PROSTATE CANCER ACCOUNT

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 not a little bit of luck (not necessarily in that order). Anyway, for what it's worth - here goes!

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 knobly. 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 at this time 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!

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.

External beam radiotherapy (at the time a high risk of collateral damage to adjacent organs and relatively imprecise targetting 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 Peter MacCallum Cancer Centre in Melbourne for a further consultation as their reputation for treating prostate cancer was highly regarded.

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 at 7.15 am on 11/5/04 after fasting from 7 pm the previous evening (compulsory from midnight) and evening enema with Microlax.

After initial formalities, I changed into a gown and was wheeled on a trolley to the operating theatre where I had a spinal block administered to anaesthetize me from the waist down.

An 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.

A large 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.

Following this procedure a CT scan was taken to make sure that the needles were placed in the correct positions.

To the ward to thaw out via the Recovery Room where I found three other patients. There 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 pain 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.

At about 3.45 pm 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.

The actual 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.

After being 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 small amount.

My only 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 8 am on Tuesday until about 4 pm 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 bags.

Breakfast on 12/5/04 consisted of two slices of toast with jam, fruit juice and a cup of coffee.

Twice 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.

At about 2.45 pm I was taken for my second 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 between 10 seconds and 1 minute. I felt more relaxed this time, with no back pain.

Dinner was 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.

Once again, 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 3 pm to arrive.

At 3 pm I was wheeled down to the radiation theatre for the third and final treatment session and removal of the needles and catheter.

Along with 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.

Once back in the ward I sat gingerly 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 14/5/04 with 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.

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. 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.

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.

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 Melbourne at the Cabrini Medical Centre. Apparently, the surgeon considers he was able to cut out all the cancerous tissue, including lymph nodes, but of course there could still be microscopic cancer cells present that were not detected and therefore not removed. There was no evidence the cancer had spread outside the prostate capsule.

I returned to Tasmania on 6/12/08 with my son, who had travelled over to help me, with a No 20 in-dwelling catheter. This remained in place until 22/12/08 when it was removed following a successful cystogram under x-ray examination that confirmed there were no leaks in my repaired urethra.

Problems 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.

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 catheter is still in place as at this date (3/1/09).

The situation will be reviewed by my Hobart urologist on 13/1/09 to determine whether I need to have the IDC for a longer period of time, maybe a suprapubic catheter (SPC) through my abdomen wall or, preferably, revert to intermittent self-catheterization.

At some time in the future I may need to have a urethroplasty operation in an attempt to repair the stricture. That remains to be seen.

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.

I will 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.

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.

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.