Wrongly routed

The sheer terror that I felt on being told I had cancer is not buried as deeply as I’d thought. It came right to the fore a few days ago when a really close friend of mine who I worked with up to 4 years ago was also diagnosed with prostate cancer.

Those of us with this disease all have our own personal story but, if there’s one thing we all have in common, it’s that a prostate cancer diagnosis changes your life in ways you would never have imagined and that’s just how it is for him and his wife. In the space of just a few weeks their world has been turned upside down and they both now have decisions to make that no one ever prepares you for.

People usually rally round at times like these and he’s been truly overwhelmed by the support he’s got. I think he feels like he doesn’t deserve it but considering the support he’s consistently given to others I’m not surprised at the reaction of the people who know him. No one deserves to get this disease but it strikes me as being particularly undeserved when it happens to someone like him who has always tried to help others and has gone not just the extra mile but several extra miles including raising money for both Prostate Cancer UK and Macmillan Cancer Support.

From what he’s been told so far his cancer looks to be both even more aggressive and more advanced than mine. Lots of men who get prostate cancer get the “pussycat” version, the sort that lays on your lap and gently purrs for years and years or possibly gives you the occasional scratch to let you know it’s there, and that could be why the myth prevails that prostate cancer is nothing to worry about. But a myth is exactly what it is because there are others, guys like us, who don’t get the pussycat, we get the “tiger” and some tigers can be more vicious than others.

Since what happened to me he’s been having regular PSA tests so, although his cancer has moved too fast to be curable it is, nevertheless, still treatable. Had he not had regular PSA tests his cancer could well have got to the stage where very little could be done but, instead, it looks like he will have several treatments available that can keep him around for a good while yet. I certainly hope so!

That’s why, as shocked as he’s feeling (as all of us who know him are feeling too!), he’s already thinking of others and encouraging the other men he knows to get a PSA test because although it gets a lot of bad press it’s the best indicator there is (currently) to ascertain whether or not you could have a problem with your prostate.

You don’t have to be in one of the higher risk groups to get prostate cancer – he wasn’t and neither was I (unless you count being in our mid-50s when we got sick). Whoever you are, don’t kid yourself that it can never happen to you. If you don’t get tested for yourself and your family, if you know him, get tested for Steve.

Click on this link for more info about the PSA test: Behind the headlines: Symptoms, screening and PSA – should I have a test?


High hopes

I’ve had a few more side effects during the fourth cycle of chemo and the existing pain lasted longer, although it got less and less approaching the end of the 3 weeks. The most unwelcome was the down feeling I felt during the first week or so, like the proverbial black cloud descending (see previous post for proof). It’s not exactly a new side effect, but pre-cancer and pre-treatment I can’t remember having experienced it, certainly not to such an intensity. I’m not sure if that was down to the relentless nature of the chemo or the chemo itself or the hormone tablets that I’m also taking, as hormone therapy is notorious for affecting your mood. Whatever the cause it’s bloody unpleasant (this week’s massive understatement). When the black cloud dispersed after about a week it was not a moment too soon. 

I have chemo cycle number 5 today and I’m going into it on a high as I got my latest PSA result yesterday. I’m pleased to report the chemo is having the desired effect as my PSA level is down again. It now stands at 0.158, the lowest it’s ever been. I know I mustn’t get my hopes up, I’ve done that before and sworn I wouldn’t do it again, but it’s difficult not to. I hope it carries on going down and stays down for a long time. I’m still aiming to get to 90. 

“I said I’d never stick needles into my pride and joy, but now I say bring ‘em on”

And another “guest post” that I wrote – this time for Prostate Cancer UK’s News and Views section and entitled “I said I’d never stick needles into my pride and joy, but now I say bring ‘em on, which was published on their site on April 7th 2015.

Prostate Cancer UK give a “warning” due to the adult content of the post and tell readers “Be prepared for graphic detail“.   You should have seen the unedited version!

Please Click here to read it.

Bucket List Time

There’s an old saying “you can’t judge a book by its cover“. I think I must be a bit like that. Overall, I feel OK. I look fairly healthy, too. It’s a shame that bad things are going on inside of me.

On the outside and the inside I had a really good Christmas and New Year period, although it seems ages ago now. Since then the highlight was my belated retirement drink in mid-January, 3 months after officially finishing work. What an afternoon and evening that turned out to be, far exceeding my wildest expectations in people and atmosphere. It was brilliant seeing so many of the friends who I’ve worked with during my 20 years on the Railway. There must have been about 120 at one point. It got very intimate in the pub! Great bunch that they are they raised £800 to see me off, which I’ve split 50/50 between Prostate Cancer UK and Macmillan Cancer Support.

I’m especially pleased about the money that was raised because those two cancer charities do so much good work and have been a much needed source of support to me and my partner, it’s nice to be able to give a little back. Even more now that my “badly behaved intermediate risk” prostate cancer is being a pain in the arse, sometimes literally. Instead of quietly dying after being zapped with radiation the cancer has either had a rebirth or was missed by the radiotherapy. Either way it’s currently chucking out increasing amounts of Prostate Specific Antigen (PSA for short).

Considering I should have zero PSA because I no longer have a prostate to produce it, the stuff can only be coming from prostate cancer cells. So I was sent for a Choline PET Scan last week to find out where the little buggers were hiding and the results were back yesterday, just in time for my latest appointment with my oncologist. It showed the cancer has spread to my lymph nodes.

While it was a bit of a shock it was not entirely unexpected as I’d been told that was a possibility. What did shock me, though, was the answer to the question I put to my fantastic Macmillan nurse (I’ve actually got two fantastic Macmillan nurses and I wouldn’t want to leave one out). I asked “that” question. You know, the one we all want to ask, but are too frightened to. “How long have I got?”

I’ve always said I’d rather know the truth but before answering she made sure and, looking me straight in the eyes, asked if I really did want to know and I replied “yes“.

I expected to be told 10 years. Why 10 years? Well, it’s because everything I’ve read downplays prostate cancer. Sometimes I’ve read things that have made me feel like a bit of a fraud compared to someone with a “real” cancer. I didn’t feel like a fraud after she answered my question. Seven years. Bloody ‘ell! She said it could be more, but it could be less. (I’d like to reassure anyone reading this who might now be freaking out. We are all different).

Seven years sounds like a long time if you’re talking about how many more years you have to work before putting your feet up and collecting your pension. With work seven years might as well be seventy. Seven years are absolutely not a long time when it could be all that you’ve got left. It takes on a whole new meaning.

I must admit it shook me a lot. I went cold and I could feel my skin tingling. I had an urge to run, but where to? The bastard cancer would catch up eventually. My partner was silent. I asked him if he was OK. Yes came the reply. Bloody liar. I think my nurse was more upset than me, maybe because the enormity of it was immediately apparent to her.

For me it’s taken longer. I’m slowly digesting this major piece of information. I am very glad to have been given an honest answer to my question as I’d have hated to have been treated like a child and spared the truth.

We chatted some more, me and the nurse hugged. Not sure who was hugging whom. The mood was lifted when nurse number 2 walked in and caught us in an embrace. “What’s going on here?” she asked, so I hugged her too so she couldn’t snitch on us. I was told this is now bucket list time. I think that phrase struck a chord. It’s one you read in the papers about other people, it doesn’t happen to you, except it has. I just wish my mind would clear so I could decide what should go on my bucket list because the only thing I could think of was I’d like to drive a train again one more time. My god, I must be worse than I thought.

Radiotherapy Sessions – 3 down, 29 to go

Tiredness and fatigue caused by radiotherapy are amongst several side effects mentioned in the info put out by Macmillan Cancer Support and Prostate Cancer UK. Their booklets and websites are well worth a look but there’s nothing like personal experience for learning. I’ve read that some people suffer no side effects. I’ve also read the effects are more likely to occur, if at all, towards the end of the treatment but, here I am, three days in, and I’m knackered. I can’t remember reading anywhere how quickly you can be affected and I hadn’t thought it might be this fast. I suppose my tiredness might not be down to the actual treatment, per se, but could be down to the change of routine (combined with the lack of routine, if that makes sense) – my three appointments so far have been at different times of the day – or it could be anxiety, the travelling to and fro, the change of diet or, for all I know, it could be the weather but, whatever the reason, things are already becoming an effort.

By the time the first day of the radiotherapy dawned I’d been on my low fibre / low residue diet for a week. It came as a surprise, then, that I was awoken at 5am by the urgent churning of my stomach, signalling that I’d better get to the toilet, and pronto. I have no idea what caused me to fall victim to the trots, but I’d hazard a guess and say it was stress at the prospect of having photon particles aimed at my torso. For some reason I keep on thinking of the Starship Voyager’s photon torpedoes. If you’re not a Star Trek fan that won’t mean anything, but I reckon you’d still appreciate that having any sort of a torpedo aimed at you would make you crap your pants.

So, it was with some trepidation that me and my partner set off several hours later, with him driving, for the 30 mile journey to Reading. We weren’t so much worried about the impending treatment as much as whether or not we’d make it without me needing clean trousers en route or, worse, a new passenger seat.

We got to the Berkshire Cancer Centre about an hour later and it felt like my first day at school. I didn’t know where to go or what to do and all the older kids who’d been there last term were no help at all. Then one of the teachers, I mean staff, came to my rescue. Yes, she said, you put your card in here, you can sit in there. Someone will come and find you wherever you are. The water fountain is over there. Oh, there are no cups, I’ll get some for you. Then, within minutes someone else came to get me to go through everything again and to see if I was OK and offering to help carry the three lots of water that I’m required to drink before every radiotherapy session starts. The welcome on my first treatment day reflected my first visit there for my planning session – nothing was too much trouble. My whole experience of this place to date has been good – our NHS at its best. So what if it doesn’t have carpet and “free” tea. I heard some of the people in the waiting room talking about the centre’s other site in Bracknell and saying that was even better. I’m transferring there from session 9 onwards as it’s a bit closer to home so I’ll find out for myself.

About half an hour after finishing the water on the first day, a student radiographer came to get me. The half hour wait is part of the process so your bladder has time to fill up. I was shown to a changing room where it was into a hospital gown, then a short walk to one of several treatment rooms. I always feel a plonker in a hospital gown. Wearing slippers or flip-flops with one is bad enough but the whole plonker-look effect is enhanced by the addition of shoes and socks. I got some startled looks when I held my iPhone out and asked if someone could please take some photos. The student who’d come to get me said she would take them and looked even more startled than before when I asked if she knew how to use an iPhone. Her startled expression changed to that “doesn’t everybody know?” look that old farts like me get from anyone under the age of 25. I get them more and more these days. I can’t think why. I found out her look was justified as she took loads of very good photos, all part of the service, and none of them showed gown, shoes and socks together!  

A lot of time in the treatment room was spent getting me in the right position on the slab. I was told not to try and help but to let the radiographers shift me the millimetres they needed to. There’s a support for your neck and head, another to go behind your knees and a third that your feet rest in. As hard as the slab is, it wasn’t uncomfortable, despite laying on it for almost three quarters of an hour on the first day. I was told the first treatment appointment is the longest but every treatment has to be aimed precisely in order to make sure the beams hit the right place and nowhere else. If they hit the bladder or the bowel, for instance, that could possibly cause different cancers to form in those places in the future, as well as causing other problems. That’s why, before they started my treatment, I had an ever increasing number of radiographers pouring over me going through every hair with a fine tooth comb and a torch looking for one of the tattoos they’d done a couple of weeks before, the elusive one hidden in the dense undergrowth just north of my dangly bits. They finally traced it and were able to carry on. After the first treatment finished the elusive tattoo was done again by the same friendly young guy who had done it a couple of weeks before. I’m pleased to report his hands were much warmer this time. I still can’t see the dot, but he must have sorted it as on Days 2 and 3 it didn’t take long to find.

I was told a CT scan is done as standard before my first three treatments and then randomly throughout the course. Amongst other things it shows them whether or not my bowel and bladder are both where they should be. Despite my churning guts it confirmed that my bowel was empty, my bladder full and both were indeed in the right position. The only problem highlighted was that I was arching my back slightly and my pelvis was not in the same position as it had been during my original planning session. Still within tolerance, but not the same. Most people of my age have acquired a dodgy back and I found out when I had a bone scan 6 months ago that I’d got myself two slipped discs. I don’t like to do things by halves. It could be those that are causing me to arch on the radiotherapy table even though I take painkillers a couple of hours before each treatment to help but I’ve now been told I might want to try relaxation exercises as well.

When the radiotherapy treatment started on the first day I thought I could feel it. It was not a painful feeling but like very dull pin pricks inside in different places. I thought there was some sort of sensation on the second day but on the third I didn’t notice anything. The treatment itself doesn’t last that long – less than 10 minutes, but it feels longer, especially the first one.

I’ve found the professionalism of the radiographers and their attention to detail very reassuring. Most people only ever see a radiographer if they need an X-ray and probably think that’s all they do. I’ve found out different and it’s been a revelation to me.

It’s early days yet and I know lots can happen between now and the final daily session sometime towards the end of July but so far, so good.

I wasn’t forced to have radiotherapy but I’ve had surgery and the cancer’s still there and the PSA blood level is still going up, so I didn’t feel I had a choice about going ahead with it. If this doesn’t get rid of the cancer I’m told it then ceases to be curable but remains controllable. In that case the next treatment to try would probably be hormone therapy but, hopefully, it won’t come to that.

Whatever happens in the future, a few days ago I had a reality check for right now when I went to see the GP. I explained about the pressure I’d been getting from work and the total lack of understanding that was fuelling it. The GP said stress was no good for me and I had to put all that aside. She went on to say that whatever was going on was nothing compared to the cancer and that “you are fighting for your life”. Fighting for my life! That stopped me short. This is serious stuff. I think I might just have finally grasped that it’s a lot more serious than any job.

More info: Prostate Cancer UKhttp://prostatecanceruk.org

Macmillan information: Side effects of pelvic radiotherapy in men http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Radiotherapy/Sideeffects/Pelvicsideeffects_men.aspx

Macmillan booklet: Pelvic radiotherapy in men – managing side effects during treatment http://be.macmillan.org.uk/be/p-20578-pelvic-radiotherapy-in-men-managing-side-effects-during-treatment.aspx

Macmillan information: Managing the late effects of pelvic radiotherapy in men http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Radiotherapy/Long-termeffects/Lateeffectsofpelvicradiotherapyinmen/Pelvicradiotherapyinmen.aspx

Starship Voyager Photon Torpedoes: http://youtu.be/PIGxMENwq1k


Surviving prostate cancer would be great, but surviving and living would be better.

When do you become a cancer “survivor”? That was the question posed in an online forum where the contributors were discussing “survivorship” in the context of prostate cancer. There were differing opinions based, understandably, on the personal experiences of the men affected.

Personally, I’m not sure about the survivor bit. It’s not just that I don’t yet feel like one myself but it’s also that I wonder if I’ll ever be truly free of cancer, even if one day I am told it’s gone. It could be gone physically but would it also be gone from my head? I hope so, but I can’t yet see that being the case. Maybe you need to come to terms with cancer in order to get it out of your head? I haven’t yet done that.

I was determined that cancer wouldn’t end up being the be-all and end-all, that I wouldn’t let it take over, but I feel like it has. It has become all pervading, reaching out with its tentacles to entangle every aspect of my being. I know that sounds dramatic, but I bet I’m not the only one with cancer to feel that way. On occasions I’ve found myself severely affected by fatigue, by infections, by pain. There are hospital appointments, doctor’s appointments and all the rest. I’ve worked shifts my entire life yet I’ve never had to think so seriously and deeply about such run of the mill, everyday things as diet, exercise and sleep. My daily routine is totally different from this time a year ago. Added to that is an underlying fear that the cancer has spread or will spread, that every ache or twinge is a symptom. It’s irrational in lots of ways, but the fear is there.

I don’t know how other cancers affect sex and sexuality. I don’t even know if they do, but I suspect that the other male cancers must. I have found that the many effects of prostate cancer, and its treatments, go to the very core of being a man. Basically, I can no longer “get it up”. There’s some movement, a poor excuse for a “semi”, but certainly not enough for sex. The possibility of future radiotherapy holds the threat of what little movement remains also disappearing, This is all a big change from before and it has affected me more than I realised it would, in spite of reading up on it prior to surgery. It’s depressing. Any man not affected by erectile dysfunction is unlikely to have a true understanding of what it can mean. Sure, we’re all different, but we’re all sexual beings to one extent or another. We all need that physical release, don’t we?

What man wouldn’t be depressed about post cancer impotence? I miss the full erections. I miss the sex. I miss the wanking. I miss the sensation of “cumming”. Before my surgery I was told in a well-meaning way that I’d still be able to have soft, dry orgasms. I’ve yet to experience one that is anywhere near as satisfying as before. On a scale of 1 to 10, most pre-cancer orgasms were at least an 8 or more. The few I’ve had since surgery are about a 1, and a poor 1 at that. I really wasn’t prepared for this, and, on occasions feel very down. I try to overcome the despondency by just “getting on with it”, but just “getting on with it” is not a long term solution.

As good as they are in many things I’ve found the health services very lacking in the erectile dysfunction department. I’ve felt like I’m floundering. After asking, I’ve been referred to an E.D. Clinic. I think E.D. referrals should be an automatic part of the treatment plan for every man with prostate cancer. Where I live the local NHS has decreed that the help I could get elsewhere in the UK in the way of Vacuum Pumps and Medications should be either not available at all on the NHS or only available in small amounts. I have this vision of a room full of prudish, old maids, supplemented by a few disapproving nuns from the Order of The Sisters of Little Mercy (thanks to Steve Coogan in Philomena for that line), coming to the conclusion that a desire for sex in any man is bad enough but that desire coupled with a man aged over 50 is even worse and definitely not to be encouraged. If they knew I was gay, God only knows what they’d say. No fear of that, though, as they probably haven’t even considered such a thing. They have a one-size-fits-all approach (no pun intended) that takes little account of the differing needs of individual straight men, let alone those of gay men who have (or, rather, used to have) penetrative sex. So much for the Equality Act and the NHS’s duty to treat everyone fairly. Depriving everyone equally is not the same!

If I had to put the whole lot together, all the experiences associated with this cancer, all the possibilities, its potential, what it’s already done and how my life has changed I’d say I felt totally pissed off and dejected. Not all the time, but certainly a lot of the time. It’s life changing in every way. It gets right to the core of my being, for my reason for living up to when it hit. It’s changed all my plans, (our plans), for the future. I am now trying to adapt. My choice is to make the best of things and move on, not to give in and give up, but I could sure use some help, not least on the sex front. I can appreciate why depression sets in with some guys and I don’t blame them for it. I still prefer the option of surviving over the alternative, but surviving and living would be better.

No, not all men affected by prostate cancer are straight and no, my wife will not be picking me up after treatment.

I just read an entry from Nick Wright on the Prostate Cancer UK blog entitled “Life after prostate cancer – it’s about more than surviving”, which, for me, was very inspiring. I liked the piece. I even clicked on “Like”. I’d recommend anybody interested in prostate cancer read it. But, there’s always a “but”.

I have often been inspired and encouraged by things I’ve read and heard over the last two years since first having the word “cancer” mentioned to me by my GP. On almost every occasion that inspiration has soon dissipated when the realisation dawns that, once again, what’s being spoken or written about is done without any thought that people like me might be affected by this disease.

The assumption always made is that a man with prostate cancer (a) must have a partner and (b) that partner must be a wife. Why?

Nick Wright’s piece was no exception. For example “The wives of the men on the programme played a key part in its success. And it soon became clear that they were having a tough time too”.

Nick, if you are reading this, my male partner of 30 years is having a hard time. He’s supported me all the way and is having to cope with the big changes in our life himself. He would also benefit from the great support you mention (and it is great support by the sounds of it). Language can be very inclusive and positive. It can also be very exclusive and negative.

As advised in the last paragraph of Nick’s blog entry, I did contact Prostate Cancer UK a few months back to see if there were any plans to start some sort of a support group in the London region for gay and bisexual men affected by prostate cancer. The reply amounted to “there’s no demand”. Apparently, there is demand in Birmingham where Prostate Cancer UK were recently looking for a support worker for a group it was setting up there.

I’m no expert on demographics, but I reckon it’d be a fair bet to say the London region has a larger population of gay and bisexual men than Birmingham and that it would follow that there’d be a larger number of us likely to be affected by prostate cancer in London than in Birmingham. Of course, it’s possible the person at PCUK who responded to my enquiry didn’t have a clue and genuinely thought London doesn’t have a large gay population. A bit like the old days when it was believed you’d only find a “homosexual” if there was a theatre in the town. For info, London has lots of theatres.

Luckily not everyone at PCUK is so totally unaware and unworldly. The organisation has recently published some excellent information for people like me – http://prostatecanceruk.org/information/living-with-prostate-cancer/gay-and-bisexual-men , so there is hope.

It has also provided some help to at least one of the other two groups that have started in the UK in the last year, in addition to the one mentioned in Birmingham. A year ago there were no groups in this country for gay and bisexual men affected by prostate cancer, today there are three – the other two being in Manchester (Out With Prostate Cancer) and Greenwich in South-East London (Metro Walnut).

Our NHS still has a long way to go, too, when it comes to understanding that not all men with prostate cancer are straight. I’ve met some people in the NHS who have been instantly supportive when finding out I’m not straight. Unfortunately they’re still a minority. One Consultant genuinely wanted to know how prostate cancer was different (not worse) for a man who isn’t straight and was very interested when I explained. He is one of the people who is now attempting to start a support network in a region very near London for gay and bisexual men affected by all forms of cancer. At the other end of the spectrum I’ve had to repeatedly explain and repeat several times to the same people that “no, my wife will not be picking me up after treatment, my male partner will”. Assumptions being made are bad enough but when the same people insist on referring to my non existent wife it becomes very trying.

I didn’t used to bang the gay drum, well not as loudly anyway, but when you’re affected by something as major as cancer you tend to ask yourself why you’re still putting up with being ignored and excluded by organisations that are supposed to treat us all fairly and with dignity and respect. Having asked myself I decided I would no longer just out up with it. That’s one reason why I’ve written this.

Information on the three groups that currently exist in the UK for gay and bisexual men affected by prostate cancer can be found at the end of Prostate Cancer UK’s Prostate facts for gay and bisexual men.


March is Prostate Cancer Awareness Month ​ – To test or not to test ……..

Prostate cancer is the most common cancer in men in the UK. Despite this, most men only have a rough idea where their prostate is, what it does and what happens when something goes wrong with it.

I was no different, but I’ve spent the last 18 months reading up on prostate problems including cancer, how they affect quality of life, the available treatments and their associated side effects. I’m only just starting to understand the impact prostate cancer has on others – partners, family and friends. Only men have prostates but is it just a man’s disease if everyone can be affected by it?

Cancer is just one of the conditions that can stop your prostate from doing what it should. Others are an enlarged prostate or prostatitis (inflammation of the prostate). All of these conditions can be life changing in different ways.

If you have a problem with your prostate you might not have any symptoms at all but, if you do, they can include trouble starting to pee, a slow flow when you get started, urgency, frequency, peeing more during the night, erection problems and, very rarely, bloody semen. You might feel pain when sitting, or you might have pain or discomfort all the time.

I had never heard of a prostate cancer test and I didn’t know that I’d had one until two months after the event when a form for a second test arrived in the post. I was chucked right in the deep end. The initial test for prostate cancer measures the level of PSA (Prostate Specific Antigen) in your blood. This can give an indication of whether or not there is a problem, but it’s not a foolproof test! It can show high levels of PSA in your blood without you having prostate cancer. The flip side is that some men with prostate cancer have a normal PSA level. When I got the result of my first PSA test I never knew any of this and the GP telling me not to panic had the opposite effect. That was just the start.

Some countries have routine PSA screening programmes, mainly for men aged over 50. We don’t have this in the UK and one of the reasons is the unreliability of the PSA test. I suspect, though, that the main reason is cost with a reluctance on the part of politicians to spend the money required for the extra resources needed. We have screening programmes for other cancers but for prostate cancer we have a Risk Management Programme (see link).

Despite not having a national screening programme all men of any age can ask their GPs for the test. The advantage of men taking control over their own health is that we can all build up a personal record of our PSA levels, useful for all men but particularly for those who are at high risk of developing prostate cancer e.g. Afro-Caribbean men and those with a close relative who has prostate cancer. As we get older it’s normal for our PSA level to rise. Testing annually can let you see if the velocity of change increases suddenly. If it does, you and your GP can deal with it quickly. Before you test though, read up on it. Find out what factors can affect the result and how a diagnosis and subsequent treatments can affect quality of life. Don’t go into it blindly. Getting a PSA test is a personal decision that each individual has to make. Finding out what different results could mean can help you make an informed choice about whether or not to have it.

Although 1 in 8 men in the UK will get prostate cancer most men who test will be given an all clear. That still leaves 40,000 men who are diagnosed every year in the UK. Not all will need immediate treatment and some will live to a ripe old age never having been treated and die of something unrelated. It depends on what grade of prostate cancer you have, a pussycat or a tiger.

A PSA blood test is just one initial test that your GP would do. The other might be a Digital Rectal Examination (DRE) or “finger up the bum” to you and me. Not something to relish but it could help save your life. Many men don’t see their doctors until they have something happen and then find that it’s prostate cancer that has spread. You can still be treated, no matter how late the diagnosis, but you might not be cured.

As there are 250,000 men currently living with the disease in the UK there’s a good chance some of them will be reading this. As many will know, the testing, diagnosis and treatment for prostate cancer is not straightforward but the fact they’re living with it is a good reason to consider being tested – you live to tell the tale. Most of the men who aren’t living with it are the ones who didn’t see a doctor till their cancer had spread.

The politics behind Prostate Cancer

I’ve spoken to some men affected by prostate cancer who think the entire field is neglected. That’s my perception, too. I’ve heard it compared to breast cancer, the most common cancer amongst women in the UK (and the most common overall). The life changing effects of breast cancer, for example a mastectomy, are appreciated by women and men alike including by those who have not been affected, because it is talked about; it’s on the political agenda. One reason why the field of breast cancer is so different is that women have spoken up. They have not tolerated no screening, inadequate funding and being denied the things they need that can improve their lives after a breast cancer diagnosis.

Men, on the other hand, say very little. It is little wonder that no prostate cancer screening programme exists, that funding is inadequate and that the biopsy initially offered by the NHS (if needed) is not the most reliable that is available because the more reliable one costs more money.

The loss of a prostate, with its potential side effects including incontinence and impotence, are not spoken about openly. For most men, the side effects they are warned about before the start of treatment for prostate cancer are a shock, almost as much as the cancer itself. Where we’re given a choice of treatments it’s not because one treatment will be more successful than another, it’s so we can decide which set of side effects we find the most acceptable. An advantage of testing and finding out early on if you have prostate cancer is you are likely to have a bigger choice of treatments.

The men who are left incontinent or impotent after treatment for prostate cancer find that many of the things that can help relieve these devastating side effects are not routinely available on the NHS or, if they are, depend on where you live. Why? Maybe the politicians controlling the purse strings are relying on men not to kick up about what can be a very embarrassing subject for many. We should be kicking up. There are 250,000 of us with this disease and we have a lot to kick up about. Until we do, the most common cancer that affects us, and will affect another 40,000 next year, is likely to remain inadequately funded and an easy target for NHS cutbacks.

A good place to find out more is the Prostate Cancer UK website – http://www.prostatecanceruk.org

There’s also Cancer Research UK – http://www.cancerresearchuk.org
and Macmillan – www.macmillan.org.uk

Prostate Cancer Risk Management Programme

The Macmillan site’s Learn Zone has a 1 hour radio programme from the BBC entitled Prostate Cancer Journey, which takes away a lot of the mystery – http://learnzone.org.uk/courses/course.php?id=50

The above piece was written in January 2014 and an edited version was published in the February edition of “Locomotive Journal“, ASLEF’s in house magazine