decided that I would sit on the bed as it might have less wildlife living in it. I kid you not, I might own dogs and a horse, with hands on experience of everything they imply, but the chair was not an object that even I would consider sitting on. I have tried my hardest to upload a picture here, but to no avail. It can be seen on my Twitter page: @phil_woods
The next three hours were pretty uneventful. I had my blood pressure taken, was asked the same questions several times, was tagged, explained that I would not require sedation and was told that they had seen the emails. Read the newspaper cover to cover at least twice.
Then.....action! Could I please change into the two gowns provided? This was more interesting than it sounds as one of them was obviously for what is known as a bariatric patient. For those not conversant with NHS code, bariatric means people with a significant waist control problem (I think it is politically incorrect for me to refer to "fat", "obese" etc, so I will not.......... Oops!). Given that I do not have a waist issue, fitting all of the capacious gown around my svelte form was a challenge!
Into the "Procedure room" and asked if they had some entonox available as requested. "Oh dear, we got the message, but don't think we can find any". Call me bonkers (believe it or not, people do), but a hospital the size of UCLH with no entonox?
Full marks to the anaesthetic nurse though, she beetled off and came back with a full scale anaesthetic apparatus. No demand valve, but I was quite happy to use a mask as and when required. Not sure whether it was entonox or something a bit stronger, but it was good :)
The fun started when the biospy had finished. I was invited to lie on a trolley to be wheeled back to "recovery". Off we went down the corridor and into the recovery room.............well, not quite. Got there to find that they had no room. Much fussing and checking other places before I was wheeled back to the procedure room. Where I sat.......and sat.......and sat.
After about 10 minutes, during which I chatted with the nurses about blog posts, contacts in the NHS, Forest Hill, Grenada etc, patience wore a bit thin. I asked them to send someone to get my clothes so I could get changed and go. I was greeted with expressions of utter horror! "They will not discharge you until you have a) passed water and b) been clerked out, so you cannot leave". I reminded them of the Mental Capacity Act which says that people's decisions must be respected no matter whether they are viewed as "good", unless they can be demonstrated to lack (mental) capacity. For good measure I did offer that the Mental Health Act would allow them to detain me against my will..............
This very quickly produced the Sister in charge, who tried to engage me in conversation, and the doctor. Small procedure room, 4 nurses, one doctor and me. Eventually, enter a fifth nurse, this time with my clothes. Got dressed (all but one of the nurses left the room whilst I did it). I was asked to sign a disclaimer as I had not followed the rules and allowed out at last. More comedy ahead though.............I think that some of the names I dropped had a bit of an effect.
I was met outside the door by the doctor who asked me what they could do to improve things. He obviously expected me to say "more beds" and was a bit surprised when I said that they could improve their throughput by offering a local anaesthetic as the default with sedation available for those who want it. If I had not been determined, they would have sedated me and I would have had to stay there for hours before I could physically leave.
Next, I had to run the gauntlet of apologetic nurses. I am not sure how many times they apologised, but it was a lot. I tried to tell them that they had been great, but they insisted on apologising some more. A bit sad that a broken system forces professional staff to abase themselves for fear of a complaint. I will end as I began: the staff were great!
Apparently, I will be invited back to an outpatient consultation in about 3 weeks. Not exactly fast and furious, but after 7 months I have stopped caring.
Song is a bit of a problem...........this one is short, but well worth listening to
https://www.youtube.com/watch?v=JzbhEK3TuIc
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