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Trip Down The Prostate Cancer Highway©
by Tony Watton
Right at the outset I need to emphasise that the following account is my own personal continuing adventure. The errors and omissions I have made in this and my approach to prostate cancer are all my own work. Every man's experience is an intensely personal one and each needs to discover the best way forward for himself, based on research, beliefs, expert advice and more than a little bit of luck (not necessarily in that order). Anyway, for what it's worth - here goes!
History Before February 2004
I was born in 3/11/44, which made me nearly 60 years old in February 2004.
In common with many men nowadays, from September 2001 I had been having reasonably regular health check-ups that included blood tests and the occasional digital rectal examination (DRE) for any evidence of problems in that area.
By the end of 2003 my GP was becoming concerned about the size of my prostate gland, which he detected was becoming enlarged and, I think, somewhat knobby. As can be seen from the PSA chart, my PSA was also at quite a high level (compared with the normal level of 4) at around 8. In retrospect, what was probably happening during this two-year period was what is called "watchful waiting". My personal view is that it does not appear to be very productive to be watching and waiting for things perhaps to get worse which, in my case, they certainly did!
Updated PSA chart as at 2/6/17
Having been booked in to see a local urologist, I had some prostate biopsy samples taken and then received the news that, "Well, you do have prostate cancer and here are your alternatives". I must admit I sat through that appointment in a bit of a fog, trying to absorb what I was being told but overwhelmed by the thoughts of what the consequences of the news might be.
The Gleason score for my cancer was 6, Stage 2 and the PSA at the time was 9.3.
My options for treatment were:
Watchful waiting (not preferred as mentioned above);
Radical prostatectomy (not keen on possible incontinence, impotence);
External beam radiotherapy (at the time a high risk of collateral damage to adjacent organs and relatively imprecise targeting so not preferred);
Low dose rate (LDR) brachytherapy with implanted radioactive seeds (worry about seed migration or poor location of the seeds, so not preferred);
High dose rate (HDR) brachytherapy with temporary implanted tubes for insertion and withdrawal of a radioactive source (fewest complications and/or side effects so my preferred option).
I was referred to an oncologist at the Peter MacCallum Cancer Centre in Melbourne for a further consultation as their reputation for treating prostate cancer was highly regarded.
Treatment for Prostate Cancer
At the consultation in Melbourne in March 2004 I was offered the opportunity to participate in a clinical trial to determine the effectiveness of HDR brachytherapy as a monotherapy. Normally, HDR brachytherapy is offered as a primary treatment to be followed up by external beam radiotherapy (EBR) a short time later. In view of my beliefs about the possible complications of EBR I was keen to be considered for the clinical trial and so opted for this course of action.
I was admitted
11/5/04 after fasting
(compulsory from ) and an evening enema.
initial formalities, I
operating theatre where I had
a spinal block administered to anaesthetise me from the waist down.
ultrasound probe was inserted into my rectum and this was used to guide the 15
straw length, 3mm (about) diameter hollow plastic “needles” that were inserted
into my perineum. These were held in place with a plastic template that was
sutured to my body with four sutures. A catheter was inserted into my bladder.
triangular wedge was placed between my knees to prevent my legs closing. It was
also stressed to me that under no circumstances was I to move so that the
needles would touch the mattress. In other words, my pelvic area was motionless
on the bed.
this procedure a CT scan was taken to make sure that the needles were placed in
the correct positions.
Then I was brought to the ward
to thaw out via the
Recovery Room where I found
three other patients.
I was hooked up to a saline drip (12 hours per bag) and PCA morphine (1 ml
per 1 cc). After the anaesthetic wore off I felt lower back
and during the afternoon and evening used five doses of morphine. These were
automatically registered on the delivery pump equipment. I also had two Panadol
and vomited liquid, probably because of my empty stomach. I was given some
anti-nausea medication via the drip.
frequent checking of blood pressure, pulse and O2 saturation level.
At about I was taken to the radiation theatre, still on my bed, where
I was connected to an after-loader by the 15 needle tubes that had been
implanted during the morning. The connecting tubes were hollow metal flexible
tubes with a secure fixing arrangement at each end, about 500 mm long. The
after-loader had a disc arrangement facing me with a number (maybe 25) of
positions around the edge of the front face to which the tubes were fastened.
The radioactive pellet (I think less than rice grain size) of Iridium 192 was
stored in a lead lined box and was attached to a control wire.
There was a
dummy run during which each tube was checked for a clear run. A set of square
lead plates each 1m2 were then placed alongside my bed to shield the
radiotherapists, who were housed in an adjacent room.
treatment lasted about 15 minutes, with the pellet being inserted under computer
control into each tube in turn, for a predetermined time at different positions
within the prostate gland. The duration at each position depended on the
requirement for treatment at each location. A red light was on whenever the
pellet was out of its secure storage container.
checked with a Geiger counter to ensure the pellet was not still in my body I
was then returned to the ward via the Recovery Room. I could only manage soup
for dinner, through a feeder with a straw, because I could only lift my head a
exercise was to gently raise my knees so that my feet were flat on the bed and
to bend my upper body from side to side. It was vital for me to keep my pelvic
area still as the needles protruded about 70 mm from my body and they were not
to touch the mattress, otherwise their positions in the prostate could have
changed. Consequently, I was on my back for a total of 56 hours from
on Tuesday until about
on Thursday. I spent a restless Tuesday night with many interruptions for checks
by the nursing staff while they monitored various alarms and changed saline
consisted of two slices of
toast with jam, fruit juice and a cup of coffee.
during the day I was gently
rolled onto my side while my
back was washed and rubbed with Sorbolene to prevent stiffness and sores. This
was a welcome change from lying on my back inert, even though it lasted for only
a few minutes at a time.
Lunch was a
small pack of sandwiches and a cup of coffee.
At about I was taken for my
treatment session. This time I was more aware of what was happening and roughly
counted the time in seconds for each dose of radiation. This was when I
discovered that the treatment times varied for different needle positions. The
times varied for different needle positions between 10 seconds and 1 minute. I felt more relaxed this time,
with no back pain.
soup, ice cream, jelly and a cup of coffee. I deliberately refrained from eating
much because the last thing I wanted was to have a bowel movement while lying
flat on my back. My diet was deliberately set to be low residue meals. And it
wasn’t as though I was expending much energy anyway.
sleep was difficult, with many interruptions. Eventually the night passed, with
the aid of a sleeping tablet.
The third day, 13/5/04
was uneventful, lying
on my back, talking to other patients, listening to my small radio and waiting
for to arrive.
At I was wheeled down to the radiation theatre for the third
and final treatment session and removal of the needles and catheter.
me also went the morphine that I was going to need prior to the removal of the
needles. The treatment lasted slightly longer this time because the radiation
source had decayed (half life of 74 days) over the three days of my treatment.
At the end
of this treatment I was advised to release a dose of morphine before the removal
of the needles. The doctor removed the four sutures holding the plastic plate in
place and then asked me to breathe in and out deeply three times and to hold my
breath on the 4th. As I reached the 3rd I felt a sudden tearing sensation as all
15 needles and the template were removed from my body. I think the ordeal would
have been worse if each of the needles had been removed separately. The catheter
was then removed and after a check that everything was OK I was wheeled back to
Recovery to wait to go back to the ward.
in the ward I sat
on the edge of the bed before having a very welcome
shower and changing from the gown into pyjamas. It was a very pleasant feeling
to have the freedom to move as I wanted, with no restrictions. I had my first
solid meal in three days and enjoyed simply relaxing. I was given two laxative
tablets to assist with bowel movements.
I was released
from Peter MacCallum Clinic on
Ural to reduce acid in my urine and Voltaren to help the swelling to go down
where the needles had been.
I spent the remainder of Friday then Saturday relaxing in a nearby hotel to get my body back to normal and returned to Hobart by air on Sunday.
All this happened when I was still working as an accountant with the Natural Heritage Trust Unit of the Tasmanian Government, having taken two weeks sick leave for the purpose.
On returning to work in my three days per week part-time capacity I was able to cope reasonably well with the changes to my bowel and bladder habits that the radiotherapy had caused.
May 2004 to March 2006
During this time, as I was part of the clinical trial at Peter MacCallum Cancer Centre, I had my PSA checked each three months and made frequent trips to Melbourne for interviews and consultations with the oncologist who had treated me in May 2004.
As can be seen from my PSA chart, the level dropped to 2.5 in November 2004 and from that time started to climb somewhat erratically to about 4.4 by mid-March 2006.
The visits to Peter MacCallum Cancer Centre took on something of a ritual for me. I would catch a Thursday early flight (6 am) from Hobart; bus to Melbourne; walk to East Melbourne; cup of coffee and read the paper at Peter Mac cafeteria; appointment for 15 or 20 minutes with the oncologist; walk back to the Skybus terminal; bus to Tullamarine by 2pm and wait for the flight back to Hobart at 5.15pm. People would say to me, "Why don't you stay for a footy match or see the sights over a weekend?" but I wanted the visits always to be strictly single purpose with no distractions. A bit weird, eh?
All this time my urine flow rate was never really good but at the end of March 2006 my life changed direction again.
I was busy planting trees at our 4 ha Sandford property when I desperately needed to urinate. I hurried in to the toilet but, no matter how hard I tried nothing came. This was not a good sign. Acute urinary retention is the medical term. I phoned for an urgent appointment with my GP, was seen immediately and then referred to Calvary Hospital Accident and Emergency Department. I drove myself and the wait to be seen seemed to be interminable, desperately needing to urinate the whole time. The first doctor tried to insert a No 20 catheter to relieve my pain but failed. He then called for a urologist who managed to do the job.
The catheter was left in place and I was admitted for a cystoscopy and possible urethrotomy to clear the stricture. This was done the next day. When the catheter was removed in order to check my ability to urinate I was dismayed to discover that I still could not. The result was that I had another in-dwelling catheter (IDC) inserted and was sent home after another day with a leg bag, to be reviewed after one month.
April 2006 to May 2008
At this next appointment the catheter was removed and I was instructed how to perform intermittent self-catheterisation. Initially this was to be a daily requirement, slowly becoming less frequent until after a few months I was using a catheter once a week to ensure the urethra was kept reasonably clear. This has worked quite well with only one or two occasions when I have had to revert to more frequent uses of the catheter.
My problem is that the urethral stricture is too close to the external urinary sphincter to be cut away without damaging the sphincter, thus causing more incontinence problems.
I left work at the beginning of April 2006 to concentrate on getting myself used to this new regime. I continued my PSA checks and visits to Melbourne during the remainder of 2006, through 2007 and 2008.
In May 2008 the opportunity arose for me to see a visiting urologist from Sydney for a possible urethrotomy and dilatation of the urethra in an attempt to cure my problems without causing any additional ones.
However, the urologist was not prepared to cut away the stricture for the very same reason that it had not been done earlier. The result was that I was really no better off than I was before the procedure. The dilatation did not result in any appreciable easing of my urine flows.
June 2008 to January 2009
At about this time (June 2008) I started attending a local Prostate Cancer Support Group. It was interesting and enlightening to hear of other men's experiences and is something I intend to continue to do in future.
At one of my visits to Peter MacCallum Cancer Centre the oncologist expressed concern about my rising PSA which, by this time, had reached 11 (June 2008). He considered the distinct possibility that my radiotherapy treatment had failed to eliminate all cancer cells. Apparently, if a patient has three consecutive rises in PSA then it is assumed that the cancer is still present. This had occurred to me from August 2006 to June 2007 (4.2, 4.9, 5.5 and 5.7). On the other hand, there is a phenomenon called "PSA bounce" in which a man's PSA can rise temporarily for no apparent reason (usually within the first 12 to 18 months after radiotherapy) before settling down to a low level. I was hoping that was happening to me but realised the likelihood was that I still had cancer.
The oncologist wanted me to have a CT scan and a bone scan, but not before my PSA had reached a level of 15. This was because at a lower level (such as I was experiencing) the scans might be negative but the cancer was not sufficiently advanced to be detected. I was not happy with this scenario and asked to be referred to a Melbourne urologist for further advice. He also informed me that since 2004 there had been significant improvements in delivering the radiation compared with my treatment.
When the appointments were kept during July 2008 it was explained to me that, because I had already been exposed to HDR radiotherapy, no further radiation treatment could be given. Therefore, my options were: watchful waiting (again); hormonal therapy (not a cure but a delaying tactic); high intensity focused ultrasound (no Medicare assistance therefore $15,000 direct cost and still considered to be somewhat experimental); or salvage radical prostatectomy.
Although I seriously considered hormonal therapy, my view was that if I opted for that course of action I may never have the opportunity for surgery at a later date if the cancer were to spread outside my prostate gland, whereas if I had surgery and it was not successful then I may still be able to have hormonal therapy later on.
Surgery appeared to me to be my best chance of curing me of cancer by physically removing the prostate and cancer cells. Whether it could be done or not depended on a biopsy being positive for cancer, CT and bone scans being negative and the prostate gland being relatively small (40cc or less I think).
My Hobart urologist informed me that nobody would undertake the surgery in Tasmania owing to the high risk of failure and/or serious complications; i.e. death, colostomy bag if the bowel were to be damaged, permanent incontinence, etc.
The biopsy was taken at the end of October 2008 and proved positive for 5% of one of the six samples taken. The scans were done and were negative and apparently my prostate was small enough for the operation to be considered. The urologist told me it was difficult to obtain the biopsy samples as my prostate was hard and somewhat shrunken (I imagine like a prune).
Therefore, on 2/12/08 the
salvage radical prostatectomy
operation was performed in
I returned to
occurred almost immediately, however, when my urethra closed several times
during the following two days, stopping any urine flow except when I inserted a
No 16 catheter. Doing this caused quite a deal of pain when I pushed the
catheter into my urethra, without the benefit of any anaesthetic.
During the past two years I have had to take great care when doing this because
the walls of my urethra are thin and could be easily damaged.
During the past two years I have had to take great care when doing this because the walls of my urethra are thin and could be easily damaged.
On 24/12/08 in desperation I phoned the two urologists with whom I have current referrals, only to be told they were closed until after Christmas. My local GP and the community nursing service both said they would not insert a catheter where a stricture existed so I arranged for a referral to Calvary Hospital Accident & Emergency and had a No 16 IDC inserted into my bladder.
The love, care and support I have received from both my wife, Suzanne, and my son, Matthew, have been of enormous benefit and comfort to me. Thank you to you both.
January 2009 to September 2009
Yes, the saga continues! At the urologist's appointment in January the IDC was removed and I was able to use a No 16 catheter every few days until my next appointment in hospital to have another urethral dilatation in an attempt to enlarge the urethral stricture.
At this time my PSA was tested again (1.5). My urologist said he would have liked the reading to be zero but I wasn't too disappointed at this level. However, it did mean that there were still cancer cells present.
Between February and August (my next urologist's appointment) I continued to self-catheterize every 2 or 3 days but the stricture was making this more and more difficult. I had to reduce the size of the catheter from a No 16 (about 6mm) to 10 (3mm) or 12 (4mm) by August. However, I felt I was coping, even though it seemed as if my waterworks were ruling my life most of the time.
Oh, I nearly forgot - in April I was on a short bush-walk on the Meehan Range (not a National Park) with my son and dog (Topsy). We were scrambling down a steep, loose gravel and rock fire trail when my right foot slipped from under me. I think my dog pulled me, rather than it being any fault whatsoever on my part!!
Anyway, my foot stopped against a rock but my body continued on past it. I heard a crack, squealed like a stuck pig and fell onto my back with my foot bent up under me. Matthew, who was following, said it looked horrible. When I regained my composure and got my foot out from under me I found I could still move my ankle, giving me some cause for optimism. I did not take off my boot. We thought about our situation and decided Matthew could walk over the ridge back to Mornington to get his car while I hobbled with Topsy along the 1km level fire trail to meet him at the end of Belbins Road. Not a pleasant trip (walk, stumble) but we got there eventually.
Back home and it was time to look at the damage. It did look horrible so Matthew took me to Calvary Hospital Accident and Emergency, where an x-ray confirmed what I had feared - the fibula was broken, but not displaced, near the lower end. This resulted in a polyurethane cast for eight weeks - no weight on the foot and an invalid once again. I must say Suzanne was wonderful during that time because I am not the ideal patient - rather an "impatient".
Now, in September, my right ankle is virtually back to normal. The swelling has reduced and I am anxious to get strength back into it to continue with my bush-walking plans. In late August as a trial Matthew and I walked from Cockle Creek to the coast and back as a test. A very enjoyable day out even though the weather was less than ideal.
Back to the Main Event
At the August urologist's appointment he said the catheter situation was not satisfactory and things would not improve. He had previously talked to me about an SPC inserted directly into the lower abdomen and into the bladder, thus bypassing the urethra entirely. It did not appeal to me but I had to acknowledge the reality of my situation so I agreed to have the procedure.
The operation was to have been done on 1/9/09 but it was not proceeded with due to the possibility that my bladder had adhered to my colon and the fact that my bladder is smaller now, only holding a maximum of about 200mls, rather than the 500mls or 600mls in the past.
The procedure was re-scheduled for 10/9/09 when the SPC was inserted during open surgery. I am now recuperating from another operation and wondering if I will eventually have a valve fitted at the outlet to control urine flow or if I will continue to use a leg bag for the foreseeable future or maybe even go back to self-catheterization.
Update on my PSA - the May reading was 3.6, as was also the August reading. I suppose I am feeling relaxed about these results. At least it has not gone up recently! Also, I haven't yet reached high levels such that I will need hormonal therapy. I imagine that time will eventually come, however.
For what it is worth I have been drinking 300mls of pomegranate juice each day since January 2009 in the belief that it might delay the progress of my cancer.
Update for December 2009
As can be seen from the PSA chart at the beginning of this account, my PSA has now risen to 4.3 - maybe not a dramatic increase, but nevertheless an increase. I am still taking 300mls of pomegranate juice daily; who knows if there is a beneficial effect or not as I do not have a "control group" against which to test myself. The urologist said, at the November appointment, that he expects the PSA level to rise but does not want to start me on hormonal therapy until the PSA reaches 10 or so. In the meantime, I try to get on with life and am not stressing about what my PSA may be at some time in the future.
A big test for me was how I was going to manage with a leg bag on my latest bushwalk with my son, Matthew. In the end I decided I could cope better with a self-made short tube with slide tap near the end to assist with urination now that my urethra is permanently blocked. My trip report is at Port Davey Track - December 2009 with a bit of detail as to how I coped on that 6-day walk.
Our next challenge will be a 10-day walk/climb from Cockle Creek to Precipitous Bluff (via New River Lagoon) and return during the 3rd and 4th weeks of January 2010. Matthew has already made this trip twice, on each occasion by sea kayak. His accounts of his trips are at Precipitous Bluff - Kayak and Walk - March 2005 and Precipitous Bluff - Kayak and Walk - January 2008.
I can't wait!
Update for February 2010
Well, we did the Precipitous Bluff trip from 8 Jan to 17 Jan 2010 (10 days with a rest day in the middle). See my report at Precipitous Bluff from Cockle Creek - January 2010, with some comments about my catheter situation. This was a tremendous personal physical challenge and, thanks to Matthew's patience and tolerance, it was a memorable trip.
Since returning I have had a complete physical checkup, with all sorts of blood tests, including PSA. For some unknown reason my PSA is now 3.4 (25/1/10). I don't think there is any point in my trying to analyse the possible reasons - that's just what it is at the moment. However, I suppose I must be cautiously optimistic. It will be interesting to get the urologist's reaction at my next appointment towards the end of February 2010.
My next challenge will be to start using my Giant XTC2 mountain bike that I have set up as a touring bike with a BOB Yak trailer. I have plans to ride down to Cockle Creek before Winter sets in but much training to do before that happens.
Update for October 2010
Winter came. Winter went. Bike riding has taken a bit of a back seat in my list of activities recently as we moved house in July after putting the Sandford house on the market. It took seven months to sell and we are now back in Lauderdale, in the same street that we left six years ago to move to Sandford. Déjà vu all over again as they say in the classics!! We can see our old house 100 metres along the road.
At the appointment in late February the urologist was fairly happy with my progress, particularly how I was coping with the suprapubic catheter (SPC). It is now just another part of my life and has become a daily routine to take care of it. Every four weeks the catheter is changed by a nurse at the local Community Health Centre.
My next appointment is in August 2010, by which time I will have had another PSA test.
In June Matthew and I walked the Overland Track again, this time from south to north and from Lake St Clair. My report of the trip is at Overland Track South to North - June 2010.
As we used the huts on the trip it was a bit easier for me to look after my catheter. It meant that I did not need to crouch in a tent to change the dressing each day, as I did on our earlier south-west trips.
My PSA test result in August (please see chart at the start of this account) was 4.9. A bit disappointing as the February result was 3.4. Apparently, I have a permanent urinary tract infection (UTI) that in normal circumstances would be treated with an appropriate antibiotic. It is caused by the foreign body (catheter) being fixed in my bladder. Unless I develop a fever or other serious symptoms there is apparently little benefit in having any treatment because I could develop a resistance to the antibiotic that would render it less effective when it is really needed. The reason for mentioning the UTI is that it is possible that it has an effect (unknown) on the PSA result. Up or down, who knows?
The next appointment with the urologist is in February 2011.
Watch this space for developments.
Update for February 2011
OK - first things first. PSA is now 7.7 and probably will continue to rise. When I received the results of this and other tests from Pathology my initial thoughts, when I opened the envelope in front of my wife and son, Matthew, were "Oh well, what did I really expect?" At least I am not experiencing any adverse physical consequences of still having prostate cancer. People put up with a lot worse, etc etc. [Updated chart is at the start of this account.]
Various comments I have read on the web indicate that having a UTI is likely to affect a PSA result (as mentioned above). The urologist, at the appointment today (17/2/11), has told me that it is very unlikely to have affected my result. However, he has agreed to put me on a course of antibiotics prior to having another PSA test in a few weeks time in order to put my mind at rest (or at least to eliminate the possibility of the link from my mind). I have decided to give up on the pomegranate juice - it was not a particularly pleasant drink anyway and, at $5.50 per litre every three days, was not a cheap drink. Apart from the disappointing PSA level I am coping reasonably well with the SPC - it's now just another part of my daily life and has not stopped me from doing everything I want to.
As far as bushwalking is concerned - a few weeks ago (mid-January 2011) Matthew and I walked from Waterfall Bay to Fortescue Bay. This was a longish day walk on a magical coastal walk - no bog to hinder us and a wonderful experience.
More recently - on Monday 14/2/11 in fact - we undertook a long day walk from Cockle Creek out to South-East Cape, the most southerly point in Australia that it is possible to walk to. An account is at Day Walk to South-East Cape, Tasmania - February 2011.
Plans for the near future and later include the Mount Anne Circuit, a visit to South-West Cape, another trip to Frenchmans Cap in the hope that we might get to see some views from the summit at last and others too numerous to think about. Also, I still have not ridden to Cockle Creek or around Tasmania in a single trip yet ......
Update to October 2011
After the course of antibiotics I had another PSA test on 31/3/11 - 7.5. I suppose this proves that the UTI is having a negligible effect on my PSA readings - it was worth finding out anyway.
Another memorable walk towards the end of February 2011 - to North-East Ridge near Mt Anne - a very tough walk on an overgrown track but worth every minute. Report of Matthew's and my walk is at Pandani Shelf via Sandfly Creek Track - February 2011.
Medically, things have not been too rosy during the past four months. As mentioned previously, my suprapubic catheter is changed every four weeks at the local Community Health Centre. There was a normal catheter change on 27/4/11 but at 2.30am on 12/5/11 I woke with the excruciating pain of needing to urinate but not being able to, as the catheter was blocked. In desperation I drove the 30-minutes trip to Calvary Accident and Emergency Department and eventually had the catheter changed by the on-duty doctor.
Things settled down for a while until, at 8am on 11/6/11 the same problem occurred again - needing to urinate but being unable to. Again I drove to Calvary and had the catheter changed. I was beginning to wonder just what was happening to me.
Within a week, at 12 noon on 18/6/11, the same problem arose again but this time I went along to the local doctors' surgery and was able to have the catheter changed there. On this occasion I asked if I could have the old catheter checked to see what might have been the cause of the blockage and was amazed to see the end of the catheter entirely blocked by a number of small stones of some sort. [Since then I have read about bladder stones but at that time I was ignorant of their existence.]
The next occasion (29/6/11) when I suspected that a blockage was occurring I arranged for an urgent catheter change at the Community Health Centre before my problem became serious. I brought the old catheter home and dissected it to find out what the cause might be. The following images show how large the stone was and that it almost completely blocked the end of the catheter.
By this time I began to believe that the stones were caused by the Calvid calcium supplement I had been taking on a daily basis to improve my bone density. I needed this because when I had had my bone density checked by x-ray about a year previously I was told that I had osteopenia (a precursor to osteoporosis). I stopped taking the Calvid.
Following these episodes I contacted the urologist who was handling my case and he booked me in for a day procedure of a bladder wash-out and possibly to insert a larger diameter catheter to help reduce the incidence of blockages. This occurred at the end of July 2011 when I was handed a plastic jar with the stones that had been extracted from my bladder. As I had mentioned to him just before the procedure that I was reluctant to have a larger catheter if it could be avoided he used the same size in the replacement catheter.
Life has now returned to "normal" - with no further blockages and back to four-weekly catheter changes. But, as I am no longer taking the Calvid (and my bone density had returned to normal) I wonder if my bone density might be suffering as a result. At present it is a small price to pay for the relative comfort of no bladder blockages.
My latest blood test for PSA (23/9/11) was 6.8. This was a bit of a surprise as I had prepared myself for a modest increase in the level (from 7.5 at last check) - to maybe 8 or 9 at least. So, what has caused the drop, I asked myself? The only sensible (?), logical (?) explanation is that my taking pomegranate capsules (2 x 500mg per day), combined with some exercise, has helped to keep my cancer under control. At the appointment with the Urologist on 3/10/11 he expressed some pleasure at the reduced result but offered no explanation. Next appointment in six months time.
During the early part of September Matthew and I undertook a 5-day walk on Maria Island (notes at Trip to Maria Island - September 2011 ).
Next venture might be my long-overdue and much anticipated bike trip down to Cockle Creek with Matthew over a six-day period at the end of October. In the meantime I must continue my bike riding to get some bike fitness back into my body. The only downside to bike riding is that the end of the catheter that's in my bladder causes some irritation and so there is blood in my urine for a day or so.
Update to April 2012
I must admit I was slightly disappointed that my PSA level was 7.4 at the latest blood test just prior to my appointment with the urologist in April 2012. However, on the bright side, it hadn't jumped up dramatically so no real cause for concern. Also, I have not experienced any more blocked catheter episodes and I am, therefore, convinced in my own mind that they were caused by my taking the calcium supplement, Calvid, and my body simply did not need the extra calcium.
Just to be on the safe side, I have been booked in for a June hospital appointment for another cystoscopy via the catheter site to make sure there are no stones lurking in my bladder. Apart from that, life goes on as "normal", meaning that I try to get on with things like bushwalking and bike riding whenever I can. In July I am scheduled to have another bone density test to check whether I am any closer to osteoporosis than I have been in the past.
The ride to Cockle Creek actually went ahead towards the end of October. It was a hell of a trip - report is at Ride to Cockle Creek. Also, one of my other "must-do" adventures was attempted, but not quite entirely a success - our walk out to South-West Cape ( Walk to South-West Cape ) in early March 2012. This has really only whetted our appetite for another trip in this remote area, mainly to do the South-West Circuit, including completing the walk out to the Cape as well. In the meantime I am planning more bike riding trips - the latest was a day ride to Dunalley ( Day Bike Ride to Dunalley ) with more to come as time permits. [I now do not understand how I found the time to hold down a full-time job with so much to do in retirement !!!]
Apart from the June 2012 appointment, I expect my next scheduled appointment with the urologist will be towards the end of the year, possibly early December. In the meantime, life goes on.
Update to June 2012
In two months my PSA has risen from 7.4 to 7.9. I realise I still have prostate cancer but that was a bit of a surprise. I am maintaining my dosage of pomegranate capsules each day - maybe they help and maybe they don't. Not having a control group makes it all a bit of a guessing game for me.
The cystoscopy and bladder wash-out that was performed on 19/6/12 resulted in there being a 1cm size bladder stone that, fortunately, was taken out. No idea why that grew but I suppose I can expect more in the future. On a positive note, the urologist is quite happy with my progress and does not consider it necessary for me to have another appointment until 12 months have elapsed, at which time I will have another bladder wash-out as a hospital day patient.
In the meantime, I am planning another extended solo cycling trip, taking everything with me, this time around the State in a clockwise direction. I am planning to leave in early November and expect the trip to take around a month to complete.
The next PSA blood test (and other blood tests) are due in early December 2012. It will be interesting to find out how things have changed.
Update to December 2012
Wow - that wasn't what I expected! PSA up from 7.9 to 10.7. Apart from that, I don't feel any different, which is some consolation at least. Apparently, when my PSA reaches about 15 I may need to commence hormonal therapy. From all accounts this will not be a particularly pleasant experience but I now have no reason to expect that that level will not be reached, maybe sooner than later.
The bike ride that I mentioned earlier actually eventuated but did not turn out exactly the way I had planned. Notes about the "trip" are at Bike Ride to Wayatinah.
In the meantime, life goes on as normal, with the next appointment with the urologist being the bladder wash-out in June 2013.
Update to June 2013
On 4/6/13 I had a hospital day procedure for a suprapubic cystoscopy and bladder wash-out. According to the urological surgeon there was some debris in the bladder that needed to be removed. During the past year I have had no problems with any blockages in my catheter so this was a precautionary operation rather than one designed to correct my situation.
My PSA has now reached 11.5. I know it won't go down but the surgeon told me that my cancer is not an aggressive one and it should be about two years before my PSA reaches a level of 20, which is the level he now wants to start hormonal therapy - not at 15 as I noted above. After that hormonal therapy should give me another three years. That's a target to beat if ever I saw one!!
Going back in time a bit - during March Matthew and I did a two-week bike riding tour of Flinders Island. This was my first visit to the Island but I hope it won't be my last. Notes about the trip are at Bicycle Tour of Flinders Island.
We now have plans to do a similar tour of King Island. Also, I still have plans to ride around the State, in an anti-clockwise direction, maybe towards the end of this year. Nothing definite yet though.
Update to December 2013
As shown in the chart at the beginning of this ramble, my PSA has now risen to 14.0 at the latest test in December. I know I am repeating myself, but on the bright side I still have no extra ill-effects of having cancer but I sometimes try to imagine what is happening to me, from the inside. Apparently, there is no point in having any scans at this stage as mutant cells will probably not show up.
My bike-riding has had to take a back seat during the past couple of months for three reasons:
1. During a walk up Mt Solitary with Matthew (when we both had minor falls) my right upper arm sustained an injury which has made it difficult to stretch the arm out (as when riding my bike). I probably should have had physiotherapy but I think I may have left it too late for that treatment to be effective now. Maybe time will be a great healer! My notes about this adventure are at Day Walk to Mt Solitary.
2. My wife had an unexpected stay in hospital for an operation that required her to be cared for at home after her release from hospital, so curtailing any thoughts about trips away that I might have had.
3. My son broke his arm while mountain-bike riding a rough bush trail on Boxing Day and he needed some TLC during a recovery period as he only has a live-in cat for company.
Update to March 2014
At the end of January 2014 I experienced a urine leakage around the site where the catheter enters my abdomen. In all probability my bladder was over-full and the urine had nowhere else to go. Anyway, at an urgent appointment with the urological surgeon he suggested a slightly larger diameter catheter might fix the problem. I now have a size 22 catheter instead of a size 20 (only a small increase in diameter but enough to stop any leakage). I wonder where this possible repeated increase in catheter size might eventually lead. Do they even make a size 50 catheter?
The next scheduled appointment will be my annual cystoscopy and bladder wash-out during June 2014, to get rid of any accumulated bladder stones.
Update to August 2014
During April 2014 Matthew and I spent 10 days on King Island. We wanted this to be a bike touring holiday but the logistics proved to be too difficult to arrange in the time we had allowed so this was a tour mainly using a vehicle. Trip notes are at Visit to King Island.
My annual cystoscopy and bladder wash-out took place in June, as scheduled, to remove any bladder stones that had formed. On this occasion there was some debris, rather than actual stones. The debris had not caused any problems for me.
The only disappointing development was that my PSA had risen to 16.3. I am not feeling any ill effects of having cancer and so far this is just a number. I know that eventually I will need to have hormone therapy but the longer I can delay the inevitable the happier I will be.
Matthew and I walked from Maydena to the Eagles Eyrie, at the top of Abbotts Lookout on Sunday 18/8/14, after reading about the neglected tourism venture in Hobart's Mercury newspaper. A very stiff walk on a broad, cleared route beneath the power lines. Notes are at Day Walk to Eagles Eyrie.
On 25/8/14 I decided to ride to Sorell and back (41kms) as I had not been riding very much. I think I may have over-stressed my body because, for two days after the ride, I experienced severe bladder spasms and blood in my urine during 25/8. I hope this is not a sign of my body falling apart. It would be a great pity if my bike-riding activities were to be at an end.
Our next walking adventures are a return visit to Maria Island and a few days visiting some of the old huts in the Central Highlands - an area that we have not visited very much to date.
Update to March 2015
In September 2014 Matthew and I visited Maria Island again ( Third Visit to Maria Island ). This was a very pleasant trip, where we explored the possible link from Robeys Farm across a direct route to the east coast.
Healthwise, my PSA reading had risen to 16.5 - not a dramatic increase from 16.3 six months previously - but a rise nonetheless.
On our Tasmanian Trail walk in December 2014 ( Walking the Tasmanian Trail - Part 1 ) I experienced severe bladder spasms while in my sleeping bag at night, probably from the extended walking exercise carrying a heavy pack. I did not really have an answer to this, apart from stopping walking.
In the days leading up to my regular four-weekly catheter change in January 2015 I experienced a much reduced urine flow from the Flip-Flo valve and suspected a build-up of deposits along the length of the catheter and in the valve itself. On checking the internet I "discovered" that silicone catheters have a larger internal diameter than the latex catheters I have been using (obviously having thinner walls). I decided to mention this to the urologist at my next appointment and he confirmed that they might help with urine flow. He did mention, however, that they are not as flexible as latex. I decided to give them a try.
A silicone catheter was used at the next catheter change appointment but, within two days, I had it changed to a latex catheter. The reason was that, not being as flexible, it protruded from my abdomen and caused urine leakage around the entry point. I think I must drink more water in order to keep my bladder flushed out and so help to prevent the build-up of deposits. So far it is helping.
Apart from these problems I still manage to lead a reasonably normal life, although I have not ridden my bike for a few months. No excuses but I will just have to start riding again.
Update to July 2015
As charted at the beginning of this saga, my PSA has now risen to 18.8 (as at 1 June 2015). I do not have any ill effects of my cancer as yet but I am sure they will arise as time goes by.
When the bladder washout and suprapubic cystoscopy were done in June 2015 there were some bladder stones but, fortunately, they had not caused me any problems and I had not been aware that they were in my bladder.
During July (at the beginning of the Tour de France actually) I decided to use my exercise bike during all the ad breaks in the live broadcast over the three weeks of the race. I managed to keep a pretty good record of doing it and have continued to use the bike during just about every evening since then. At the same time I have been drinking my two litres of water. I suppose it would be better spread out over the whole day but this is working for me at the present time.
I have tentative plans to try a round Tasmania bike trip, starting during November 2015. This exercise bike routine might help, leading up to more actual bike riding on the local roads as the weather improves. On this occasion I plan to start on an anti-clockwise trip, so avoiding the initial days of continuous uphill slog that I encountered on my previous attempt in October 2012 ( Solo Bike Ride to Wayatinah ).
My next appointment with the urological surgeon is planned for June 2016, when my now annual bladder washout and cystoscopy take place. If my PSA has risen to about 20 by then he expects to start me on hormone therapy. I'm not looking forward to it.
Update to July 2016
This time my planned bike ride around Tasmania did actually occur. Details are at Tony's Tour de Tasmania.
In April 2016 I had two hernias repaired, following the diagnosis of pain in my left groin. Prior to this operation a blood test showed that my PSA had risen to 19.6. Once again, not a dramatic increase but still rising.
I had another PSA test on 27/5/16 that was at 21.0. This test was done prior to having an annual bladder washout and cystoscopy in early June 2016. After the procedure the urological surgeon suggested that I should have a Prostate Specific Membrane Antigen (PSMA) PET scan. This new scan is apparently capable of detecting lower levels of cancer that has spread than more traditional scans. The drawback was that the cost of the scan, $800, would not be covered by Medicare and, therefore, also not by my health benefits fund. I considered it to be too important not to go ahead with the scan and agreed to it. The radioactive source for the scan was Gallium-68 (Ga68).
The result was that, while there was some cancer remaining in the bed of the now-absent prostate gland and in a lymph node, there was no evidence of cancer having spread to my bones. There was, however, "physiological tracer activity" in the lacrimal and salivary glands, larynx, liver, spleen, kidneys and small bowel. [The oncologist I saw later put my mind at rest as I thought the cancer had spread to all those other areas, whereas this description merely stated that the radioactive source had been detected in those areas.]
I asked whether it would be possible to have surgery to remove the offending lymph node and whether immunotherapy might be appropriate to treat my cancer.
The surgeon said that there might be a risk of unacceptable complications with surgery and that lymph nodes are junctions in the whole lymphatic system. He offered to provide a referral to the Melbourne-based surgeon who had performed my radical prostatectomy and who could provide more definitive advice if I wished to follow that course of action. Also, while he stated that he was not aware of any trials or treatment in Australia by immunotherapy for prostate cancer he would provide a referral to a Hobart-based oncologist for a discussion about possibilities in that area.
I have a further appointment with the urological surgeon in January 2017.
In the meantime, I am thinking about a possible bike tour of King Island, either with or without Matthew, depending on his leave situation at the end of 2016.
Update to September 2016
The appointments to review my cancer situation took place at the end of August and in the first week of September. The results were that immunotherapy is not yet available in Australia and the oncologist was not aware of any clinical trials specifically for that form of treatment. The surgeon I saw in Melbourne confirmed that the risks with any further surgery in the area of the prostate bed included the possible loss of my bladder, with the result that I would need a permanent external bag for urine collection and disposal. Obviously, from my point of view, an unacceptable risk, considering that I am able to cope reasonably well with the suprapubic catheter and flip-flo valve to control my urine flow.
He did mention, however, that, given my level of fitness, it might be appropriate to delay starting me on hormone therapy until my PSA reached about 50 or when my PSA level doubled in three or six months. That was a pleasant surprise but reinforced my understanding of current thinking that there is no fixed level of PSA at which to commence hormone therapy.
When I had my PSA checked on 8/9/16 it had risen to 25, up from 21 on 27/5/16. No adverse effects on me at this stage, so life continues as before.
Update to January 2017
An unexpected complication occurred on 30/11/16 while Matthew and I were riding on the Tasmanian Trail. We had arrived in New Norfolk and booked in to the Junction Motel, near the lower roundabout.
When I was preparing to have my shower at the motel the catheter came out of my body. In a state of shock I quickly pushed the catheter back through the hole in my abdomen into my bladder and securely taped it in position. Normally, the catheter is held inside my bladder by a small balloon that is inflated with 10cc of sterile water at a four-weekly catheter change.
I told Matthew of my predicament so we walked gingerly (at least I did) to the New Norfolk Hospital/Community Health Centre to find a nurse who would be able to do an urgent catheter change for me, using the spare catheter I had with me.
The staff could not have been more helpful, changed the catheter and provided me with some replacement spares in case of another emergency. It was found that the balloon at the end of the catheter had burst and the catheter was not held inside me as a result. I was advised it would be preferable for me not to exert myself too much while riding my bike!
As we left the Community Centre I wondered what would happen if I had another emergency while travelling on Jefferys Track or other bush tracks to Dover.
The blood tests I had on 30/12/16 showed that my PSA has now risen to 30. Obviously, this is going to continue to head upwards, but at the appointment with the urological surgeon on 12/1/17 he seemed to be in no particular hurry to start me on hormone therapy.
I intend to keep on pursuing my bike rides - next on the list is a ride with Matthew, my son, to Smithton via Queenstown and the Western Explorer at the end of this month or early February 2017.
Update to April 2017
Matthew and I rode from Lauderdale to Smithton in the two weeks starting from 31/1/17. (Notes are at Ride from Lauderdale to Smithton.) While riding along the Lyell Highway between Derwent Bridge and Queenstown I experienced a period of extreme stress when my catheter became blocked. This occurred as we were descending Mt Arrowsmith in rain, with nowhere sensible to stop. By the time we reached the information shelter at Franklin River I was barely coherent. Matthew helped me by getting the spare catheter and associated equipment out of my pannier bag. When I was able to release the urine by cutting the tube that held the internal balloon in place in my bladder and withdrawing the old catheter, the feeling of relief was instant.
I believe the reason this situation occurred was because it has not been possible for me to drink sufficient water while riding long distances to adequately flush out my bladder. It is a lesson I need to learn on future rides, otherwise I expect the same situation will occur again.
My next appointment with the urological surgeon is due in June 2017, when I expect him to perform my annual bladder washout to remove any accumulated bladder stones and to check my bladder for any other potential problems. At that appointment he might suggest it is time for me to start hormonal therapy. I suppose it will need to happen sometime.
Update to June 2017
Imagine my surprise when I received the results of my June 2017 PSA test! The reading had gone from 30 in December 2016 to 26 on 2/6/17. The urological surgeon could offer no explanation when I saw him at the bladder washout procedure, except to say it was better than having risen. So that made me feel happy.
There were bladder stones that he was able to remove successfully. The next appointment is for June 2018, unless there are unexpected adverse developments in the meantime.
Update to September 2017
At the end of June 2017 Matthew suggested we should take our bikes, complete with all camping gear, and ride the Munda Biddi Trail, a 1,000kms long off-road MTB track that commenced east of Perth, WA at Mundaring and ended in Albany.
This sounded like an amazing adventure and we prepared to leave in the first week of August 2017. In the intervening time I obtained supplies of Vesicare (with alternatives of Oxytrol patches and Ditropan tablets) to help prevent bladder spasms that had been a problem for me on previous multi-day rides. The Vesicare worked for me and I did not need either of the other drugs. I took with me sufficient spares of catheters and Flip-Flo valves to enable me to have catheters replaced at more frequent intervals than the normal four weeks. My thinking was that, if I had the catheter changed each two weeks, there would not be such a build-up of deposits in the catheter that would result in a blockage. I also arranged to have a normal catheter change the day before we were due to fly to Perth.
During our ride I had a catheter change at Collie Hospital after two weeks and another at Albany during a visit to a local doctor after a further two weeks. At this second catheter change a rather large stone was found to be almost completely blocking the drainage hole at the inner end of the catheter. It was changed not a moment too soon.
Each day of our stay in Western Australia I cleaned the overnight drainage bag using bleach tablets dissolved in water and flushed the fluid through the bag. This ensured that the bag remained relatively clean and free from deposits the entire time we were away. I also made sure I cleaned the catheter entry site in my abdomen and changed the dressing daily.
I will continue to post updates to this account as and when they occur. If you have made it through this far, congratulations on your patience with my commentary.
It is my wish that the above might assist other men when considering their options, or at least make people better informed about some of the possible complications that may arise on their journey.
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