Dr Chris Hiley Head of Policy and Research, The Prostate Cancer Charity
Richard Dawson Member of the Charity's User Advisory Group
Graham Newman Retired police officer
Professor Paul Forster: Now we are going to invite you to look at the results of the biggest ever survey that's ever taken place in the UK , of its time, the Real Man's Prostate Cancer Journey. Thank you very much. Enjoy the day.
Vivienne Parry: And can I introduce to present that Dr Chris Hiley , Richard Dawson and Graham Newman.
Dr Chris Hiley: Lovely, thank you very much and welcome everybody to London . A little bit damp on occasion but hopefully your journey here today wasn't too bad.
First point I want to make, there are 1,145 men with prostate cancer on this stage, oh and me! And you'll be pleased to know I'm not staying long, I'm not going to land up in that unusual position of speaking for men, because as we've discovered through our very large survey, men are perfectly capable of speaking for themselves.
This opening session is all about the real man's prostate cancer journey. Graham Newman and Richard Dawson, two real men of the obvious ones, but there are another 1,143 men who are also here. They are men who filled in our First National Survey. First we'll be hearing from Graham Newman with an account of his prostate cancer journey since he was diagnosed. Graham will pass the baton to Richard. The racing analogy is particularly appropriate as we're going to cover an awful lot of ground at really quite a gallop, so there won't be much time, if any at all, for questions, but all three of us will be around for most of the day, if not all of the day, so if anybody has questions do grab us at some point, I'm sure we'll be able to help you.
Richard is going to talk about his prostate cancer journey but at the same time will also introduce some of the key results from our actual First National Survey which is being released today. What we actually did was send 2,300 men a copy f the world's largest questionnaire. It makes no sense to make a questionnaire so big but I was convinced that men would be committed to answering the questions and boy was I proved right. I know this because I had to cope with all the data when it came winging back to me through the post. The results highlight serious gaps in the care of men, some men left to cope almost on their own, whilst others were fully supported by an excellent NHS team.
Naturally we're going to be concentrating on the men who had a less good experience because those are the men who have a problem that we believe we can help them to fix. We asked them about how they were treated, how sensitively they were told the news and believe it or not, we even found some men who were told of their diagnosis of prostate cancer by letter or over the phone. It wasn't actually something we were expecting to find so I can't give you firm statistics on how often that was happening but I do find that quite strange.
Some men, as I say, clearly had good care. Inevitably we want to fix things for the 25% of men who consistently had specific and major complaints. The full report containing all the data that Richard will be presenting plus a lot more besides, will be available or is currently available on the exhibition table in the prostate cancer exhibition, which is out of the door to the right. You can also pick up a copy of the questionnaire. It's a blank copy - please do not feel inclined to fill it in because we've already produced the results and you'll be disappointed to get no response from it, but I thought you may be interested to see the range and type of questions that were answered and we are going to analyse further data as we go forward.
So the First National Survey - I must pay particular compliment and thank very much the help that I received from Dr Emma Ream at Kings College in London , because she helped so much with the designing of the questionnaire. Everyone thinks questionnaires are easy - I know they are difficult - they are terribly easy to get wrong - so it was a great help to me to have her help.
So there we are. I shall now and over to Graham who's going to tell you his particular story about his particular experience of prostate cancer care. Thank you very much.
Graham Newman: Good afternoon ladies and gentlemen, sorry good morning. That was last week. Forgive me if I read this, I've got a shocking memory. I'm quite honoured to be invited here today to tell you about my experiences as a prostate cancer sufferer and I want to start by taking you back to the Victorian era. A period during which artists added ornate embellishments to anything and everything including the humble lavatory, or if you prefer the toilet, loo, WC, netty or dunny, if you happen to be Australian. There exist in many museums and antiques shops around the country elaborately decorated baths, wash basins and lavatories, which are works of art in their own right despite being relegated to the smallest room in the house.
Victorian artists also had a somewhat warped sense of humour which was demonstrated when one such artist decorated a men's urinal by adding a drawing of a fly beneath the glaze, strategically positioned facing the user. So what's the relevance of this piece of history? Well the reason the artist placed the fly in this position is due to that well known fact among the modern male population that boys like something to aim at when emptying their bladder. Hence the appropriately positioned fly, a perfect target. Don't ask, it's a man thing!
And so it was on a day in 1997 that I found myself in the loo about to empty my bladder when something caught my eye that reminded me of a childhood memory. It was a hapless kamikaze fly which had flown into the previously referred to target zone, which was of course the toilet bowl. As I regressed into my boyhood childishness I donned my imaginary spitfire pilot's helmet and goggles and prepared to shoot the intruder down in customary fashion. I then discovered I couldn't, there wasn't any ammunition. My flow was so weak that I was barely able to reach the toilet let alone hit a fly. And it was this experience that prompted me to pay a visit to my GP about my suspicions regarding what is often referred to as “Old Man's syndrome” or more correctly the swollen prostate. During the appointment the GP informed me he was going to perform a digital rectal examination, known as a DRE.
Being a bit of a gadgets buff I thought this must be some sort of an electronic device. I soon discovered that it was the dreaded latex glove, bend over and think of England type of examination. As I wasn't expecting this my mind searched for some reference point for this type of examination. But the only scenario that came to mind was that well known Victor Meldew sketch from the television show “One Foot in the Grave” in which Victor when returning from a holiday abroad, was asked by a customs official if he'd had a comfortable journey? His casual reply whilst referring to a medical condition of “it would have been comfortable if it wasn't for this crack up my backside” elicited an immediate response from the customs official, which involved the use of a latex glove. It left Victor with a horrified look on his face which must have been mirrored on mine at that moment.
On this occasion no abnormalities were discovered and a prostate specific antigen test known as the PSA test revealed a level of 1.9 which in the GPs opinion did not warrant any further treatment or tests, as my condition was said to be normal for a man of my age which at that time was 47. Almost 6 years later, during the course of 2003 my symptoms gradually deteriorated, causing me to visit the toilet every hour or so during the day and particularly through the night. I became quite irritable due to the loss of sleep this caused so in October 2003 I consulted a different GP who carried out further PSA and DRE tests. The PSA result came back at 10.5 which was considerably higher than my earlier result of 1.9. However the DRE suggested to him that my symptoms were probably benign. But in view of the raised PSA level he suggested that further tests should be carried out and to his credit and the detriment of the his appointment system - he discussed and explained in full the pros and cons of such tests, and the risk that they posed in themselves.
This was the first time that the subject of cancer was raised. As I was only 53 years old the decision was a no-brainer – I was having those tests - as I just couldn't face the uncertainty of not knowing. Not long after I was called to my local hospital to begin those tests and was subjected to a further DRE. I was beginning to develop a phobia about latex gloves but this paled into insignificance when I discovered what was to follow - a transrectal utrasound scan, known by the acronym TRUS. This involved the use of a scanner which looked like Darth Vader's light sabre and was to be inserted in a similar fashion to the dreaded DRE. They began the scans which were followed by attaching a cutting type device to the end of the scanner to enable them to take biopsies from the suspect sites. They took ten biopsies which left me tender and sore.
A few weeks later on New Year's Eve I was contacted by a hospital secretary to ask me to attend an appointment with my consultant a few days later on the 2 nd January 2004. At the appointed hour I spoke with the specialist who explained the presence of cancer in my prostate gland and explained that further tests would be necessary to assess the size and spread, which would determine the treatment options.
So there it was, the big C. That unspeakable deadly disease that happens to other people, but here it was happening to me. I was shocked and frightened. My family as well as myself were devastated and stunned by the news. During the following week I had MRI and bone scans. The bone scan was negative which was blessed relief but that MRI scanner was a worry. I took staff up on the offer of bringing in my own music CD to listen to during the procedure but thank heaven I took a loud pop CD instead of a quiet classical piece I'd intended. The noise these scanners make is horrendous - its unnerving and quite unexpected. I could hardly hear myself think, let alone listen to music, and I felt quite apprehensive. After these tests I was directed to another hospital where it was the consultant urologist who was to tell me the results of the scans and the available treatments. But he didn't. What he did tell me was that he and his colleagues would have to take extra time to study the results more carefully and decide if I was a suitable candidate for a radical prostatectomy or not, the difference between a possible cure or not.
My next appointment 2 weeks later in the February sealed my fate. It was Friday the 13 th , not that I am superstitious (touch wood). When I attended the appointment the consultant confirmed that the cancer was locally advanced and that meant that the radical prostatectomy was not an option, it was inoperable. The cancer had spread to the seminal vesical and the lymph glands had swollen to a size in excess of that normally considered suitable to proceed. Despite the knowledge that I had of cancer, I'd still hoped for an operation to remove it together with the prostate gland and be OK. But I was shocked to hear that it had spread and was inoperable. This was serious and the only thought that came into my head was “how long?” So I asked the consultant and he gave me a best and worst case scenario of between 7 and 20 years, which has dwindled to between 5 and 18 now - but hey who's counting?
We discussed hormone treatment and radiotherapy as a means of shrinking the tumour to ease the symptoms and hold back the cancer, but no other options were suggested or discussed. Before leaving, I commenced a course of hormone therapy by means of three monthly injections of the slow release implants of goserelin or what is known in the trade as Zoladex. By the end of April, the treatment was having some beneficial affects. My PSA level had dropped from 10.5 down to 0.3 which was a huge relief. By now my symptoms, exacerbated by the scans and biopsies, caused me to need to visit the loo as frequently as every 20-30 minutes which curtailed my daily routines. The cold weather just added to my misery.
It was during this time in April that I needed something to occupy my mind whilst I remained a virtual prisoner in my own home. I was being inundated by enquiries from our many relatives and friends which were well meant but a little tedious due to the repetition, I was suddenly struck by an idea that would both fill my time and keep my friends and family up to date with my condition and treatment - a website on the internet. I researched the subject and later that month I published my online diary about the symptoms, diagnosis, treatment and side effects of prostate cancer. It didn't stop people from repeatedly asking me about my health, but it did fill my time and stop me from becoming despondent.
The website led on to bigger things such as my presentation to a group of cancer specialists in London, my being presented with an award for the website at the ceremony held here in London just last week, and of course being here to talk to you today. I do all I can to increase awareness of this disease and the website is an ideal medium for this ambition.
In May 2004 I had an appointment with a radiologist who discussed the possibility of me being involved in some clinical trails to test the relative merits of hormone therapy over radiotherapy, or combinations of both which involved the use of placebos. With a Gleason score of 8 and a morbid fear of death, I opted to receive both the hormone and the radiotherapy - to hell with the placebos! During the month of June I started a 20 day course in radiotherapy and by July it had caused inflammation of my prostate, knocking back to square one any improvements I had made with regards to visits to the loo. I was really fed up when things got so bad that I had to stop somewhere on route home from a hospital treatment, to visit the toilet as I couldn't wait until I had completed the journey and it was only a 7 mile drive.
It was frustrating and depressing so I swallowed my pride and asked the nursing staff about being fitted with a catheter, not something one considers in the normal course of events but these were not normal events. The ward sister I spoke to showed me device that was shaped like a condom and held in place by a strong adhesive gum. I remember the relief I felt on the journey home that day as I was sitting in a queue of traffic at a red light, relieving myself with a contended smile on my face and looking at the quizzical glance from the chap in the car alongside me. Lord knows what he thought I was doing.
As I was now able to leave the house without regards to where I could access a loo, I decided to resume my daily walks in a local country park. It was wonderful - the birds were singing, the sun was shining and I felt the weight of recent events lift from my shoulders. Four weeks after my last radiotherapy session I returned to the department to speak to the doctor to discuss the pros and cons of my treatment. I think I was expecting to be told something positive about the results of the therapy, but our discussions centred on how I felt I had improved compared to how I was pre-radiotherapy, rather a subjective test rather than an objective one. Whilst attending the hospital for radiotherapy everyday for four weeks - by the way we got weekends off for good behaviour - a certain camaraderie built up with other patients receiving treatment, and I felt that something positive was happening to control this disease. But at the conclusion of the treatment there was nothing just a void, a feeling of, “what now?” And not knowing what came next and to be honest I still feel a bit like this.
So there we have it, my PSA is at a lovely 0.1 and I'm having my hormone implants every three months, so apart from tiredness, fatigue and night sweats, there's nothing new on the horizon medically speaking. Well actually I do have one or two personal reservations which may be experienced by others around the country. My initial and perhaps greatest disappointment involved my first visit to a GP in 1997. With the benefit of hindsight I believe as I was displaying early signs of prostate problems it would have been prudent to ensure that I had an annual PSA and DRE to monitor my situation. But as I was lulled into a false sense of security by believing that it just was old man's syndrome, ie a swollen prostate, it just didn't occur to me and this caused me to delay my next visit to a GP when my symptoms worsened.
My second point relates to my visit to the hospital in February 2004, where my consultant informed me that I had inoperable prostate cancer and we discussed treatment options. Well actually I wasn't given any options, it was more a case of Hobson's choice, hormone therapy, the possibility of a one of course of radiotherapy and a watching brief there after was all that was on offer. I later discovered information relating to alternative treatments which were not always available on the NHS such as cryosurgery and HIFU, which are more commonly available privately. I feel my consultant should have advised me about these alternatives, even if it was only to explain why they might not be available or suitable in my case. Discussing them would have increased my confidence that these options had been considered, and that all that could be done was being done.
My next personal observation relates to the radiotherapy sessions I attended. I experienced a lack of relevant information at the start of my treatment. I was provided with literature, and given the opportunity to speak to a nurse about any areas of concern, the subject not touched upon, which is quite a common one, and the area that I and others were lease likely to discuss due to embarrassment and the lack of knowledge and experience, is the possibility of the need to be fitted with a catheter, when the treatment inevitably inflames the bladder, causing feelings of urgency and increasing frequency of visits to the lavatory. This had a huge impact on my lifestyle and that of others I have spoken to. I became a prisoner in my own home, and became mildly depressed as a result, and all for the want of information about catheters.
In conclusion, there seems to be a lack of a nationally accepted code of practice for dealing with prostate cancer and its sufferers. Each authority devises its own plan of action which includes some good practices and yet they all seem to fall short in one area or another. A national agreement could be gradually improved upon as the various authorities discover something of benefit to the overall plan, thus helping all authorities to implement these new practices or procedures quickly, efficiently and in a cost effective manner for the benefit of all. I am pleased that my own health authority is one of the best, but there is no room for complacency. Thank you all very much for listening to me.
I'd like to hand you over now to my good friend Mr Dawson, who is now going to continue and show you some of the statistics involved.
Richard Dawson: Hello everybody and thank you Graham for that introduction. I found your story really interesting. Mine, of course, is a bit different. I was diagnosed with prostate cancer in 1997 at the age of 53, and it was complicated by the fact that in 1979 I had already suffered from testicular cancer and that was dealt with, with surgery and inverted Y radiation. And because of that the options of treatment for the prostate cancer were very limited and I was in a quandary about what was going to happen. But I was lead by the hand in my journey that we are going to talk about in a minute, very well by the Marsden Hospital because I was under them for the testicular cancer problem, and I had just become a yearly visitor up there. And the way that the prostate cancer was discovered was that I heard a radio programme where the late Sir Julian Critchley was speaking, whose own father had had prostate cancer and he himself had got prostate cancer, and said that he would advise any man over the age of 45 whose father had prostate cancer to have a check.
Well my father died of prostate cancer back in 1969 and we knew about this, but there were other complications as well, emphazema and other things, and it never really hit my mind that this could possibly be happening to me. So my next visit to the Marsden Hospital on my annual visit, just a check up, I mentioned it to the doctor, and they did some examinations and took a PSA test. The PSA was 6 and it went up. Within a week to 6.5 so I was referred to the urologist who did a biopsy and discovered that I had a prostate cancer with a Gleason factor of about 7. So we had to do something about it, and brachytherapy in this country was in its infancy then, so they sent me up to Leeds to Dr Ash, and I had brachytherapy up there which appears to have been successful. That was in 1997 and my current PSA is 0.004, so that's the situation.
This survey that we did, (can I have the first slide up, please?), this survey that we did, first of all it says for men, that you need “a map”, “some people to ask for directions” and a “choice of routes”. I myself was very lucky I was within the system so, you might say, the Marsden led me by the hand. I have no complaints whatsoever obviously I was very well treated, but this isn't the case for most men, as the survey has found out. Everyone needs journey, this is a way of talking about the steps you are going to take, from the diagnosis and out the other side for the treatment and the cure, and the further treatment if necessary. Everyone's journey is individual and different but there are always bits in common.
What some men said about the information on their map, “information is very important in a cancer journey. It's the map that shows you where you are and where you've got to get to”
Let's look at some of this information. This is a typical comment from one particular person……
“Lots of information at diagnosis - the consultant should outline all options and the long term prognosis. I felt lost and alone and thought I was going to die soon. A list of questions at that stage would have helped me. ”
As you can see there he states clearly that he felt lost, and this is a very common thing I think with everybody that is told they have cancer. You feel very alone, you feel lost and there doesn't seem to be any prescribed way, as Graham was saying earlier, a common system of approach. So some form of helpful questions, or a list of questions would be very helpful. In my own case when I was told I had prostate cancer, the consultant did a very wise thing. He said, well obviously you are very shocked about this. I said well, you know, what do we do? The radiologist was standing there saying we can't give you radiation, and the surgeon said go away and think about it and when you see me next week, while you're at home, you'll have thought about the things you want to ask me, write them down on a piece of paper and then I can answer them, because that initial impact, you're shocked and you don't know quite how to take it all in.
Some further statistics and I think the bottom statistic, “20% of men, were not satisfied with the information they were given. ” That's 1/5 of the survey. 1/5 of 1143 men weren't satisfied, which I find unbelievable. As I said, I was spoilt in a sense that I had a very good journey.
“21% of men had no understanding of the PSA test when they had their first one”. They weren't told. “40% of men had not enough or no information about the PSA test when it was first carried out”. A quote from this survey
“I don't remember my first PSA test. PSA tests are important, all tests are important and any time a health professional advances on you with a needle it makes sense to ask exactly why” and “for a blood test” isn't a full enough answer” ie. we're going to give you a blood test etc.
“43% of men didn't receive written information about prostate cancer”. Again the hospital that I went to, and with many other centres of excellence, there is a lot of written information about prostate cancer that you are given at the time, but I find it incredible that 43% of men didn't receive any written information about it.
“38% of men didn't get the chance to speak to a specialist nurse” - this is something that the Charity is very concerned with. 38% of men didn't get a specialist nurse. Women with breast cancer, the equivalent disease if you like, all have the opportunity to speak to a specialist nurse. We've got a long way to go. But The Prostate Cancer Charity is running its own programme to get more specialist nurses onto the actual site so that the first person you speak to besides the consultant is a specialist nurse in that field. And it's an essential thing we need to have done.
“38% were not given the number of a charity or helpline”. Again, that's a very simple thing for the hospital to organise.
“34% were not given a contact telephone number at the hospital to use if they had concerns”. We're talking about 1/3 of the population. I know lots of men and their partners and families have had help from outside the health service. It complements and it shares, it's not a substitute or a threat, and there is some work that the Charity and others alike, have to do to make sure patients are introduced to their services. So there's something we can do at the actual point of contact.
Communication - what some men said about their chance to ask. It's a two way thing. It's not just the consultant just telling you this is what you've got and this is how we're going to do it. The person who's involved, the actual patient, should be listened to and his questions, and given the opportunity to actually formulate his questions.
This is a typical bad comment, admittedly there are good ones, but: “I found the urologist a trifle abrupt when being told verbally of the cancer. He was obviously short of time, but a more understanding attitude would have been appropriate. I have never been offered any other than 6 monthly visits to the urologist. ” When I first saw this in view of my own very good treatment, I was quite appalled that somebody could be treated in such a laissez faire way is appalling.
I am sorry if I am burdening you with lots of statistics but that's how it is.
26% of men felt that the hospital specialist had not allowed them to decide which treatment they thought was best.
25% felt that the hospital specialist had not involved them in the decisions
And this final point. 20%, 1/5 of men, felt the specialist had not asked their opinion about the different treatments available. Again I found this personally quite alarming. It means that 1 in 4 men were not involved in the decision-making process. From my own experience of the many scores of men that I have spoken to by phone, who have phoned for advice, via the Charity's Networkers - the range of advice throughout the country from different specialists is quite alarming. Certain specialists even discount brachytherapy, some want surgery, some want radiotherapy, there doesn't seem to be any standard procedure.
15% of men felt it was not easy to discuss their condition with their hospital specialist.
14% of men were not happy with the way decisions were made during consultations. Again this gets down to communication.
What men said about making treatment decisions: again, choosing a route. You can put a group of men in a pub, for example; and you can ask them the way to particular place and some will tell you the most direct route and others will tell you the most scenic route, and some will even tell you to go to the next pub, and the next pub, and the next pub!… But there is always a different approach and we all have our own ways of dealing with that particular journey and choosing that particular route. But very often, as we've seen in the statistics previously, that the patient who is the one most involved doesn't get the opportunity.
Again another comment from the survey, a bad comment: Conflicting opinions from different medical people. We have got the statistics, Chris, haven't we on these sorts of comments? But for a person to be told two different stories, as he says “it was hard enough making a decision without doctors giving contradictory advice”.
“Again one can not make plans, if one doesn't know the timing of the progression of the disease”. In fairness, that must be a very difficult thing to quantify.
“There should be clearer recommendations as to treatments. Patient choice is frightening, I personally dithered for several weeks”. Again, I can't comment on that as I was led by the hand but there should be more of that.
Quite an alarming statistic, the bottom line particularly. “15% of men felt that they had not made informed choices. ” I think this is one of the most unusual statistics that was unearthed in this survey. How do men feel on their journey? Their emotional needs? And I find it quite alarming, and I am sure we all do here, that 1/5, over 1/5 of the men interviewed who made this survey out, said they hadn't got any emotional needs, the stiff upper lip or whatever. I think there needs to be a lot more, as was said earlier by everybody, a lot more talk about coming out in the open about prostate cancer and discussing it.
I think this is very interesting to you Chris, isn't it, this slide? Yes. 1 in 10 stating clearly that their emotional needs weren't met. So again there is a lot of work to be done.
Thank you very much for listening to me and I'll hand over to Chris.
Dr Chris Hiley: A fuller and a proper written report you can find on the research table in the exhibition. So its out through these doors and to the right, and you'll discover the exhibition through the day anyway. It's really, really good and I do advise you to go.
Take home messages from this session:
Some men obviously do ok, because you'll notice it was 25% of men doing this and 20% of men doing that, it obviously means that 75% were probably quite happy and 80% in other cases. However I think the 1 in 4 statistics means a significant minority of men don't do so well on their prostate cancer journey, they are losing out on advice and treatment choices, and wanting to know about their side effects, they are losing out on access to specialist nurses, losing out on written information on the disease at the right time. If you don't get it at diagnosis you might get it a little while later, but diagnosis would be a good time to get it. And if it's suspected that you might have prostate cancer, you might even want some information before you get the diagnosis.
We will be re-running the survey in three years time, in order to see if anything changes, anything improves, because boy, there's a lot of improvement that needs to be done and we need to keep track of it all.
In the meantime The Prostate Cancer Charity and its other related colleagues in the charity world will continue to look for ways of getting our information out to these men. We will also continue to look for ways for getting these men access to all kinds of information. Support groups for example. That's clearly important, something else that's not happening well with men when they are in contact with the hospitals - the hospitals aren't passing on information that they need to know. We need to work with all the teams who look after these men, to improve their experiences of cancer care in the UK in the 21 st century, that's where we are.
It isn't rocket science to get the help to these men, but sometimes it seems easier to get a man on the moon than it would be to get the support and the information and all the services that they need throughout their prostate cancer journey. There is a sizable proportion of men out there as covered in our survey which says these men are uninformed, unaware, with unacknowledged needs and are experiencing far too much uncertainty.
Using the rocket science analogy, men aren't actually asking for the moon what they want and need is very simple. In terms of your prostate cancer journey: you want a map, you want some sense of directions and you want to choose your route, so that's an idea of where you are going, some advice along the way and some help on make the choices of the best route.
Ladies and gentlemen thank you very much for your attention.