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:

• 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!)

I would be absolutely fascinated to find out why you are reading this if you are someone who does not know me and would love it if you either left a comment on a post (which is a bit public), or dropped me an email woods.phil0@gmail.com (which is private) , to let me know. It would satisfy my curiosity and might help me to make some of the posts a bit more relevant as I am aware that I often ramble..................

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:

1. Diagnosis
2. Treatment options
3. Dealing with the NHS
4. Staying (as) sane (as when you started)

Diagnosis
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

The overall advice is stay in control. It is your life and your treatment.

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