YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Jeremy Bacon lives in Great Britain. He was 67 when he was diagnosed in April 2009. His initial PSA was 7.8 ng/ml, his Gleason Score was 7 and he would have been staged T1c. His choice of treatment was HIFU (High Intensity Focused Ultrasound) with neo adjuvant ADT (Androgen Deprivation Therapy). Here is his story.

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

 

UPDATED

November 2009

 

 

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.

Cheers, Jeremy

 

UPDATED

December 2009

 

 

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.

 

UPDATED

February 2010

 

 

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.

Jeremy's e-mail address is: jeremyb2@waitrose.com