First of all, bear with me while this Pom whinges for a moment.
Living in the UK it is a sad fact that routine PSA testing is not the norm and is almost being actively discouraged by the Government. Their argument is that PSA testing can be highly inaccurate which will result in false positives and false negatives. This is true. They also say that if routine testing were in place a large number of men would be diagnosed with indolent PCa which might cause excessive worry in the case of Active Surveillance or Watchful Waiting. Maybe. [This is a simplistic approach to a very complex subject. Apart from the very real "PSA anxiety" which results in many thousands of unneccessary procedures as well as concerns, there is an enormous amount of over-treatment associated with PSA screening with very little demonstrated benefit. One authoritative study puts the number of men who have had unecessary conventional therapy at over one million since the inception of PSA testing.]
In my opinion neither of these arguments remotely justifies the fact that we do not have a screening programme, and I have to wonder whether at least part of the Government's agenda is concern about the likely costs if the NHS became involved in routine screening. Unfortunately, despite increasing pressure from lobby groups and PCa organisations, I believe it may be some while before any form of routine screening is implemented. In the meantime, there will certainly be many men with more aggressive forms of prostate cancer who will be belatedly diagnosed after the cancer has spread outside their prostate. It is worthwhile noting, for the benefit of anyone who may not know, that every man in the UK over the age of 50 has the right to PSA testing. You may just need to push a little!
I was fortunate. Courtesy of my employer some years ago I had gone to a BUPA health screening programme which included PSA testing. At that time my PSA was low enough not to cause concern, but high enough to encourage me to have it regularly checked thereafter. Over a period of time it bounced around a bit, but finally shot up from 5.2 µg/L to 7.8 µg/L over a six-month period. [A change in PSA levels within this range is not neccessarily directly associated with prostate cancer since the PSA test is not prostate cancer specific - see PSA 101 and PSA - 28 Day Experiment. This non-specificty is the main reason for experts suggesting that no final decision be made on treatment until a series of PSA tests demonstrates a continuous and increasing PSA level.] My consultant had been offering me the choice of a biopsy on earlier visits, but I think both of us felt comfortable in not going along that route at that time. Obviously, the sudden increase emphasised the need for a biopsy, which took place in April 2009.
With hindsight, and with the knowledge I now have about PSA levels, I would have opted for a biopsy at least 18 months earlier. I have no doubt that I would still have had cancer, but presumably it might not have developed so far.
I have to acknowledge that one of the reasons why maybe I decided not to have a biopsy earlier was concern at the idea of having needles stuck into my prostate. I don't think of myself as being particularly squeamish, but that area of the body is somewhat sensitive! I had also read about and spoken with men who'd had rather painful experiences during a TRUS biopsy. I can only say that for me it was an entirely uneventful procedure. A local anaesthetic was applied beforehand using the same head which operates the biopsy needles. I never felt anything that could even be described as discomfort. A little bit of indignity was the worst part of the procedure!
I had pretty much assumed that I would have a positive diagnosis for PCa. Don't ask me why! However, it still comes as quite a shock, as anyone reading this will know. I have five Gleason 4+3 = 7 cores in the right hand side of my prostate and one in the left. No extra-prostatic spread or perineural invasion was seen. Subsequent MRI and bone scans confirmed that PCa appears to be confined to my prostate although there was a suspicion of left extra-capsular extension. I was staged as being T2b.
A little side-comment here. My consultant urologist, when asked if my cancer was confined to my prostate capsule, said that he 'couldn't confirm that it hadn't gone beyond'. I'm sure he meant well but when I later obtained copies of the biopsy, MRI & bone scan reports for forwarding to another consultant, I found that the MRI scan suggested left extra-capsular extension. I would rather have been told precisely what was written in the reports in the first place. From this I learned a lesson: always ask for copies of all test results.
My consultant suggested the choice of surgery or brachytherapy. I guess it's normal practice these days, but he seemed reluctant to guide me towards a decision, other than providing some basic comparisons between the two treatments. In fact, one of the earliest comments he made was to suggest that I research on the Internet. This I duly did and decided that I really wanted to avoid surgery if at all possible, and thus opted for brachytherapy. At that time my consultant agreed that this would have been his choice if he was in my position.
However, I'd had BPH (Benign Prostate Hyperplasia) for quite a number of years and my prostate was quite enlarged at 52 cc in size and flow rate was slow. I was told that I could not be considered for brachytherapy until my flow rate improved, and I was put on to a three-month course of ADT (Androgen Deprivation Therapy) (Prostap3) with the aim of reducing the size of my prostate and thus hopefully improving flow. At the time, this was a disappointment, as I would have liked to have gone ahead as soon as possible with treatment.
As things turned out, this delay proved to be beneficial, although the side-effects from the ADT were/are not much fun. I started to read as much as I could about various treatments, using sources from the Internet, prostate cancer forums, local PCa support groups, etc. Amongst other possible treatment options I came across High Intensity Focused Ultrasound (HIFU), and over a period of a couple of months started to consider this very seriously.
It seemed to me that it has the advantages of being minimally invasive, has reasonably limited shorter-term side-effects, and offers the possibility of retaining better erectile function and continence than some other treatments. The downside is the fact that whereas there is five-year evidence of oncological outcome comparable with other forms of treatment, there is very little beyond that in terms of 'solid', peer-reviewed data.
I absorbed as much information as I could about the two types of equipment used for HIFU - the American manufactured Sonablate and French manufactured Ablatherm. There are claims made by both of these companies intending to show that their equipment is better than the other one, but I eventually decided that the experience of the operator is probably of greater importance than the type of equipment used. For those who may be interested, perhaps the key difference between the two systems is that Ablatherm use a computer-based algorithm to operate the ablating head, whereas Sonablate rely on the operator to control the ablating head. In both cases, three-dimensional mapping is used to visualise the prostate during the procedure.
HIFU in the UK is not yet approved by NICE (National Institute for Health and Clinical Excellence) which is the body that oversees new treatments and drug regimes, and decides whether they are suitable to be used by the National Health Service. Part of their approval protocol is based on the proven ability of the treatment/drug to do the job safely and effectively, and part of it is whether it can be demonstrated to be 'cost effective'.
HIFU is not approved because it has not yet been able to demonstrate longer term satisfactory oncological outcomes, and partly because treatment up until relatively recently sometimes produced an unacceptably high incidence of urethral stricture and other side-effects.
Not been approved by NICE means no funding from the NHS, so part of my decision-making process involved debating whether I could justify the considerable expenditure for having this treatment done privately.
I explored the possibility of going for treatment to a very well-regarded doctor in Antwerp, Belgium who has treated in excess of 700 patients with HIFU. I also contacted Mr. Mark Emberton at University College Hospital in London who is probably the most experienced person in the UK with HIFU treatment. Having met with Mark Emberton, I liked him and felt confident in him, and decided that if I was going to have HIFU treatment it would be with him.
Mark Emberton recommended a more analytical type of biopsy called a template guided biopsy which involves taking a much larger number of biopsy cores than the TRUS biopsy. The template guided biopsy uses a template grid to ensure accurate coverage of the area within the prostate. I went ahead with this procedure which, like the TRUS biopsy was pretty uneventful, although a general anaesthetic is required.
The results from the template guided biopsy were interesting to say the least. They showed that I have a reasonably heavy burden of cancer in the left-hand side of my prostate, whereas the right-hand side is clear. All well and good, except for the fact that the TRUS biopsy carried out by the NHS had shown a reasonably heavy burden of cancer on the right-hand side of my prostate and a small amount on the left. This was rather confusing and concerning. At the time of writing (early October) I'm still waiting to try and clarify what the exact situation is. As an aside, the template guided biopsy showed that my prostate has shrunk to 28 cc, presumably as a result of the hormone treatment.
Despite the confusion about the biopsies, by mid-September 2009 I had decided that I would definitely opt for HIFU treatment. Towards the end of September I returned to the hospital where I was originally diagnosed, for further flow tests. These demonstrated that while my flow had improved, it was still not nearly good enough to be considered acceptable for brachytherapy. I was told that surgery would now be the recommended option. In light of this news, my decision to go for HIFU seems like a good one!
So, I'm now at the point where I am waiting for my HIFU treatment on 30th October 2009. It seems that I shall have a suprapubic catheter in place for anything between a few days up to maybe 4 or 5 weeks, while the ablated tissue from my prostate is expelled. I believe this is a little uncomfortable and can be damned irritating, but life can be continued reasonably while the catheter is in place.
The major decision yet to be taken is whether I go for a full gland ablation or hemi-ablation wherein only half of the gland is ablated. Obviously, the latter option incurs a much better chance of preserving erectile function and continence but cannot be done unless it is absolutely clear that one half of the prostate is free from cancer. Despite the advantages of hemi-ablation, there is still part of me that feels like going for a full gland ablation regardless, on the basis that it stands the best chance of eradicating the cancer.
I am very much aware that I am not in the best position at the moment to honestly assess whether the greater likelihood of severe ED associated with whole gland ablation is 'acceptable' for me. This is because the ADT has reduced my libido to zero. I can get an erection but have no interest in doing so! Under these circumstances ED doesn't seem too bad (I'm single and not in a relationship at the moment), but how will I feel once my libido has returned but Percy won't co-operate! A difficult decision. I have read 'plaintive' postings from single guys saying how difficult it is meeting up with a lady you like but knowing there is this underlying problem.
Later: 16th October 2009
I had a meeting with my consultant, Mark Emberton, last Monday. Bearing in mind the confusion regarding the location and extent of my PCa, and allowing for the fact that clarification seems unlikely without re-doing biopsies, scans, etc, which would further delay things, I decided to go for full gland ablation.
Having made that decision, I feel very comfortable, because there is part of me that was slightly doubtful about hemi-ablation anyway. I'd prefer to give myself maximum opportunity of getting my PCa under control, rather than increasing the risk of having to re-do HIFU if the first attempt has not been 100% successful. I'm able to come to terms with the fact that full ablation produces a statistically greater chance of ED and incontinence.
Before meeting up with Mark I spent some time with a urological nurse. A lovely lady called Deirdre, who went through everything relating to the HIFU procedure very slowly, carefully and in great detail. I was taught how to self-catheterise which proved to be pretty straightforward and only mildly uncomfortable. It's good to know that if one should experience blockages once the suprapubic catheter has been removed, one has the ability to sort things out oneself without the worry of possibly going into acute urinary retention.
I guess the catheter is inserted for around 12 inches or so before it enters the bladder, which somewhat surprised me. And no, I am not trying to make a point! The procedure leading up to self-catheterisation, and during it, involves being very careful to keep everything as sterile as possible. I was concentrating so much on doing this that I ended up with a certain amount of urine all over the place, firstly when the end of the catheter entered my bladder, and secondly when I removed the catheter. Deirdre cheerfully pointed out that one soon learns the technique by bitter experience!
I questioned her about the suprapubic catheter and she confirmed that it is not painful. Mildly uncomfortable and probably a bit annoying. This ties in with information I have heard from other people who have experienced suprapubic catheters.
I now have to arrange to get hold of pads, catheters, and any other paraphernalia which may be necessary post-HIFU.
This time in two weeks I shall hopefully have completed the HIFU procedure.
Later: October 29, 2009:
I'm now fully equipped with the items that I may need after my HIFU treatment. Incontinence pads and catheters suitable for self-catheterisation. Purchasing incontinence pads tends to bring home the reality of the treatment I am about to undertake. Interestingly, our good old British National Health Service, for reasons best known to itself, has decided I'm allowed to have the catheters on prescription, but not the pads. It's probably best that way around, because I imagine the catheters are not cheap.
It is about four weeks after the end of my three-month period of hormone therapy, and it's interesting to review the side-effects. When I started on hormone therapy it took about 3-4 weeks before I began to experience side effects - specifically hot flushes, poor sleep pattern, constipation, weight gain around the middle, muscle loss, and various other mildly irritating aches and pains.
Towards the end of the three-month period some of the side-effects were tending to reduce in frequency/intensity, but now it seems as though the side-effects are returning rather more strongly. It's almost as though I went through a phase in the earlier stages of treatment where the symptoms were stronger and now I'm going back through that same phase in reverse. Of course, I may be talking complete gobbledygook, but that is how it feels.
Hot flushes at the moment are quite severe and frequent; my sleep pattern is horrible, and the other side-effects are troublesome. Libido is showing absolutely no sign of returning. However, I'm confident that as my testosterone level re-establishes itself, the side-effects should gradually diminish.
On the subject of libido I am able to take wry amusement out of the fact that it will presumably be returning within the next few weeks, but after my HIFU treatment my erectile capability will almost certainly not be so good. You win some, you lose some!
I'm off tomorrow (Friday 30th October 2009) for my HIFU treatment. No food from 9 a.m. onwards. Catch a bus to the rail station, train to London, a short tube journey, and then the hospital in Fitzroy Square. Admission is at 2 p.m. and I guess the deed will be being done from about 3.30 p.m. onwards after administration of a Fleet enema. I shall be in overnight (only because of the anaesthetic) and my sister will be picking me up the following day and driving me home.
I've been busy doing jobs around the house and garden which require stretching, bending or anything strenuous, as I'm not sure what my capabilities will be after HIFU, with a suprapubic catheter coming out of my lower abdomen and a bag strapped to my leg. At least the weather here (UK) at the moment is wonderful; a late Indian summer.
I'm mentally prepared for the HIFU treatment, which I don't anticipate being too troublesome. I just want to get it done and move onwards.
For those may not be familiar with the 'post-HIFU routine', as practised by Mark Emberton and his colleagues, here is a brief rundown. The suprapubic catheter is available to void urine if peeing in the normal manner becomes difficult or impossible because of an initially inflamed prostate area and/or blockages caused by ablated debris from inside the prostate. Normal peeing will be encouraged as far as is possible by turning off the 'tap' on the suprapubic catheter, but it is likely that the suprapubic catheter will need to be utilised on occasions when blockages tend to occur. The suprapubic catheter will not be removed until it can be demonstrated that normal peeing can be done routinely and reliably. I understand that this can take anywhere between 2-6 weeks.
Debris will continue to be freed from the prostate for several months, which leaves open the possibility of blockages happening once the suprapubic catheter has been removed. It is for this reason that I have been taught self-catheterisation which is a pretty straightforward process and frees one from concern about acute urinary retention.
I'll post again after I've been HIFU'd.
I had HIFU treatment with Mark Emberton on Friday 30th October. The procedure went very smoothly.
After uncertainty regarding the extent and location of PCa in my prostate, I eventually opted for hemi-ablation rather than full gland ablation. This decision was very much based on recommendation by Mark, who felt that full gland ablation was not necessary, bearing in mind the results of his template guided biopsy. Time and future testing will tell if this was the best decision, but I have trust in Mark's experience and his caring attitude.
After admission there were the usual procedures - blood pressure, ECG, blood sample, urine sample followed by a Fleet enema.
Mark went carefully through the consent form taking care to clarify the risk factors.
The HIFU procedure was carried out under general anaesthetic and took about 1.5 hours as I had hemi-ablation. It would have been nearer to 3 hours for full gland ablation. I stayed in overnight - I didn't have the treatment until about 9.30pm - and was discharged at 9.45 am the next day. I didn't sleep at all during the night, probably because of the anaesthetic, but I felt OK. Prior to discharge I was taught how to use the suprapubic catheterisation set-up and how to clean and change the dressing where the catheter exits my abdomen. I was prescribed Ciprofloxacin 500mg antibiotic tablets, Diclofenac sodium 50mg anti-inflammatory / analgesic tablets, and Mil-Par laxative to soften my stools.
I slept well on my first night at home and not quite so well last night. I use a larger catheter bag at night which I locate in a bucket at the side of the bed. This makes it easy to locate and carry around and is additional security in case of leaks (which are unlikely).
At this time - the 3rd day after the procedure - I have not yet been successful in voiding naturally. Just a few drops now and then, which feels like quite an achievement! For most of the time I'm still relying on the suprapubic catheter to empty my bladder into a smaller bag attached to my leg.
Mark assures me that once my prostate starts to settle, normal urination will become easier. There is little discomfort unless I turn off the catheter and allow urine to accumulate in my bladder. When that happens, I quite quickly develop a feeling of lower abdominal 'bloating' accompanied by an increasing degree of discomfort. The bloating feeling is probably worsened by the fact that I've been experiencing constipation, which is only now beginning to resolve itself. First decent B/M at midday today which was a considerable relief!
There is intermittent stinging in the end of my penis which can occasionally become a little painful. This is referred pain from my inflamed prostate.
Managing the 'pipework' of the suprapubic catheter is quite straightforward, although a little fiddly on occasions. The main irritating factor is leakage from around the catheter where it exits my abdomen. I'm sure this leakage is only very small amounts but it is sufficient to be rather annoying. Understandably, when I turn off the catheter the leakage is more noticeable because of a build-up of urine pressure in my bladder. The urology nurse confirmed that this is normal and recommended using incontinence pads to absorb excess moisture. I hadn't realised that the design of incontinence pads means that they tend to absorb moisture and remain relatively dry on the surface, thus reducing the potential problem of skin excoriation.
I'm wearing Level 1 Tena pads to catch the few drops that emerge naturally. Hardly necessary yet.
I'm tending to feel a little fatigued, which I guess isn't surprising. Movement is OK, although bending over creates a certain amount of pressure in the lower abdominal area. I went out today and had a short walk. Provided the leg bag is correctly strapped in place, walking doesn't present a problem.
My urine generally clear, but with a small amount of bloody debris from the ablated prostate.
I had a routine telephone conversation this afternoon with a urology nurse. She said that because I have had hemi-ablation the remaining tissue in the other half of my prostate will be swollen, which means that a normal voiding may take longer to achieve than if I had had a total gland ablation. She recommended that I use the catheter for the next 24 hours before turning it off again to try normal voiding.
Overall I am comfortable with the ways things are going so far. It will be nice when the peeing breakthrough happens :)
Later:It is a week now since I had my HIFU treatment, and perhaps it's time to assess the last seven days.
My experience with HIFU has not been one of - 'out on the quad bike the next day; peeing normally from the word go; sex like it never was before'. Alright, I'm being facetious, but occasionally I have seen comments implying that recovery from HIFU is little more than getting over a common cold. In my case anyway it hasn't been that simple but, having said that, it really hasn't been at all problematic (so far!).
Pain. Nothing that I could honestly call pain. A certain amount of discomfort from the incision in my abdomen for the suprapubic catheter, but that rapidly settled down. Some distension in my lower abdomen. And the ' knives'. Not my description, but one used by someone posting elsewhere with experience of HIFU. This is the stinging/pricking feeling in the end of my penis. It has occurred at a fairly low level of discomfort on a number of occasions during the past few days, but it is when attempting to pass urine that it really comes into its own!
It truly isn't sufficiently bad that I would call it pain, but there is a certain quality to the discomfort that makes it a peculiarly ... ... er ... ... interesting. I guess as much as anything it's because of where it's located which is a pretty sensitive area. I understand that some people do not experience this at all; others do and I have no way of assessing how my discomfort compares with theirs. I understand that it is referred pain from the prostate area and, because I had hemi-ablation of my gland, it's possibly worse than if I had had a full ablation, as there is more inflamed tissue remaining. I'm assuming that as the inflammation in my prostate subsides, the 'knives' will decrease.
Other negative aspects. The suprapubic catheter and urine bags take a little bit of getting used to, but one soon gets the hang of things. I am now no longer using a bag, which makes things a lot easier. I still have the catheter in place but I attempt to pee normally as and when I can, although with only very limited success so far. If I feel my bladder is filling up too much I just open the clamp on the end of the catheter and void into the toilet.
I no longer have a dressing at the point where the catheter exits my abdomen. There is still a little bit of leakage at this point (mainly urine; a little bit of blood) so I pull up the incontinence pad a little higher than it would normally would be worn so that it covers that area. I tape down the catheter tube onto my abdomen a couple of inches away from where it exits, just to prevent any tugging.
At the moment incontinence is not an issue, although there are just a few drips on the pad. I am assuming that as my normal urinary function improves so also will the degree of incontinence. However, I'm reasonably confident that this will be relatively short lived.
I can't really comment yet on erectile capability, because I have been effectively neutered ever since being on hormone treatment. My libido is non-existent and therefore erectile functionality isn't currently an issue. Hopefully, once my libido returns, I'll be able to report positively on function. Having said that, yesterday evening I was able to produce definite stirrings as the result of visual stimulation.
I've felt a little bit fatigued this week, but not excessively so. To a certain extent that was the case previously anyway, because I'm still feeling the results of my three months of hormone treatment, despite the fact that technically it finished five weeks ago. I've been out raking leaves, general tidying around in the garden, going into town and doing the shopping, in fact all of the normal type of daily activities, without getting into anything which involves heavy lifting or extensive bending (too much bending tends to be a little uncomfortable in the lower abdomen).
I've been sleeping well at night. In fact, considerably better than I was before HIFU, when I was getting up far too many times during the night as one of the side-effects of hormone treatment.
Constipation has been a pain in the a-s! Again, this is at least in part a hangover from my hormone treatment. It was probably exacerbated by the general anaesthetic. Being constipated when your lower abdomen is already rather tender isn't ideal, but I've been taking the necessary measures to combat it with a certain amount of success.
And that's about it so far. I'm passing small debris in my urine and the occasional larger, bloody chunk which gives me great pleasure because I tell myself that I'm getting my own back on the Pca!
The catheter will need to remain in place until I can demonstrate that I am able to pee freely and routinely, and that I am emptying my bladder fairly completely. I'm not sure how long that will be, but it could be several weeks more. It just depends how things go.
I have a routine MRI scan in a few days time, and a PSA test in three months.
In summary, I am obviously not able to compare my experience of HIFU treatment with surgery or brachytherapy (the other two options that I was considering). Time will tell how successful HIFU has been in terms of retaining continence and erectile function and, of course, in successfully eradicating my PCa. So far, I certainly have no regrets in choosing HIFU. More later.
Later: 14th November Two weeks since HIFU treatment and things are progressing satisfactorily. The ability to pee normally is returning: gradually, sometimes frustratingly, but there is progress day by day. The discomfort in the end of my penis when peeing has reduced to level where it is only briefly noticeable. It seems that the inflammation in my prostate is settling down.
Isn't it interesting how we can take a lot of pleasure from small triumphs in life. Until this morning, after peeing normally, I have always felt that my bladder was not completely emptied, so I have used the catheter to drain out the remaining urine. This morning, I had a pee and it wasn't until about 10 minutes later that I realised it hadn't occurred to me to use the catheter afterwards.
Aside from this, there really isn't very much to report. The catheter incision in my abdomen is a little inflamed, but not infected. I guess this is only to be expected because despite taping down the catheter a short distance away from where it exits, it must be continually moving around as I bend, stretch, etc. I have been told not to use any form of 'lubricant' such as antiseptic ointment, just in case it should adversely affect the surface of the catheter. Warm soapy water is the recommended method of cleaning in that area.
Last Wednesday I walked 10 miles without any difficulties. I had been a little concerned about discomfort from the catheter, but having taken care with padding, waistband, etc it turned out not to be a problem. I normally walk about 25-30 miles a week, and I plan on resuming this from now on. Having said that, the weather here is awful at the moment, so I may just chicken out until it gets better!
I had an MRI scan last Tuesday. The scan supposedly provides higher definition images than normal because it was combined with an injection of Gadolinium which gives the treating physician and radiologist a more detailed picture of the internal organs, tissues, bones and vessels. The results from the scan show that HIFU ablation in my prostate has been carried out successfully, and my consultant says he is very happy with the result.
It is now 6 weeks since the end of my three month period of ADT. I'm still getting occasional hot flushes and my libido is virtually non-existent. Aside from that, I get the impression that the other side-effects are gradually dwindling.
I don't yet know how long it will be before the suprapubic catheter can be removed. The urology nurses are being wonderfully supportive in calling me every few days to check how things are going. At a certain point along the line they will probably ask me to start carefully monitoring how much urine is left in my bladder after peeing. If the amounts remaining are low, I guess it will be time for the catheter to come out. This will be done by a District Nurse who will come to my home. I understand it is a very quick and simple procedure, and will be necessary for me to lie still for a period afterwards to give things a chance to close up a bit.
One way or another life is virtually normal.
5 weeks since HIFU treatment and not much to report, which is a good thing!
I have been through phases of passing mostly small pieces of debris from my ablated prostate, but one piece measured 4 cm (1.6 inches) in length. Fortunately, that one came out via the catheter!
Recently, there has been little debris but I have been experiencing a certain amount of blood in my urine and urethral irritation. I am told by the ever-helpful urology nurses that this is normal, and it is now gradually decreasing.
About 10 days ago I started monitoring how much urine was left in my bladder after peeing. This was done by draining via the catheter after I had voided normally. The amounts measured over a period of days were typically between 20 - 80 mL (0.7- 3.4 fluid ounces) which the urology nurses considered to be sufficiently satisfactory for the catheter to be removed.
My catheter was removed at home by a District Nurse four days ago which was a relatively uneventful procedure. Initially, it was reluctant to come out. Apparently this occasionally happens when it has become stuck to the inner wall of the bladder. First attempts to remove it were becoming a little painful - interestingly, the pain was not at the catheter incision but was referred to the end of my penis - so the nurse applied an anaesthetic gel around and into the catheter incision and waited for five minutes or so. This worked effectively to limit the amount of discomfort, and the catheter came out after a certain amount of tugging.
I was glad to be rid of it! The immediate feeling of 'freedom' was wonderful! It was not that it had been particularly uncomfortable, but I was often aware of this encumbrance which conflicted with the waistband of my trousers. I will need to keep a dressing in place for about a week.
Overall, I am very happy with progress. The strength of my stream is gradually getting better and frequency is reducing. There is no incontinence and only a slight degree of urgency. There is every indication that erectile function is virtually normal. I'm back to walking a couple of times a week, doing distances of 12-14 miles each time.
I'll report again on the situation around the end of January when I have my first PSA test.
19th February 2010: Post-HIFU update
Towards the end of December I developed a UTI (Urinary Tract Infection)which was successfully treated with Ciprofloxacin. Fortunately, I did not experience the flu-like symptoms that can sometimes occur. In my case there was urethral irritation and a small amount of blood in the initial part of my urine stream. I understand that it is not unusual to experience a UTI following HIFU or indeed any other treatment involving the urinary tract.
Generally speaking things are very satisfactory. No problems with incontinence or ED. I am at the moment experiencing a slight reduction in flow, but a urine analysis has revealed no UTI. I had wondered whether I was developing a stricture, but on the suggestion of the urology nurses I carried out self-catheterisation without any problem. In their opinion, if I had any degree of stricture, this would have made self-catheterisation difficult. At the moment, I'm assuming that the reduction in flow is just part of the ups and downs that one must expect during the first six months or more following HIFU.
Two days ago I received the result of my first PSA test since having HIFU treatment at the end of October.
A figure of less than 2.0 ug/L would have been considered to be a reasonable indication that the treatment had been successful, bearing in mind that I had focal HIFU treatment and therefore have prostate tissue remaining. My result was 0.4. Very encouraging, and it allows me to 'look forward' without needing to contemplate further treatment in the near future. Similar tests will continue for many years at gradually increasing intervals, and it is necessary to at least acknowledge the possibility of a re-occurrence, but for the time being all is looking good.
I shall update again at around six months after my HIFU treatment.
28th May 2010: Post-HIFU update My second PSA test result (approximately 6 months after HIFU) was 0.5. This was 0.1 up on the previous reading of 0.4, but unless the trend continues I am not unduly concerned. The urology nurses seemed to be completely unfazed by the increase. They said that it is quite usual for there to be fluctuations up and down during the first year or so.
About 10 days ago I had a high resolution MRI scan utilising a contrast agent called gadolinium which is injected partway through the scan so that areas can be compared before and after the contrast agent takes effect. For a radiologist, the comparison allows potentially greater accuracy in identifying tumours.
The subsequent letter from my consultant said - "Please find attached the MRI study. You will see that this is completely clear. The necrosis has completely resolved and there is no MR evidence of any residual tumour in the treated left side. The untreated right side, as we would expect, also shows no evidence of any tumour. I hope you find this reassuring."
Of course, no MRI scan is able to show up very small tumours, but I find the result of this scan, combined with the PSA reading, to be very encouraging.
It was my decision to have the MRI scan; not a suggestion from my consultant. My reasoning for wanting the scan was to satisfy a nagging feeling I couldn't get out of my mind completely regarding the conflict in my diagnoses last year.
Shortly after being first diagnosed I had had a TRUS biopsy organised by the National Health Service which showed a preponderance of Gleason 7 on the right side of my prostate, and a small amount on the left. An NHS MRI scan also indicated cancer on both sides of my prostate with possible extracapsular extension on the left. Later on I had a multiple-core template guided biopsy carried out privately which showed the right side of my prostate to be clear, but with some tumours on the left. Based on this I had HIFU ablation on the left side of my prostate only.
I find it difficult to believe that the NHS TRUS biopsy could have got things completely wrong, but it does seem as though this latest high-resolution MRI scan indicates there is no cancer in the right side, and that the left side has been satisfactorily treated. This leaves the rather worrying implication that something went badly wrong with the NHS biopsy results. I could understand a false negative, but a false-positive is rather more difficult to come to terms with. [The incidence of false positive results from standard MRI scans (identifying tumours that do not exist) is similar to the incidence of false negative results (failing to identify tumours that do exist). This leads doctors like Dr Strum to say they are a waste of resources.] I do hope that there isn't somebody out there who was diagnosed as being clear and in fact has Gleason 7 on the right side of his prostate.
When the conflicting diagnoses first became apparent I contacted my original urologist and asked for the pathology to be re-examined. I'm fairly sure that this did not happen; I was certainly not given any indication that it had.
So now I am able to look forward positively to what I hope will be a continuing series of good PSA results. I have absolutely no problem with incontinence, and sexual function is 100% aside from the fact that I now have retrograde ejaculation. Apparently this sometimes happens after HIFU and sometimes does not.
I am experiencing quite slow flow and a fair degree of nocturia. The urology nurses have told me that they have known it take up to 12 months for everything to fully settle down. I had my flow measured a few days ago and it was deemed to be sufficiently slow for it to be worthwhile for me to see the consultant again in a couple of weeks time to discuss the situation. Residual urine remaining in my bladder was checked by ultrasound and that was satisfactory. I am taking into account the fact that prior to HIFU I experienced slow flow and nocturia due to BPH, but I had been led to believe that perhaps HIFU would improve the situation, although this was not guaranteed. There is just a possibility that I might have a stricture, but I think it is unlikely.
Overall, as long as things don't get any worse with regard to flow and nocturia I would find the situation to be acceptable. However, it would be nice if some improvement could be achieved. At the moment, the most important thing is that my PCa appears to have been halted in its tracks.
16th August 2010: Post-HIFU update.
I had a cystoscopy in July 2010 to check whether my slow urine flow and nocturia might be the result of a stricture caused by HIFU treatment. The cystoscopy showed clearly that there are no strictures, but my urethra is being distorted and possibly slightly compressed because I had hemi-ablation of my prostate resulting in there being tissue on one side of my prostate but not the other.
According to my consultant, Mark Emberton, this is the first time he has seen this problem following hemi-ablation treatment. It is possibly something that may need to be taken into account in the future when considering hemi-ablation / focal treatment. Sorting my current problem out could involve a relatively simple surgical option, drugs, or things could be left as they are.
I have decided to review the situation with Mark Emberton in October 2010 at the first anniversary of my treatment. The slow flow and nocturia are an inconvenience but I could happily continue to live with things as they are, as long as they don't get any worse. At the moment they are about the same as they were prior to HIFU treatment.
Until June 2010 I had not had a sexual partner since my HIFU treatment. During the first few occasions of sexual intercourse in June I was finding that I would start off with a good erection but this would dwindle part way through. I suspect at least part of this problem was in my mind rather than elsewhere! Fortunately, 10 mg doses of Cialis sorted out things most satisfactorily for a while, and I have since found that I can manage normally without it.
The third of my three-monthly post-HIFU PSA test results came through recently. It was 0.5 µg/L. After my treatment I was told that a PSA reading of less than 2.0 would be considered acceptable, bearing in mind that I have half my prostate tissue remaining. The 3-monthly PSA tests in February and May 2010 were 0.4 & 0.5 and now 0.5 in August. It is not unusual for the reading to rise slightly during the first year or so, particularly after hemi-ablation.
Around the time of my first two PSA tests I was a little nervous awaiting the results. For this most recent one, I found that I could be more relaxed about the situation, and the latest reading gives me even more confidence.
It's relatively early days yet, but things are looking optimistic.
Looking back I see it was in August 2010 that I last posted at this forum. I think this is indicative of the fact that I am now getting on with life and 'forgetting' about my prostate cancer for much of the time.
A resume of my current situation:- I had hemi-ablation HIFU with Mark Emberton in London at the end of October 2009. The quarterly PSA results since then have been 0.4, 0.5, 0.5, 0.6 and 0.7. Normally, an increase like this would have concerned me considerably, but Mark Emberton said right from the beginning that with half my prostate tissue remaining it is likely that my PSA will rise for some time.
However, when I met up with him for a routine meeting a couple of weeks ago, he suggested that an MRI scan might put my concerns to rest. I had a 3 Tesla scan which incorporates a gadolinium contrast agent. MRI scans are by no means definitive in their results, but it is claimed that this higher resolution Siemens machine used in conjunction with the contrasting agent allows a good radiologist to come up with some reasonably precise results, although micro-metastases will of course most likely not be picked up.
The report following my previous MRI scan in May 2010 read: "You will see that this is completely clear. The necrosis has completely resolved and there is no MR evidence of any residual tumour in the treated left side. The untreated right side, as we would expect, also shows no evidence of any tumour."
I have just received verbal confirmation of the results of the recent scan which says that that the scan has a stable appearance compared with the previous scan done in May 2010. It also states that my rising PSA is commensurate with the amount of remaining prostate tissue. Finally there is a comment that there is a 'low probability' of there being any significant tumours present.
So, I'm a happy bunny at the moment, although I shall be even happier once the PSA readings stabilise.
Regarding side-effects, flow and nocturia are still a problem, but they were before HIFU. Mark reckons that the remaining tissue in my prostate is quite possibly tending to push my urethra into the void left on the other side of the prostate, which may be causing at least some of the problems. I shall be going on to Dutasteride shortly to see if that will help by shrinking the remaining prostate tissue. If this proves to be unsuccessful - it will take about 3 months before it begins to work - there is a surgical procedure, probably the equivalent of a TURP, which might be a possibility, although I would have to think long and hard before agreeing to have this.
In the early days I had some problems maintaining an erection, and this was easily sorted out using Cialis 10 mg. However, it has been many months since I have felt the need to use Cialis and everything seems to be working satisfactorily.
30th of March 2012: Post-HIFU update
A year has certainly flown by since March 2011! In July 2011 I had another PSA test which showed that my reading had gone up from 0.7 ug/L to 0.9 ug/L over a period of about 6 months. This gave me some cause for concern, but Mark Emberton remained reasonably confident that the increase was because of hyperplasia in the remaining 50% or so of my prostate tissue.
I had eventually decided against taking Dutasteride to try and improve my problem of slow flow. It seemed to me that the potential for erectile problems, decreased libido, gynaecomastia, and perhaps 'masking' of the true situation with regard to possible remaining tumours outweighed the potential benefits. Mark was in agreement with this decision.
In October 2011 I had a flexible cystoscopy to again check that there were no problems likely to be causing my poor flow and nocturia, other than mentioned in my previous posting. The result of that examination was satisfactory, but it was again obvious that there is distortion of my urethra within the prostate caused by the remaining prostate tissue tending to push the urethra into the void left where tissue has been removed by HIFU.
I received the result of my latest PSA test yesterday which was 1.0 ug/L, an increase of 0.1 ug/L over a period of 8 months. I'm encouraged by this results as it shows a slowing of the PSA 'velocity', and I am still pretty confident that it is prostatic hyperplasia that is causing the increase. I have yet to speak with Mark Emberton, but I'm fairly sure he will feel the same.
So, where do I go with regard to poor flow and nocturia? The flow situation is just about acceptable at the moment and I never feel that I'm likely to go into urinary retention. It's worse at night, which is compounded by the fact that I'm having to get up to urinate more than I would wish.
It's a little difficult for me to put my problems of flow and nocturia into perspective. I was corresponding with someone recently who was really quite put off the idea of HIFU having read what I have written here about these problems. Yes, they are irritating, but they are not life-altering, and it's a little difficult to be sure just how much they have been caused by HIFU. I had the problems prior to HIFU and I'd been seeing a consultant for some years before about limited flow, and had been considering a TURP. It is now 2 1/2 years since my HIFU procedure, and it is quite possible that flow and nocturia would have worsened during that time anyway. However, I'm sure that HIFU has not helped the situation, but there is no way that I would want to put anyone off HIFU because of my particular problems, which I believe are not necessarily typical.
I have discussed with Mark about the possibility of a hemi-TURP to relieve the flow situation. My primary concern about having a hemi-TURP (aside from the fact that no surgical procedure should be entered into lightly) is whether it might affect my erectile capability. Mark says it is most unlikely to, but I understandably have some doubts.
At the moment my erectile capability is 'healthy'. I have no problem in obtaining an erection and maintaining it for a reasonable duration; plenty sufficient for normal and enjoyable intercourse.
It will tend to dwindle after some time, but then I am coming up to 70 years old and cannot expect the vigour of a younger man, HIFU or no HIFU!
21st January 2013: Post-HIFU update
It's now coming up to 4 years since my prostate cancer diagnosis (April 2009) and a little over 3 years since I had HIFU.
I had a PSA test last November with a reading of 1.2 ug/L. This was up from 1.0 ug/L 8 months previously. As you might imagine, I was a little concerned about this relatively steep increase, although I was always bearing in mind that it could be caused by benign prostatic hyperplasia rather than tumour growth.
On 1st December I had a 3 Tesla MRI scan which included a gadolinium contrasting agent. The resulting report indicated that there was no apparent change from my previous scan in March 2011, which in turn was the same as one in May 2010.
As I've mentioned in an earlier comment, an MRI scan is by no means definitive, but the increasing accuracy of the best scans should be able to resolve any significant change in the situation. There is a video at the link below on the current state of MRI scans, and also template guided biopsy versus TRUS biopsy. http://www.nuadamedical.co.uk/ It is a promotional video, but in my opinion contains some interesting and helpful information.
I subsequently had a meeting with Mark Emberton who was entirely happy with the result of the scan and, for the time being, is content to assume that my rising PSA is caused by BPH. I shall have another PSA test in 6 months and report back to him then.
We discussed my ongoing problems with the flow and nocturia. I said that daytime flow, although slow, is quite manageable, and I'm not experiencing any significant degree of frequency. At night, my flow is very poor. If it were as slow during the daytime, I think I would have real cause for concern, but it's obvious that sleeping has an effect on flow. Frequency varies between 2 times on the average night, and sometimes 3 or 4. I would prefer it to be less, but it is acceptable.
I have found that half a dose of Ibuprofen (200 mg) can definitely help to reduce the number of times that I need to get up during the night. This is not something that I do routinely, and not something that I would necessarily recommend to anyone else, but Mark Emberton confirmed that it is working because it tends to slightly inhibit kidney function.
Erectile capability continues to be quite satisfactory :)
April 2014: Post-HIFU update
To possibly save anyone wading through the history of my prostate cancer treatment above, here is a summary:-
I was diagnosed in April 2009 with a Gleason 7 cancer (4+3). There was some possibility that it might have spread outside the prostate capsule, but this was uncertain. I was not considered to be a suitable candidate for brachytherapy and was told that a prostatectomy was the only possible solution. I was not comfortable with this idea.
After a lot of research - mainly online - I decided to have HIFU with Professor Mark Emberton in London UK. An MRI scan and a template guided biopsy beforehand indicated that the tumours appeared to be confined within my prostate and as only half of my prostate was significantly affected I had focused HIFU treatment during which about 50% of my prostate tissue was ablated.
My first post-HIFU PSA test produced a value of 0.4 ug/L which was considered to be very satisfactory bearing in mind that I had half of my prostate tissue remaining. Since then, over a period of 4.5 years, my PSA readings have gradually crept up. The latest one a couple of months ago was 1.6 ug/L. Although there is the obvious possibility that the increase in PSA may be the result of tumour growth, there is also a good likelihood that it may just be caused by benign prostatic hyperplasia in the remaining tissue. Regular high resolution MRI scans, the last one in December 2012, have indicated no apparent tumour growth.
The only slight downside of my HIFU procedure is the fact that because I was left with a void in one half of my prostate capsule, the tissue in the other half has grown (probably because of BPH) and has tended to push my urethra into a distorted shape which has caused increasingly slow urination. I have been comfortable to live with this up until now, but it has reached a stage where urination is very slow, particularly at night, and I've decided to go ahead with a hemi-TURP as recommended by Mark Emberton. This will involve removing some of the remaining tissue in my prostate to relieve the pressure on the urethra and hopefully improve urine flow. The tissue removed will be examined to see if there is any evidence of tumours to the extent that further action needs to be taken.
I had been told that there is a 1% possibility of incontinence resulting from this procedure, although at this stage I'm not sure whether this is complete or partial incontinence. I've also been told that anything which involves 'messing around' with the prostate can potentially affect erectile function, although this is not considered to be likely. Since having my HIFU procedure my erectile capability has returned to pretty much what it was before, taking into account the fact that I'm not getting any younger.
I'm not yet sure when the hemi-TURP will be carried out, but will report later on after it's been done.
In May of this year I had another high resolution MRI scan which pleasingly indicated that there has been no significant change since the last scan, which in turn showed no change from the previous one, and so on.
Last week I met up with a consultant at University College Hospital to discuss having a TURP procedure to alleviate my problem of slow urine flow at night. I've been told that I should be able to have the procedure in about 3 months time.
I raised the matter of the 1% possibility of incontinence and it was confirmed that this 1% refers to permanent incontinence. Not a pleasant thought, but if things continue as they are at the moment I can foresee the possibility of finding myself in a situation of acute retention some time, so I believe it is necessary to have a TURP. There is also a possibility of reduced erectile function. The likelihood is estimated to be about 10%.
The TURP procedure will involve two nights in hospital during which I shall have a Foley catheter. Assuming that flow is reasonable when the catheter is removed I shall then be able to go home.
Tissue removed during the procedure will undergo histological examination. I almost certainly have some low-grade tumours in the remaining tissue in my prostate, which MRI scanning has suggested should not be of significance, but it will be encouraging to have histological confirmation of this.
I had a TURP procedure in early February this year. The whole thing was pretty straightforward, but involved 2 nights in hospital because the catheter needed to be in for a day or more, and they won't discharge you until you can demonstrate being able to pee freely without the catheter.
There was very little discomfort at any time and, although I took things slightly easier for the following couple of days, I never really felt restricted. As a TURP is normally done under general anaesthetic, it is recommended that one shouldn't drive for a few days. There was no problem with incontinence, and erectile function has been very satisfactory as before.
Initially, urine flow was fantastic. It's amazing, after several years when flow has been quite restricted, just what pleasure there is in being able to pee freely! However, I found that the initial flow fairly soon became rather less good, although it was always considerably better than it had been before the TURP procedure, particularly at night when previously it had been a mere dribble.
I had initially been put on the course of Ciprofloxacin following the TURP procedure, and shortly after that finished I found that I was getting discomfort in the end of my penis which, from previous experience with my HIFU procedure, was referred pain from my prostate. As this continued, I wondered whether I had an infection. I contacted the hospital and a second course of Ciprofloxacin was prescribed. Once again, whilst taking the antibiotic there was virtually no discomfort, but once I stopped the discomfort returned. After a week or so I arranged to have a urine sample tested for infection; the result came back indicating there was nothing to be concerned about.
During the ensuing weeks, I found that sometimes I would have periods when there was a fair degree of discomfort and other periods when there was little. Flow would be reasonably good when there was minimal discomfort, and not so good during periods of greater discomfort. I also found that flow would be affected by the extent of wind/faeces in my rectum, which is unsurprising bearing in mind the close proximity of the rectum to the prostate.
On 11th of June I had a follow-up appointment to my TURP procedure. I had a good discussion with a competent and friendly urological surgeon who was quite surprised when I said that urine flow had reduced somewhat from the initial excellence status following my TURP. I said that I was wondering whether I might have prostatitis, and the surgeon agreed that this is a possibility, particularly bearing in mind that histology on the removed tissue indicated "mild, patchy, chronic inflammation". This would have been considered not unusual unless I had mentioned the discomfort I was experiencing.
Under the circumstances it has been decided that I shall go on a month-long course of Ciprofloxacin combined with Tamsulosin and Ibuprofen. I have little doubt that this will subdue the discomfort in the shorter term, but it will be interesting to see how things turn out longer term.
As an aside, but extremely important, the histology on the removed tissue showed no sign of cancer tumours. Of course, there may still be small tumours within the tissue remaining in my prostate, but my MRI scan in May 2014 indicated nothing to worry about, and I'm reasonably confident that nothing has changed significantly since then. I have been recommended to continue with PSA testing on a six monthly or annual basis, and only if it rises above 2.5 ug/L from my last recorded 1.6 ug/L, should I need to consider another MRI scan.
It is now 5½ years since I had my HIFU treatment. I don't delude myself that I am for ever clear of prostate cancer, but as the years go by (and I get older!) I feel reasonably confident there is a good chance that things will stay in remission.
In about 4 months time it will have been 7 years since I was diagnosed with prostate cancer. I was told that there was no treatment option other than a prostatectomy. If I had gone ahead with a prostatectomy it seems likely that I would be in the position I am now with no apparent resurgence of the disease, but maybe those 7 years would not have included virtually unaffected erectile functionality, and might just have involved problems of continence. Partly by chance, partly by doing a lot of research, I eventually ended up having HIFU with Marker Emberton; a route I am heartily thankful that I found.
As mentioned earlier I had a TURP procedure in February 2015. This was not as successful as I had hoped it would be in terms of improving flow, but things are better than they were beforehand and I'm happy to live with the situation. I have had ongoing intermittent discomfort (irritation in my penis referred from my prostate) which is almost certainly low grade prostatitis. Again, it is something I can live with, and I don't think it relates in any way to my TURP procedure.
I had an MRI scan in April 2016. This was done on the NHS rather than privately. When I subsequently met up with a consultant (not Mark Emberton) he seemed to want to discuss my post-TURP situation rather than the result of the MRI scan. Eventually, he said that the scan appeared to show a possible small mid-prostate tumour, but said that the findings are probably not of significance. Previous scans have also shown possible small tumours, so for the time being I am not too concerned.
My PSA is up a fraction, but this could just as easily be because of benign prostatic hyperplasia, particularly bearing in mind that I have half of my prostate tissue remaining as I had hemi-HIFU. I shall be having another PSA test in about a month's time and will then be meeting up with Mark Emberton to review the situation.
I'll report back after that.
My PSA is still rising a bit. In March 2016 it was 2.2 and then dropped to 1.9 in September 2016. A test in March 2017 gave a result of 2.6. As always, bear in mind that I have only half of my prostate tissue remaining after hemi-HIFU so my PSA results cannot really be directly compared with someone who has a full complement of prostate tissue. At this stage it is difficult to know whether the rising PSA may be primarily due to tumour growth or prostatitis.
A MRI scan in April 2016 showed a small area which could possibly be suggestive of a very small tumour recurrence. Another MRI in April 2017 also indicated the possibility of one or more small tumours on the right side, but the overall assessment was no more certain than the year previously.
I had a telephone consultation with Mark Emberton. He agreed that the fact there has been no significant change in the MRI results between April 2016 and April 2017 indicates that if there is tumour growth it is not fast. He also said that prostatitis can be the cause of rising PSA. I have decided to leave things until November this year, when I will have another PSA test. If it is still rising significantly I shall probably have a template guided biopsy.
It is now coming up to 7 years since I had my HIFU treatment. Even if it should turn out that there is tumour growth in the untreated half of my prostate, I am happy that I made the decision not to have a prostatectomy. HIFU has given me seven years of virtually normal function whereas the outcome after prostatectomy would almost certainly not have been as satisfactory.
Aside from possible tumour growth, I am experiencing quite a lot of aggravation from prostatitis. Mark Emberton has confirmed that it is extremely difficult to treat. I have had courses of antibiotics in the past which provide some abatement of symptoms, but don't appear capable of completely clearing things up. A TURP procedure in February 2015 was not as successful as I had hoped it would be, but flow is better than it was before.
Overall, I'm comfortable with the way things are. I will report back once I know the result of my next PSA test.
Jeremy's e-mail address is: jeremyb2 AT waitrose.com (replace "AT" with "@")