THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
I am 59 years old, married with 2 children and live in the south of England. Back in 2005 I happened to read a magazine story about Prostate Cancer and recognising some of the symptoms (specifically those to do with urinary flow not being what it was) I decided to visit my GP. He consequently carried out a DRE and arranged for me to have a PSA test. Nothing untoward emerged from this and I was later informed that my PSA reading at the time had been 1.9, exactly the same as it was when I had a full medical check-up in 1999. Vaguely reassured, I saw no reason to take further action and let it go.
By September of 2007 my original symptoms had deteriorated to the point that I was regularly getting up at least 2 times a night to take a pee. So I went back to my doctor and demanded another PSA test. A couple of days later he telephoned me at home to say that the reading had come in at 5.4 - probably nothing to worry about, but to be on the safe side I should have a biopsy at my local hospital. I was surprised to be given an appointment for this within a week. The process took about 20 minutes and was no more than slightly uncomfortable, though it was a little disconcerting to notice a trickle of blood on my thigh as I rose from the treatment couch. Nor was I fully prepared for the amount of blood which was later to emerge in my urine and semen.
NOVEMBER 6th 2007
About 3 weeks after the biopsy (rather a long time to be sweating on the possibility that I might have Prostate Cancer) I attended an appointment with my consultant urologist who informed me that they had indeed found evidence of early stage cancer in one of the 14 core samples they took. I had to press him quite hard for the relevant details but was eventually told that the core depth would have been 10-14mm and the focal area was 1.1mm, so I guess that equates to roughly 10% involvement. However, since Prostate Cancer was multi-focal he said there was a good chance that other areas of the gland may also be affected. Whilst making it very clear to me that the final decision was mine alone, the consultant gave the impression he would have been quite happy to schedule me, sooner rather than later, for RP surgery - which I remember him describing as the "gold standard" treatment for PCa. I told him I'd think about it.
Later that afternoon when I informed my wife I had cancer, at first she didn't believe me but gradually realised I was being serious. I assured her that whilst I would probably not be dropping dead in the near future I might soon have to have an operation that could have some very unpleasant, and probably very permanent, side effects. The next few days were quite difficult as the reality of my situation started to sink in, but even before the diagnosis I'd started the process of researching the disease on the Internet as I've always believed that the more you know the better placed you are to make the right decision.
My first ray of hope came when I stumbled across the website for a private clinic specialising in laparoscopic keyhole surgery. Looking through the testimonials provided by their numerous happy customers, suddenly the prospect of Impotence and Incontinence didn't seem quite so inevitable. Unfortunately I had discontinued my medical insurance a few years earlier, and soon discovered that the operation would have cost me around £12,000 plus aftercare. Of course, I know now that the advertisement, was, like most advertisements of its type, somewhat misleading, but at the time it was exactly what I needed to drag me out of my depressed state.
My second trip to the hospital had been for a routine MRI scan which, according to my consultant, hadn't revealed any unexpected complications. He also gave me the result of a follow-up PSA test (taken less than 6 weeks after the biopsy). Unsurprisingly, it had risen to 9.7. I told him that I still hadn't come to any firm conclusions about what kind of treatment regime I wanted to pursue but would give it some thought over the next few months.
By the end of November I was already becoming less enthusiastic about keyhole, or any other form of surgery, and starting to concentrate instead on HIFU, in particular a clinical trial that was being conducted in London whereby rather than zap the entire Prostate they just treat the affected area. This seemed less invasive that the other options I'd been looking at and therefore (in theory) carried a lower risk of the side effects we all dread.
In the meantime I had decided to join my local PCa Support Group and attended their Christmas lunch in mid-December. I remembered the consultant commenting that, at 57, he considered me very young to be diagnosed with Prostate Cancer and walking into that Hotel Banqueting suite I could immediately see what he meant. Nearly all of the men there would have been a good 10-20 years older than me. They were a friendly enough bunch, but although we nominally shared the same disease we had little else in common. They were much further down the road than I, and had already had Radiation Treatment or were on Hormone Therapy. A couple of the men I spoke to seemed quite angry that, despite displaying all the classic symptoms, it had taken so long for their GP's to refer them to a specialist - by which time their PSA readings were up in the hundreds or even thousands. One thing I learnt from my three visits to the PCa Support Group was that even men with advanced Prostate Cancer are able to live happy and productive lives - often for a good few years.
I can't recall exactly when or how I came across the YANANOW website but I am in no doubt that it has been the single most useful resource I have found, not just in terms of researching the various treatment options available but more importantly in being able to read literally hundreds of real-life case histories, written not by a highly paid surgeon hoping to drum up some extra business, but by men who want to communicate and share their personal experiences of Prostate Cancer. I've no idea how many of these stories I've read over the past couple of years (suffice to say - a lot!) and can only express my gratitude and admiration to everyone who has taken the trouble to contribute. It really does make a difference.
At this stage I was still expecting to undertake some form of PCa treatment within the first 6 months of the New Year but wanted to hear as many opinions as I could before making a decision. So in quick succession I attended a series of appointments with: Private HIFU man, Laparoscopic Keyhole man, and finally HIFU Clinical Trials man. They all agreed that I had very early stage Prostate Cancer (T1c Gleason 3 + 3), and, like the consultant urologist at my local hospital, expressed their willingness to treat me. The distinguished consultants all seemed to know each other, either personally or by reputation, and each spent time trying to convince me why their approach was the correct one. Sometime in February I received the result of my third PSA test and was pleased to see that it had dropped to 6.6.
In the end I decided that the best option for me to pursue would be the HIFU Clinical trial. Prior to the HIFU treatment itself I would have to have another MRI scan followed by a Template Mapping Biopsy - both apparently using state-of-the art equipment. My MRI scan took place on March 10th and when chasing up the results a couple of weeks later was told by email that: "essentially the MRI looks fine - there were a few areas that looked slightly suspicious for cancer, but nothing overt". So much for state-of-the-art technology! But at least it wasn't bad news.
My next appointment was in June when I attended a pre-assessment clinic to make sure I was fit enough to withstand the general anaesthetic required for my forthcoming Template Mapping Biopsy. This seemed to go smoothly enough and I was given yet another PSA blood test, which came in at 4.89 - slightly below the original reading that had prompted the phone call from my GP 6 months previously. Even so, I wasn't entirely comfortable with the idea of repeated biopsies (a follow-up biopsy would have been required after the HIFU treatment to verify that any cancerous areas had been eradicated, and this would have made 3 in the space of less than 18 months). I remembered reading something - probably on YANANOW - suggesting that: if a cancerous Prostate were to be repeatedly punctured by needles, isn't there a danger that some of the cells might escape and cause the situation to become a whole lot worse? I'm no urologist but to my simple way of thinking this didn't seem by any means implausible. A series of email exchanges with my Support Nurse did little to address the questions I'd posed, but I did manage to speak to a man who had already participated in the partial HIFU Clinical Trial and he seemed very pleased with the results. Having said that his cancer had been at a more advanced stage than mine so perhaps he had less of a decision to make than I felt I did.
The main difference between the Template Mapping Biopsy procedure and the normal spring-loaded affair is that rather than taking 12 or 14 core samples via the colon they take about 80 via the perineum - or at least in my case they did. This is quite a big deal and explains why a general anaesthetic has to be used. Even so you are given the impression that patients whose operations are scheduled during the morning are normally able to go home later the same day. My own procedure was carried out at around lunchtime and I remember waking up in the recovery room feeling a little groggy but not too bad considering. I even managed to stagger the few yards to the WC to see if my waterworks still worked. Luckily they did, though I later found out that the man in the next bed to me wasn't so fortunate and had to be catheterised.
It was probably not much later than 2pm when I got back to my ward, where I was given a sandwich (devoured ravenously) and a large jug of water. The hospital won't agree to discharge you until they're satisfied that the amount of blood in your urine is at an acceptably low level and within an hour or two it had become pretty obvious that I wouldn't be going anywhere till the following day. To be perfectly honest I didn't want to. A large bandage had been taped to my crotch to protect the 80 little puncture marks and I was warned not to risk bathing the area for at least a week. My night in hospital was long, sleepless and punctuated by numerous trips to the WC to expel the endless cups of water I had been told to drink. The next morning a nurse changed my bandage and eventually the doctor was happy enough with the colour of my urine sample to allow me to call my wife.
She arrived sometime in the middle of the afternoon and although it was a Sunday there was quite a lot of traffic around and when we eventually got back home I just about made it to the bathroom in time. Of course one of the symptoms of having an enlarged (and at this stage probably quite swollen) prostate is that it is often necessary to take a pee two or three times an hour, especially if, like me, you are told that you must drink several litres of water per day. Not only that but a paltry 300ml of urine can make you feel as if your bladder's about to explode.
The first two or three days of my recovery period didn't seem too bad. The previous biopsy had given me some idea of what to expect in terms of bloody residue, but I never felt the need to use the painkillers that I'd been given. Probably the thing that had shocked me most was the amount of external bruising, which by now had spread to my thighs and buttocks. By the end of the first week I had expected to be over the hump, but if anything, felt slightly worse than when I'd first got back from the hospital. The main problem was lack of sleep. I found that rather than once or twice I was getting up three or four times a night and rather than spending a minute or two in the bathroom it was more like ten or fifteen minutes struggling to create enough pressure to move a few stubborn millilitres of pinkish fluid the short distance from bladder to toilet bowl. And it stung - by no means "fish-hook / razor blade" agonising, but not very pleasant either - at one point I took myself along to the hospital A&E department to be checked out for a urinary infection, and they sent me home with a fresh supply of antibiotics. Eventually (I'd say about 2-3 weeks later, during which time I'd been faithfully practising my Kegel pelvic floor exercises on a daily basis), the bruising subsided, the stream became clearer and the flow became stronger - not great, but probably much the same as it had been pre-Template Mapping Biopsy. The next thing I wanted to know was what new evidence had been gleaned from my 80 slivers of Prostate gland?
Although the operation itself had been carried out in late July I didn't get to see my Clinical Trials consultant for a follow up appointment until September 24th, however I did receive a phone call from the Support Nurse to say that only one of the core samples had been found to contain a small amount of cancer. This was fantastic news. If anything I was expecting them to have discovered at least one more affected area or perhaps to have decided, upon reflection, to award me a higher Gleason grade.
Throughout the year I had been continuing to read more and more YANANOW case histories and by now was starting to lean towards the idea of Watchful Waiting / Active Surveillance. All the available evidence pointed to the fact that I was probably in the very early stages of what might well be a non-aggressive, slow-growing cancer that might take another 20 years or more before it became life threatening. I deliberately say "probably" and "might" because we still know far too little about the disease to take anything for granted.
So, approximately 12 months after my visit to the GP, I sat down in the consultant's office to discuss my options. He said that if I still wanted to participate in the HIFU Clinical Trial I was very welcome to do so, but when I told him my preference was for active surveillance he fully supported my decision. To quote from his letter to my GP: "The histology taken on 29th July 2008 amounted to 81 prostate cores arising from 20 sites. There was no more than a tiny atypical focus of cancer amounting to less than 1mm of disease. This is probably the lowest amount of disease that we attribute". We agreed that I should have PSA tests every 6 months and meet up again in March 2009.
As it turned out, the appointment in March was focused more on the problems caused by my enlarged Prostate than the cancer itself. The original TRUS biopsy (or maybe it was the MRI?) at my local hospital had calculated my Prostate volume at 35ml (25ml apparently being considered the norm) but the state-of-the-art equipment available in London seemed to indicate it was more like 60ml - quite a difference. The way I looked at it, my Prostate was certainly not going to get any smaller - indeed it would surely continue to grow - unless I took some kind of preventative action.
Right at the outset I'd been told by my GP that my raised PSA level was more likely to have been caused by BPH (Benign Prostate Hyperplasia) than cancer, so I was already familiar with surgical procedures such as TURP (Trans Urethral Resection of the Prostate) / Greenlight laser, and drugs such as Flomax and Finasteride. In fact I'd already tried a brief course of Flomax without seeing any noticeable benefit. The consultant was willing to put me on a 6 month regime of Finasteride, which may well have reduced the size of my Prostate, but already suffering from ED to a certain extent, I didn't want to risk the side-effects making matters worse. He also mentioned that the HIFU treatment could have the dual benefit of getting rid of the small (known) area of cancer and at the same time reduce the size of the Prostate but I decided that for the time being I would live with the discomfort. Finally he gave me the result of my 6-month PSA reading, which had come down yet again to 4.3. Since I had decided against having treatment at this point, we agreed that I should be transferred back to the consultant at my local hospital.
I went to see him on October 21st to find out the result of my latest PSA blood test - which was slightly raised at 4.6. He expressed the opinion that I should now be arranging for another biopsy - which I told him I didn't want to do just yet. Nor did I wish to sample the delights of TURP or Finasteride. He seemed a bit put out by my attitude - I guess that most of his patients tend to follow the advice they are given without question - and told me that if all I was planning to do for the time being was have bi-annual PSA tests, then I might as well do it through my GP. Fair enough I suppose, there doesn't seem much point in seeing a specialist consultant unless you're prepared to do what they suggest. But it's nothing personal and when the time comes, as sooner or later it most certainly will, I will have no hesitation in setting up another appointment.
Life goes on. My PCa journey started on November 6th 2007 when, knowing a hell of a lot less than I do now, I briefly had to face up to the possibility that I might only have a few years left to live. Next I had to deal with the idea that my future might become restricted by impotence and incontinence. Two years later, I realise that I've been incredibly lucky - or so it seems. But it's important to keep things in their proper perspective: in 2000 I had a pre-cancerous polyp removed from my colon and still need to have check-up colonoscopies every few years to ensure there hasn't been a recurrence. At around the same time, it was discovered that I have high blood pressure, so I've been taking medication ever since. My general health is OK; I'm a few kilos overweight but certainly not obese; I have a desk job so don't get as much exercise as I should, and I probably get through 3 or 4 bottles of red wine in a typical week. But I don't smoke, I eat a reasonably well balanced diet and I play golf regularly. What I'm saying is that sometimes you can focus too much on the devil you know, only to be ambushed out of the blue by a stroke or a heart attack.
When I look through the case histories on YANANOW I can recall several men who at diagnosis had very similar PSA readings and Gleason grades to my own. Unlike me, they took the view, with the full backing of their specialist consultant, that the best way to deal with cancer is to immediately cut it out. Within weeks they had arranged for RP surgery. It's true that the only accurate way to assess the level of disease within the Prostate is to carry out a full biopsy after it's been removed, and sure enough in some cases it has turned out that the cancer had been more widespread, or more aggressive than originally thought. But, for the time being at least, that's a risk I'm prepared to take.
Good luck to you all.
I'm continuing with active surveillance (PSA only) for the time being and had been planning to post a proper update in the near future but just wanted to wait for the result of my next 6-monthly blood test, which is due in April / May. I'll get back to you shortly thereafter.
I still look at YANANOW on a regular basis and think it would be a very good idea if any man diagnosed with Prostate cancer was automatically given your website address along with the rest of the contact information the hospital hand out at the time.
Later: I saw my practice nurse today for a routine blood pressure check and have established that my next PSA test is due in May so I'll aim to get you an update before the end of June.
Another thing I established is that I have the right to see all the medical records relating to my case and am planning to to get hold of this information as soon as I can.
Before posting a full update to my story I thought it might be sensible to wait for my six months PSA result and also take the opportunity to check through my medical records to see if I'd missed anything important.
For the past three years my PSA has been holding steady at between 4.3 - 4.9 and another similar result would have prompted me to extend the testing frequency from every six months to once a year. However the latest reading came in at 7.2 - no cause for panic, but a big enough jump to make me want to do another one in November.
According to my medical records, my PSA history over the past 12 years is as follows:
AUGUST 1999: 1.0
MAY 2005: 1.6
SEPT 2007: 5.4
NOV 2007: 9.7 (following biopsy)
MARCH 2008: 6.6
JUNE 2008: 4.9
MARCH 2009: 4.3
OCT 2009: 4.4
MAY 2010: 4.8
NOV 2010: 4.8
MAY 2011: 7.2
If the next reading comes in at above 10 I shall need to think about organizing another MRI, or perhaps a Histoscan, but I'm still resistant to the idea of undertaking any further biopsies.
What I do know however, is that my prostate is enlarged. My medical records indicate that the initial MRI estimated the volume at 37cc (confusingly, it was also referred to within the paperwork I saw as "grams" and "ml", so no idea which is the correct form of measurement). [The terms are interchangeable. Since a prostate gland, like the rest of a human body is composed mainly of water, one ml of water weighs one gram and one ml is also one cc so that also weighs one gram.]
Then a few months later, a newer more sophisticated MRI machine calculated the volume at more like 60cc. So either the first reading was wildly inaccurate or my prostate has been doubling in size at an alarming rate - which, fortunately for me, is unlikely to be the case, since it would now be the size of a basketball. [Although new scanning equipment can make calculations of volume a little more accurate, it is still difficult to calculate the exact volume of a the prostate gland because of its irregular shape.]
Having said that, I do find it increasingly uncomfortable to sit down (or even lay on my back) for long periods and have rigged up my desk so that I can work at the computer whilst standing up. Another unpleasant side effect of an enlarged prostate is the urgent need to visit the toilet for a pee two or three times a night - which probably translates to every two or three hours. And there have been odd occasions during the daytime where I've needed to try and empty my bladder as often as two or three times in an hour. Whilst all of this may seem quite trivial compared to the cancer itself, I know that it's something I shall need to keep an eye on.
Last year I passed the landmark of my 60th birthday and looking back over the previous decade I can see that after years of taking my health for granted my body has reminded me in no uncertain terms that the older you get, the more important it becomes to look after yourself.
It's now coming up to 5 years since my original diagnosis and not a great deal has changed: I had my last PSA reading in November 2011 and was pleased to see that it had gone back down to 5.4 - which is exactly where I started from. My GP asked me if I wanted to do another one in May but I've decided to make the PSA test an annual event unless of course there's a dramatic increase when I have the next one in a couple of months time. I read something about the PSA blood tests eventually being replaced by the more accurate PCA3 Urine test so this is another option that I'll be looking into for the future. [Some information on this test is in the July 2012 E-Letter.] In the meantime, I still have an enlarged prostate which apart from the nocturnal visits to the bathroom, causes me a certain amount of discomfort when I'm seated or even laying down on my back, for extended periods. At the moment it isn't severe enough to consider treatment, but in a year or two I may need to reconsider so I hope that by then there may be a viable alternative to TURPS / Finasteride / Greenlight laser. I still visit the YANANOW site from time to time and continue to find it the best source of information about Prostate Cancer on the Internet.
Best wishes to all
First I must apologise to Terry and Mark for taking such a long time to update my story. It's not that I've purposely been ignoring the various reminders, just that with multiple email addresses I'm afraid that I haven't checked this particular address as frequently as I should.
Having said that, I don't have a great deal to add to my previous update. I've been continuing my policy of active surveillance and have limited my PSA tests to once a year. However as I appear to have missed out 2012 altogether I managed to have two in 2013. The results were as follows:
February 2013: 6.5
September 2013: 7.6
More significantly I decided to schedule another MRI scan as it had been 5 years since the previous one. This was carried out at UCLH in London in December and I got the results back in January. So far as they could tell (having mislaid their digital record of the previous scan!) there had been no noticeable change ("very small lesion in the peripheral zone") although the prostate volume had increased over that period from 62ml to 88ml, which I believe will have led to the slight rise in my PSA level.
As a result of this I still urinate at frequent intervals during the day and have to get up 3 or 4 times on average at night. But I've gotten used to it and usually manage to get back to sleep without much trouble. Apart from that, I find it uncomfortable to sit down or even lay on my back for prolonged periods, but it's by no means unbearable. I'm aware that there are a number of treatments that might help to reduce the size of my prostate but have yet to be convinced that the benefits outweigh the risks, so prefer to wait a bit longer and hope that some better options may become available in the future.
It's now been well over 6 years since my initial diagnosis and, speaking for myself, I remain thankful that I took the time to do plenty of research and make an informed decision rather than rushing headlong into a surgical solution.
Best wishes to all.
My latest PSA results (October) show a slight rise to 9.5 and my GP has recommended that I re-test in 6 months, yet I'm inclined to leave it for another year. I'm pretty sure that the Prostate is still growing and I'd recently been taking Flomax (Tamulosin) to try and reduce the number of times per day (and night) that I need to urinate. However after 3 months I decided that the side effects outweighed the benefits and have stopped.
When I had my last MRI scan at the end of 2013 I was offered the chance to participate in a clinical trial whereby I would be scanned on an annual basis. This appealed to me insofar as the process seems to provide more tangible data on the extent of the disease than a PSA reading might. Unfortunately I have been having problems with my neck and shoulder, which would have made it difficult if not impossible for me to remain in a fixed position for upwards of 40 minutes, so I reluctantly had to opt out.
It's now exactly 7 years since the day I was informed that I had early stage Prostate Cancer and that RP Surgery would be my best course of action. I decided at the time that the best thing for me would be to follow a course of Active Surveillance through PSA tests and MRI scan (definitely no more biopsies!) and still have no regrets. To a certain extent my decision was influenced by some of the case studies I found on the YANANOW website and even now I continue to regard it as a uniquely valuable resource.
These days I don't visit the YANANOW site as much as I used to, so was saddened to discover that its founding father, Terry Herbert, had passed away in August after a long and courageous battle. What impressed me about Terry, when reading his copious updates, was the man's dogged reluctance to hand over full responsibility for his treatment to the medical profession. That's not to say that he didn't benefit from medical treatment, but it was always on his terms - not theirs.
In the process of teaching himself about his own Prostate Cancer, Terry, perhaps inadvertently, became more knowledgeable about the disease than his consultants. He will greatly missed but his legacy lives on in this website.
Best wishes to all.
In the 18 months since my previous update I have had two further PSA tests, the results of which were as follows:
MAY 2015: 9.4
JUNE 2016: 9.1
This reinforces my decision to have blood tests carried out once rather than twice a year. The ongoing symptoms of frequent need to urinate (including at night) are more of a concern, but they would have to get quite a bit worse before I gave serious consideration to any of the existing treatments on offer.
I guess that almost 9 years post diagnosis, the fact that I have a seemingly non-aggressive strain of PCa is something that I rarely think about - but I do still visit this website from time to time.
Best wishes to all.
Six's e-mail address is: ggleason69 AT googlemail.com (replace "AT" with "@")
NOTE: Six has not updated his story for more than 15 months, so you may not receive any response from him.