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. 

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