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Terry Herbert lived in Victoria, Australia. He was 54 when he was diagnosed in August, 1996. His initial PSA was 7.20 ng/ml, his Gleason Score was 7a, and he was staged T2b. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

Like most people, the diagnosis sent me and my wife into a bit of a spin, especially as the local urologist didn't even mention that there was more than one option for treatment. He had me booked in for a Radical Prostatectomy before we knew what was going on. And he sent me for tests which, from what I have now learned, were absolutely unnecessary. My already low opinion of the medical profession sank another couple of degrees.

Let me just qualify that - I don't think that most doctors, as individuals, are bad or incompetent people. I just think that the paradigm in which they operate precludes them from dealing with their patients as people, not a collection of symptoms. It also makes them extremely conservative and closed to anything new.

When I was diagnosed, I was just about to set off for a trip to Australia and Papua New Guinea, returning to South Africa through London, so I had plenty of time to read on those long flights. By the time I got back home I was pretty well convinced that RP was not for me and although it wasn't the worst option - chemotherapy takes that prize in my book - there were better ones.

One of the books I read was on the Bristol Centre in UK which dealt with matters such as diet, meditation, visualisation, faith and so on. Much of this tied in with the material which an old colleague had given me and it made a lot of sense to me and to my wife. So we made the decision to start to change our diet and our habits - not with a huge lurch, but steadily. The main issues identified at that stage [apart from stopping smoking, which we had done some years previously] were basically those listed below, although I have expanded the original list to include other aspects which we added as we gathered more information.

It represents my current regimen:

  • reduce intake of meat, specifically red meat, ideally becoming vegetarians
  • reduce intake of dairy products and fats
  • cut down or out irritants such as coffee and spirits
  • pay more attention to dietary requirements – more fruit, fresh vegetables etc
  • take vitamin and mineral supplements – Vitamin C being a major item; take anti-oxidants
  • increase exercise levels [I walk my two dogs over the mountains behind us for a minimum of an hour a day and usually longer] and to lose weight [I lost about 15 kg, but I needed to]
  • meditate and "weed the spiritual path"
  • reduce stress
  • create a visualisation of the disease and its effects
  • take some prostate-specific herbs, such as Essiac [I stopped taking Essiac after two or three years when I established that the original formula and protocols for which Renee Caisse claimed success were completely different from what was being sold as Essiac]

Simplistically, my whole approach is based on the premise that in normal circumstances, the body's immune system and other mechanisms will deal adequately with cancer. The diagnosis of the cancer is an indicator that the system has failed and it is therefore important to create an environment where the system can get back to do the work it is designed for.

I have found the material about visualisation, which recurs in so much material dealing with cancer therapies, interesting. In my case, I relate my body and my cancer to an overgrown garden - probably because the house we are now in had such a garden when we bought it three years ago. It takes a lot of hard work to rectify an overgrown garden - and a lot of time. Persistence is the name of the game.

That is how I see my onslaught on my disease - there is no doubt that the spontaneous remission of some cancers can take place in a very short time.There is a good deal of anecdotal material which tells of such regressions occurring overnight, and these are supported by a more limited number of medical testimonies. But because prostate cancer is a slow growing tumour, I do not expect it to retreat any quicker than it grew. It is difficult to find any reported cases of remission of prostate cancer but, as I said to a urologist in Houston, this is because the average time from diagnosis to removal, in the U.S. is six weeks - hardly time for the remission to take place!! He wasn't really amused. Although I had been prejudiced against an RP with my early reading, I only arrived at the final conclusion that I would pursue this alternative path over a period of some months. Initially my research was on the basic information on the disease and the treatments available. The "hard copy" statistics I found at first seemed to support the "golden standard" of RP surgery.

But once I got onto the Internet and started digging up more up-to-date information, there were some indications that these figures might not be as accurate as they pretended to be. It soon became apparent that they were badly skewed to support the medical contention that RP was really the only option. In fact the more I read, the more I came to the conclusion that there was very little difference in survival rates [which I think are much more positive than mortality rates!] between the various treatments, doing nothing or not having cancer! In fact I found one paper which gave better survival rates over a ten-year period for men diagnosed with cancer than for the general population of men the same age. That seemed fairly encouraging, especially as survival rates were of the order of 80% - 90%. I even visited, in this exploration, sites which gave an opposing view of alternative medicine. I felt I had to look at the other point of view - anyone interested can visit the Quackwatch website (to be found here) which is run by a retired doctor, and form their own opinion as to the value of the information there.

I must say that it has not been easy following the path we have chosen.

There is very little support for (Watchful Waiting/Positive Onslaught While Watching) from friends and relatives and virtually none from the medical profession, although I eventually found an oncologist who said he thought it might not be a bad idea, and a holistic doctor who helped in the early stages. But even subscribers to support and chat sites (on the Internet) still have some reservations and disagree with what I am doing. So it is a lonely path and, naturally, I ask myself often if it is wise to continue, especially when the odd ache or pain strikes - things which one would normally take in one's stride as merely a function of growing a little older, or having exerted oneself too much, loom into my thoughts as "Is this a spread?"

But apart from that, mentally and physically I am better than I have been for years and I enjoy each day more than ever before. A guest on an Oprah Winfrey show I saw years ago said that it was an unfortunate aspect of life that everyone needed a life-threatening experience to really appreciate how good life is. I agree with that!! Prayer and faith in the Supreme Being and your body's ability to cure itself are enormously potent tools, I believe. [About ten years after this was written I was asked to summarise why I had not chosen to have immediate aggressive and invasive therapy. My response is here.]

UPDATED

February 2001

It is over four years since I was diagnosed in August 1996. I am glad that I made my decision not to have conventional treatment. If I were to present for an examination today, I would not be diagnosed as having prostate cancer. I say this because my PSA has stabilised at around 5.00 ng/ml, which I regard as normal for a man of my age with BHP. My free PSA has been consistently at about 30% in recent tests - up from 20% at the first occasion when this test became available. My last DRE was normal - apart from the BHP.

I cannot claim to be cured because there is no definition of cure for the path I have taken and I am not sure that any doctor would even say that I was in remission. But I am in better health than I was when I was diagnosed and there are no signs of progression of the disease. That's good enough for me. My garden is also looking much better and I have just about eliminated the weeds from the lawn - not by weed-killer, but by getting the grass so healthy it will not allow the weeds to grow.

I have learned a good deal in my journey so far. I am more convinced than ever that the majority of men (especially in the United States) who are treated for prostate cancer by radical prostatectomy and radiation do not benefit from their treatment in the long term. I am not alone in this view. There are many organisations and medical people who also feel that way. There are some indications that there is a movement away from treatment which is too aggressive. One of the leading institutions in the US has defined what they call "insignificant" tumours and suggested that they be watched for further development rather than treated immediately. The definition is:

  • Nonpalpable
  • Stage T1c
  • Percent free PSA 15 or greater
  • Gleason less than 7
  • Organ confined
  • Less than three needle cores involved with none greater than 50% tumor.

Another very important issue which is not properly understood by many medical people is the inaccuracy of the PSA test. Whilst this remains the best indicator of anything going wrong with the prostate, care should be taken in accepting a single PSA reading as the results can change significantly in a short time for no apparent reason. I undertook a small experiment in July of 2000 which can be viewed here.

In this experiment I tested my blood for 28 consecutive days whilst trying to keep the PSA levels stable. The lowest reading was 4.50 and the highest 6.00 and they were two days apart. That was an increase of 33%. Three days later the reading had fallen back to 4.60, a reduction of 25%.

There is no doubt in my mind that the number of men who need to take immediate action is very small. This does not mean that such men should do nothing, but it does mean that they have time to research their options and to decide what is best for them.

UPDATED

September 2001

Current Age = 59; Current PSA = 5.74.

Current Treatment = WW. Now it's five years down the line and all seems still to be going well. Although I was confident of this, my darling wife, with her Master's Degree in Worry and Concern asked me to get a checkup with a specialist.

So I went to see a leading urologist who very sportingly agreed to examine me without the benefit of seeing my medical history. After completing the examination, including the DRE (Digital Rectal Examination), he said that he could feel nothing, apart from the BPH (Benign Prostatic Hyperplasia) which was diagnosed 10 years ago.

He suggested I get a PSA test, so I gave him my latest one which I had done a fortnight before the consultation. It was 5.74 ng/ml and had a free PSA component of 48%. The total PSA was within my "normal" range and the free PSA was excellent. He was amazed to then discover that I had been diagnosed five years earlier and after discussing what I had been doing since my diagnosis, his only comment was that I should keep on doing what I was doing.

I had intended to do that anyway, but it was nice to achieve SILVER status on this site and get official confirmation at the same time!!

UPDATED

November 2002

There is not much to say in this update. I had my annual checkup in September. My total PSA came in at 5.88 ng/ml almost the same as it was last year and my free PSA was 38%, down a little from last year, but still in the high range.

So, I'll carry on doing what I'm doing - seems to be working so far.

UPDATED

October 2003

Not much to report. Annual DRE still negative. PSA up a tad to 6.25 ng/ml with free PSA stable at 38%. I had a business trip to the Toronto in September and was very tempted to go and see Dr Fred Lee with his colour doppler diagnostics. I decided against it in the end, mainly on the basis of cost, which would have been very high for me. I also felt that it was unlikely that he would be able to tell me anything without another biopsy - and I do not intend to have another. So, I'll just carry on doing what I'm doing.

This year I have set up a Watchful Waiting/Conservative Managment site. It is still very much in the course of construction, but there is quite a bit of interesting material on the site. You'll find it at Prostate Cancer Watchful Waiting . If you do call on the site, I would be very interested to have any comments, especially if you are researching this optional approach.

UPDATED

June 2004

The BPH (Benign Prostate Hyperplasia) with which I was diagnosed in 1992 started playing up last year. I think it was because I had become a little slack on all the issues I think are important in maintaining good health. We had been travelling a good deal, including 5 weeks and 5,000 miles in the US and I had been neglecting my exercises and my better eating habits. As a result I had put on a bit of weight and was not as fit as I had been. I think this often goes with the territory if you are on Watchful Waiting/ Conservative Management - as the years go by with no signs of progression, you start to revert to the old bad habits you learned in the 50+ years prior to diagnosis.

Anyway, be that as it may, I was having many problems, mainly with nocturia and finally swallowed my pride and went to see my uro, who suggested we try Flomax. That didn't do much good and although I went back to my previous regimen, lost weight, ate properly, exercised etc, it seemed that the BPH had got ahead of the curve, because it didn't respond as it had done before. My PSA also showed an increase, going up to 8.55 ng/ml, although there was still a free PSA of 42%. This all created a bit of a quandary, as we are off to the island of St Helena next month (five days each way by ship and seven days on the island) and the way things were going I was concerned I might have a serious issue that might be difficult to deal with, given the limited facilities available.

The uro and I kicked around several ideas before he thought to do an ultra-sound scan of the prostate. It was pretty big - he estimated about 180 gm - but this had not been apparent because the growth was upward into the bladder and thus could not be felt by the DREs I had been having. So I bit the bullet and agreed to a TURP (Transurethral Resection of the Prostate), which I had last Thursday. Although it is early days, everything seems to be going well and, as most men who have had this procedure will tell you, it is pretty cool to have a stream like a young man again!

One of the reasons that I opted for the TURP rather than some form of ADT (Androgen Deprivation Therapy), which would have shrunk the gland, was that it gave me the opportunity to get a good sample of material from the gland to see what had been happening these past eight years since diagnosis. My uro also took four large needle biopsies of the peripheral zone while he was at it. I had the histology report faxed to me yesterday and although I will be seeking some expansion on the information given, basically it states that the Gleason Scores on the tissue examined is 3+3=6 (which was my original diagnosis) and there is about 20% of the material from the TURP that contains evidence of invasive primary adenocarcinoma.

It seems to me that this shows evidence of some growth over the years, since the volume is probably higher now than it was, but no evidence of increasing aggressiveness. If that is the case, then I'll continue what I have been doing, accepting that although my regimen may not have been successful in causing the tumour to regress, it may well have slowed it down.

UPDATED

January 2005

Well, I may have to change my plan after all!

I say that because my PSA results post TURP are disappointing. The first was in September. I had hoped that it would be significantly lower than the June result, but it came in almost the same at 7.54 ng/ml with a free PSA of 41%. Not too bad, but not too good. My uro said that there could still be an effect from the procedure.

The next PSA test was scheduled for three months later and I had that in early January 2005. That did give me a shock because it had almost doubled to 14.72 ng/ml. The free PSA figure had also dropped markedly, to 28%, the lowest ratio for some years and only a little above the January 2000 number. I always advise people to check any unusual PSA number by having another test, so I did that a week later. The second test came in slightly lower than the first at 12.99 ng/ml with a free PSA of 34%, the equivalent of my long term average number.

This has left me in something of a quandry. I intend to take a course of antibiotics first, on the basis that there may be some infection. After all, there were small bits of prostate gland coming out with my urine for some months after the TURP. One of those lodged in the gland may be causing a problem. If, after that there is another significant increase, then I will have to assume that the disease has metastasised and take appropriate action. Just what that will be will depend on the advice I get over the next month or two.

UPDATED

April 2005

I took the antibiotic but it hasn't prodcued the desired result. My latest PSA, taken on 19 April was 17.44 ng/ml fPSA 4.93 ng/ml 28%.

So, what does this all mean? Darned if I know if it is an indication of failure of primary treatment, which sees me with metastasis on the way, or if it is still a lingering infection. I have had an odd feeling, not pain so much as pressure, in my groin since the op which I have mentioned to the surgeon and which he carefully puts in his notes, but doesn't comment on. Could it be that or is that wishful thinking?

The points that puzzle me are:

  1. My understanding of increases in PSA associated with metastasis is that they rise progressively: as a corollary to that variations - rises and falls - in PSA values are often associated with infection or disease. In my case an initial doubling time of three months from June to September might reasonably predict a PSA of about 30 ng/ml in April, yet the actual result is 17.44 ng/ml - an increase of 18%. Does this mean that it is more or less likely that the increase is due to underlying infection than metastasis?
  2. Although most studies of fPSA relate to total PSA levels under 10 ng/ml, there are some European studies that indicate that fPSA levels are still valid up to 20 ng/ml. There has been considerable fluctuation in the fPSA ratio over the past nine months and in fact the total fPSA has increased from 3.07 ng/ml in September to 4.93 ng/ml in April. Does this mean anything? Normally fPSA ratios at the levels recorded are indicative of non-tumour expression.

I'll be talking this all over with the oncologist I consulted eight years ago, who went into research and is now back in practice, if he and I can find time to get together! In a typical example of Murphy's Law operating, this little potential crises of mine has arisen at a time when we have the house on the market prior to our re-location to Australia and when I have no less than three business (and pleasure!) trips planned which will see us at home for only six weeks in the next four months - and during 10 days of those six weeks we'll have overseas guests staying with us. Not that I'm complaining, mind you. Carpe Diem is still something I believe in.

UPDATED

June 2005

The May PSA was up again, a little, to 20.44 ng/ml, but then so was the fPSA - to 29%! I went along to the oncologist who suggested we start with a bone scan, which would be testing the worst case scenario first. I had the scan a couple of days ago - great improvemnt in comfort factor since the first one in 1996, but taking even longer. the good news was - no change since the last scan, no sign of metastasis.

The oncologist feels the nex step should be a CAT scan, even though these are not great at identifying tumours. I'll do that, with his approval, when I get back from the Australian trip at the end of July.

UPDATED

August 2005

Well, I'm back from Australia. We bought a nice townhouse there and have sold our house here in South Africa and all being well, we should be on our way in mid-October. Of course there is a tremendous amount to do - moving house is never easy, but the difficulties multiply when you're moving countries as well.

In all the rush and bustle I only got my PSA test done last week and regrettably it is up again, to 24.9 ng/ml, still with a free PSA of 6.47 ng/ml or 26%. Clearly action is required now and I will be seeing my oncologist as soon as I can get an appointment. I am also seeking advice from all my cyberpals on the Internet, but unless anyone can show me why it would be foolish to do so, I intend embarking on a 'DES Lite' regimen.

DES is diethylstilbestrol, a form of oestrogen and there have been many successful reports, including formal studies, of its success in dealing with prostate cancer over the years. It is no longer prescribed in most countries. This is said to be because of a serious side effect in some of the men in the studies who suffered from thrombo-emoloc side effects.

There were indeed some such side effects reported, however that was on a dose higher than I would take, since the low dose treatment appears to be equally effective. Cynics believe that the main reason that this treatment was stopped was because it is so cheap, especially compared with other ADT (Androgen Deprivation Therapy) drugs.

I'll keep you'all posted if and when there is anything to report.

UPDATED

December 2005

We are settled here in Australia now and I finally saw a urologist on Monday and an oncologist on Tuesday after getting a PSA test - result 26.5 ng/ml virtually the same as in August. Unfortunately the oncologist is a radiation oncologist, not a medical oncologist. Both recommend Zoladex on its own to reduce gland volume followed by 3D conformal External Beam Radiation. The urologist suggesting HDR Brachytherapy in addition. Both recommend then a three year course of Zoladex. Neither would consider DES or ADT3 as an option saying that there was insufficient evidence to support such an approach.

The crux of the matter is simply this, to summarise the oncologist's advice:

If I was ten years older (73) he would agree with my view that we could keep an eye on things for signs of progression i.e. only start treatment when symptoms manifested themselves or when the annual examination - DRE, MRI and bone scan demonstrated clear metastases. On this basis he felt that the disease could probably be managed for at least another ten years which would se me through to the current standard life expectancy. But because I am 'so young' at 63 he wouldn't like to consider this option.

Now this opens up all sorts of issues, not least being the fact that throughout my life, none of the predictions made by the medical profession about my various injuries and diseases has proved to be accurate. The latest, and most serious, in this long line was when I was diagnosed in 1996. The diagnosing urologist indicated a life expectancy of about five years; one US specialist I consulted (amongst many others) told me that I was toying with my life if I didn't have an immediate RP and went so far as to call my brother, whom he knew, to tell him that without surgery I would not last three years - maybe five years at the most.

So, why should I now believe the latest predictions for the outcome of this notoriously unpredictable disease? If the disease might be managed for 10 years from manifestation of symptoms or confirmation of metastasis, why could it not be managed for 15 or 20 years from now? And in any event will I be around in 10, 15 or 20 year's time? When I first arrived in Australia in 1987 and had a medical for life assurance the view was that because I had various tropical diseases - bilharzia, malaria, hepatitis plus a couple of others - I was a 'non-standard' life and I would probably fall short of standard life expectancy by about ten years. Hey - that makes my expiration date about ten years from now!!

As I've said before over the years, I'm not recommending my line of thought and action to anyone else. Merely expressing my somewhat contrarian views. I'm going to have a PSA in three months and then if it is still up or rising significantly I am going to speak to a medical oncologist about the possibility of hormone treatment.

UPDATED

January 2006

Just a slight change of focus!! I have been developing some breathing problems over the past few months. Nothing too drastic, or so I thought. A bit of shortness of breath when walking with the dogs up hills and, more annoyingly, waking up in the early hours of the night feeling I was choking. I put the former down to a loss of fitness during our move and the latter to the various stresses of the move.

However, things were not getting any better and I finally went around to see the GP who said I had an irregular heartbeat and prescribed a series of heart tests, scheduled for three weeks time. That night I had a dreaful time and really thought my last days might have come as I battled for breath. Back to the GP, he ordered a chest X-ray and an ECG and prescribed an asthma "puffer" to help me breathe.

By chance an old pal called later in the day. He was our GP when we were first married 35 plus years ago and recently retired. He was alarmed at my voice and asked me what was going on. I told him and his immediate reaction was that my wife should get me around to the ER at the local hospital as soon as possible. I thought it was an over-reaction, but did as I was told. The staff at the ER didn't take it lightly, admitting me, putting me on oxygen and getting down to the first in a long series of tests. Ten days later I concluded all the tests and bed rest and was diagnosed with atrial fibrillation and idiopathic cardiomyopathy, moderate to severe. To put that in lay terms, the top of my heart is beating in an irregular fashion, causing a strain on the rest of the apparatus and there is damage (cause unknown) to my left ventricle, leaving me with an enlarged heart that doesn't pump too well.

I'm told the outlook is pretty good as long as maintain the medical regimen that has been set, which of course I will do, but I must say it came as a bit of a surprise, since I didn't see myself as a candidate for heart failure!

As soon as I get this dealt with I'll be back to my PCa related issues, but first things first!

UPDATED

March 2006

With tooth and heart problems now under control, I finally got back to the PCa issue and had a PSA test last week. I was really curious to see how it would turn out because of what an old 'cyberpal' of mine, Al, told me a month or two back. He recounted how his PSA had started rising. like me, he was not convinced that the rise was due to his diagnosed tumour and, most coincidentally of all, he had a periodontal disease.

Now I haven't mentioned my tooth problem before this, but a most peculiar set of circumstances arose soon after we got to Australia. My incisors and three of my molars were found to be rotten to the core. This was a shock to me because I had seen my dentist and his hygienist regularly in South Africa and in fact had a full inspection the week before we left. And yet a mere eight weeks later I had this problem. I saw an escalating series of dentists, each more specialised, but none of them could tell me how this damage had occurred - all were in agreement that it was not possible for it to have happened in eight weeks, despite the evidence to the contrary. Truly, medical paradigms are hard to overcome. Nothing could be done with the Christmas holidays fast approaching - Australia closes down from about the middle of December until the middle of January - but we agreed that the teeth would have to go early in January. Of course I was in hospital then with my heart failure, but I had the molars out as soon as I could after my discharge.

Why this long and apparently irrelevant story? Well, I am not sure that it is irrelevant because, with the teeth out, my PSA has dropped dramatically from 26.8 ng/ml in December last year to 17.4 ng/ml - almost 10 ng/ml. And this is virtually what happened to Al, whose PSA was not quite as high as mine, but which halved after his tooth extractions. Maybe a coincidence; maybe the antibiotics that we each had to take for the dental work; maybe the effect of the medication for my heart condition; whatever the reason, I'll take a falling PSA against a rising PSA any time.

I have a new GP who is happy with my decision to not pursue conventional treatment at this time. He and I wrote a Health Plan this morning and the line regarding PCa says: "To keep living and let another disease be our worry." That's not quite what I suggested. I said I wanted to keep living until I died of something else, but I guess that was a bit too direct for the doctor!

In my tenth year, and earning Gold status on this site. I reckon I could meet the first of my old goals - to live ten years after diagnosis - in August this year.

UPDATED

June 2006

Time for another PSA test.

As I said before, I was hoping for another fall, with my cardiomyopathy and periodontal problems apparently under control. But it was not to be. The number that came in was 24.3 ng/ml - about the same as it was in July last year.

Regrettably, although a Free PSA test was ordered, the lab did not do it. My new MD didn't notice and, as he freely admits that he knows nothing about fPSA, he didn't agree to getting another test done just yet, so I guess I will have to wait until August or September.

Until then, I'll carry on carrying on.

UPDATED

August 2006

Latest test is a bit disappointing, coming in at 27.4, just a tad above December last year. Once again, although a free PSA was ordered, it wasn't delivered. This time I queried it with the lab who initially said they didn't do fPSA tests with tPSA levels over 20 ng/ml because there was no value in that. When I pointed out that there were studies that demonstrated a value, they changed their tune and said their machines couldn't do a fPSA number if the total was over 20 ng/ml. Time to look for a new lab, I think.

Anyway, no dramatic change = no dramatic change in protocol. More doing what i've been doing - and concentrate on getting the heart right.

I celebrate the first of my major targets this month - 10 years of survival post diagnosis. Ring them bells!!

UPDATED

February 2007

It looks as if I won't be able to depend on the heart problem 'curing' my prostate cancer after all. All reports from the cardiologist are that the regimen I am on has produced a semblance of normality so that I can get on with my life.

The story on the prostate cancer side is not quite as good. My October 2006 reading was 31.4 ng/ml and I was resigned to the fact that I had should get another bone scan. This had in fact been my plan from a couple of years back - to have a scan every two years, but the rise in PSA focused me on the issue. I thought I'd put it off until some time in the New Year - perhaps after my February PSA (which incidentally was 30.9 ng/ml)

That casual plan changed somewhat and I must say I I got a bit of a fright over the Xmas period when I suddenly developed a very severe pain in my back and pelvis, so bad I could hardly sit and found it very difficult to sleep without very strong prescription painkillers. I kept waiting for it to get better - I have a history of back problems and my hips have been giving a bit of trouble for some years now. I had been working in my son's business, bending over a worktop and had also started playing lawn bowls, all of which may have acerbated my problems.

But I didn't get better and as I was running out of painkillers I had to go along to the doctor and bite the bullet. I really thought this might be it - the beginning of the last few laps in my marathon. By the time I had the scans the pain had subsided (and it has never returned, touch wood) but the one scan showed an area 'suspicious for metastasis' on my spine. It is near some other old damage and I think it may well refer to that, but decided to see an oncologist to get a second opinion (the first being mine!!). He said after a brief examination that he thought it might well be a metastasized spot, but that it wasn't enough to worry about in the absence of any symptoms. Just what I felt, so we have agreed to have another scan in three or four months and if there is a significant change may consider some form of ADT (Androgen Deprivation Therapy). Essentially he believes, as do I, that the treatment of symptomatic disease is more important than pre-empting a potential problem that may not arise.

He was quite shocked when I asked him if ADT would be a better option than orchidectomy (the removal of the testicles). He said this was because men shied away from the very thought. I have never understood that. I know that the rationale for ADT is that it is reversible, and orchidectomy is not, but since ADT is a palliative therapy when it is not an adjuvant procedure, surely it will not be stopped long enough for the side effects to be reversed? And does orchidectomy carry the same risks of heart failure and diabetes that the recent Mayo study highlighted as a potential problem with ADT?

UPDATED

June 2007

Well, what to do? Where to go?

I have just returned from my annual trip to St Helena Island stopping off in Cape Town to see family and friends (you can only get to St Helena by sea and the main sailings are to and from Cape Town) and in Kuala Lumpur because we hadn't visited that fine city before.

My appointment with my doctor was four days after we got back so I had my PSA done prior to that and wasn't too surprised to find that it was up a bit again - 35.0 ng/ml - after all the travelling, changes in diet etc. Given that it was 31.4 ng/ml in October last year and down a bit after that (30.9 ng/ml in February and 30.4 ng/ml in April) it seems to be still following the same kind of pattern that it has for some years now, although the graph produced using the PSA calculator looks a little frightening! Still and all, the calculated doubling time is 3.8 years and on that basis I will be 73 before hitting the 100 ng/ml mark, so all in all it looks a if there is a reasonable chance I'll hit my 20 year survival target.

I still haven't had the second bone scan. I really don't like nuclear medicine - the thought of ingesting radioactive material just isn't one I fancy. I guess I'll have to bit the bullet sooner or later, but am investigating a new type of scan that may be available from the local hospital to see if it will be more accurate.

Still no symptoms: still feeling as good as a man of my age might expect to feel!

UPDATED

July 2007

Well, I finally got around to the second scan after investigating the possibility of a PET scan. The general view was that this would not show any more information than a normal bone scan plus CT scan would reveal.

The radiologist was very helpful in explaining the bone scan, although when we saw the oncologist and had a look at the radiologists report, it seemed a bit contradictory to me. The Body Scan states "Unchanged since December 2006. In particular the metabolically active T10 lesion has a similar appearance." This reflects what the radiologist told me after the scan. The CT scan report however - the same radiologist - says": The right-sided posterior verterbral 8 mm sclerotic lesion has increased in size to 3.3 cm in diameter."

The explanation was that the 'unchanged' report in the bone scan meant that there was no sign of any other spots since December, whilst the CT scan showed definite sign of growth, and significant growth at that, in the identified lesion. The onco feels that it certainly seems likely to be a metastasis and most probably accounts for the rise in PSA - which has doubled since May 2005 - and I reckon that is most likely so. He suggested that I speak to a radiologist about the wisdom of radiating this lesion before we consider ADT (Androgen Deprivation Therapy). The onco suggest a radiologist because he tends to work outside the square and he felt that a referral to a more staid organisation or radiologist might result in a refusal to radiate an asymptomatic lesion.

The radiologist was a very nice man and explained the position very clearly. His concern, which has not been clearly stated previously is that leaving the mass, which is still small, to grow could result in interference with the nerves in the spine with unfortunate effects. Whilst radiation was certainly a possibility and with the equipment they have here, which is world class, the risk of collateral damage is small, he felt that this would not be the most appropriate treatment for a number of reasons, all of which I understood and had to agree with.

So that effectively leaves me with the hormone therapy and since I believe now, after talking to a number of local doctors that there is no way I'll be able to have my preferred option of diethylstilboestrol (DES) or estradiol patches, I'll just have to go along with Zoladex. There are many possible side effects with ADT, although they don't affect all men to the same extent - one of which is depression which is what particularly that concerns me. Anyway I'm seeing the cardiologist tomorrow to see what he has to say about any potential problems with my heart medication. the oncologist says "no problem" but he ain't a cardiologist!!

Just to cheer ourselves up we booked on the best cruise I have ever seen - right around the Pacific Rim from Sydney to Sydney - 75 DAYS!! - next July.

UPDATED

June 2007

As is so often the case in life, the contemplation of the effects of ADT was considerably more worrying than the reality of the treatment - for me at least. I have had no serious side effects that I can notice. A bit of a tendency towards a feeling of sadness at times perhaps, but that's about it.

On the positive side, the first PSA test, three weeks or so after the first Zoladex shot showed a very satisfactory drop from 42.0 ng/ml to 12.4 ng/ml. That was encouraging and the second PSA test, two months after the treatment commenced has shown the PSA at 3.00 ng/ml.

My GP, who really doesn't have much of a clue about prostate cancer, or PSA always orders a free PSA test, which I'm happy to go along with as I am intrigued by what this might or might not show. On the latest results, my fPSA is 2.0 ng/ml! What do you make of that?

Next Zoladex shot is in a month's time. Stand by for reports on that!

UPDATED

January 2008

Well, had my second Zoladex shot, which stung a bit more than the first - maybe because I've gone on a full scale weight loss program and am now down 20 kg (say 44 lbs or a bit over 3 stone depending on your place of residence) so there isn't much fat to plant the depot.

My PSA in November was 1.20 ng/ml, which was pretty good going, but the December one got me into a bit of a state because it was 1.50 ng/ml. It was ridiculous of me to be concerned, because I know that that kind of variance is within the normal range of PSA tests, but as I have mentioned previously, I have periods of sadness - not quite depression - and was in the midst of one of these periods when I got the news. Added to that I had just read the abstract of a new study by Strum (but hadn't got a hold of the full report) that seemed to indicate that there was a substantial survival advantage for men who went below 0.05 ng/ml on ADT and I was a long way off that!

Of course once I got out of the black dog mood and once I read the full abstract, I realised that nothing had really changed and so waited patiently for my next PSA test, the results of which I got today - 0.60 ng/ml. That's more like it. Maybe I'll make it to twenty years after all - if the heart failure doesn't 'cure' me. It has been awfully hot here this summer - temperatures of up to 42C (that's about 108F for you non-metricated folk) and that really knocks me around - thank goodness for air-conditioning.

I'm having one more Zoladex shot next month and then, if there is another downward blip, I intend giving it a rest (with the blessing of my oncologist) to see what happens. Will let you know in due course.

I have just completed a chart showing my PSA over the past 11+ years. It shows graphically (literally!!) what has been happening. Here it is:

UPDATED

March 2008

A good result! Down to 0.20 ng/m just before my third (and last for the present) Zoladex shot. I'm going intermittent unless something really unusual happens.

UPDATED

May 2008

I was a bit disappointed with my latest PSA, which is still on 0.20 ng/m. I really thought I might get down to undetectable. Oh well! Can't win them all. My GP feels it is better to have another Zoladex shot, and I guess that's so - I'll be having that next week. I am having some slight side effects developing. I'm losing body hair, my skin is softer and I'm having difficulty in maintaining my weight. Hopefully that won't get worse.

We've had to can our planned cruise in July - hurt by the damage done in the financial markets, but instead we're planning to go to Italy in September. The son of old friends is getting married then so the idea is to go to the wedding then spend a couple of weeks just driving around wehrever the road takes us.

UPDATED

August 2008

Almost 12 years to the day, I got my latest PSA result - 0.17 ng/ml! It's amazing what a relief it still is after all these years to get the good result. And how ridiculous to be happy that it is lower than the last one, given the inaccuracy of the test. But I am.

I guess that's as low as it will go, bearing in mind I still have most of a very large prostate gland. Good enough to go Intermittent - and that's what I'll be telling the GP tomorrow when I see him. Even though he disagrees, Anthea and I had a good chat about the options and believe this is a good one for us.

With only four weeks to go before we leave for Italy, I have to get back to my Italian vocabulary lessons.

UPDATED

December 2008

We had a wonderful time in Italy. Drive 3,500 km over some very interesting roads. I thought the Italian drivers were by and large very good - they certainly know the width and length of their vehicles to the millimeter. We avoided all the large cities, with the exception of Venice, which we visited for the day because we were in the area, and spent our time in the country, admiring the scenery, enjoying the food and meetings some very nice people. Anyone interested in seeing my pictures can see them here: Italy 1 - Siena, Pisa, Venice, Lake Garda, Castelfranco: Italy 2 - Sansepolcro, Tuscany: Umbria: Italy 3 - Urbina, Orvieto, a weekend in a villa near Rome : Italy 4: Praiano and the Amalafi Coast

I had my PSA test last week and it came back as 0.25 ng/ml - up a little from the low of 0.17 ng/ml. I would rather it had stayed down, but that was never going to happen. I don't know precisely how big the gland is right now, but last time it was measured it was about 100 gm - roughly four times the size of a normal gland - so that in itself would generate a good deal of PSA - about 5.00 ng/ml or 6.00 ng/ml on some calculations.

My GP was happy - but not really concentrating as he and his family are heading off for their first trip overseas and are all very worried about the state of the world and the possibility of being caught up in terrorist actions. We all have our different concerns.

Well meaning cyberfriends on Lists and Forums have urged me to take action, but, as I have done since the start of this journey, I'd rather collect a bit more evidence of necessity before doing anything more. Next PSA in February!

UPDATED

March 2009

We had a friend from South Africa to stay for the month of February, so I waited until she had gone home before having my PSA last week. Got the result yesterday, along with all my other annual blood tests. PSA was up a tad at 0.36 ng/ml, but that was much lower than I thought it might be. I don't get too anxious any more, but the thought of what I might do if there is a big jump does come to the forefront of my mind. I'll probably have another test in six months time I think.

Good news on the heart front too. I went for my quarterly check with the cardiologist and he pronounced himself happy with what he could hear. I'll have another echocardiogram before my next appointment with him in September.

So! Seems I'm well on my way to complete year 13 and seem to have a reasonable chance of hitting my original target of 20 years, although there's many a threat along the way.

UPDATED

June 2009

Although I intended waiting for six months for my next PSA test, my MD wanted me to have one at three months. Up again, now to 1.20 ng/ml, the same level as it was in November 2007.

We're off to South Africa to see family and friends and to celebrate a significant birthday with a pal of Anthea's who is hitting the same milestone three days earlier. We hadn't intended travelling this year but the death last week of a friend who had PCa highlighted the importance of today rather than tomorrow, even though I'm still aiming for 20 years plus.

UPDATED

September 2009

We had a great trip to South Africa - many parties, much laughter. I think as we all get older - most of us are in our 70s or pushing 70 - we realise that we have a finite number of years left to celebrate. Had another 3 monthly tests as requested by my MD.

Not sure what he'll say when I see him next, but it is up again to 2.2 ng/ml. At this level the lab also gives a free PSA level - 28.6%.

So! No change in treatment then - onwards and upwards.

UPDATED

January 2010

I had intended to extend my PSA testing from three months to six months, but my GP wasn't happy with that and so I had another test this month. Unfortunately the rules regarding payment for the tests have changed and although I can get a total PSA test as often as my GP agrees, the laboratory will no longer supply freePSA results unless I pay for them.

My latest result was 5.2 ng/ml, well up on the September 2009 2.2 ng/ml, which led my GP to discuss what I should be doing - clearly he wants me back on Zoladex. I said I thought there were two relevant issues:

1. I still have an intact gland - and a very large one at that, measured at over 100 gm last time that was done. This must be generating some level of PSA - a minimum of 6.6 ng/ml according to one formula - and when all is said and done, my PSA was 7.2 ng/l thirteen years ago, when I was diagnosed.

2. The oncologist expressed the view that no action was required until my PSA got up to its former level - about 40.0 ng/ml

My GP isn't too happy with that, but…..he's not the specialist. We agreed to have another test in April.

UPDATED

April 2010

Well, the latest results aren't good news in anyone's books. Up again by another 3 ng/ml to 8.2 ng/ml - just 1.0 ng/ml more than it was back in 1996!! The graph shows an increasing slope and a shortening doubling time so I think it is time to please my GP and get back onto the Zoladex, even thought the oncologist would be happy to wait a bit longer.

BUT....first we are going to take another trip. This time to the West Coast of the USA. After a flying visit to Las Vegas and (hopefully) the Grand Canyon, we'll fly up to Seattle to meet up with some long-time pals, pick up an SUV and then wend our way down through Washington, Oregon and California, seeing all the sights on the way.

Although I didn't have a bad reaction to the Zoladex last time, I'm not taking a chance this time and will have my first shot in June when I get back.

UPDATED

August 2010

We had a terrific trip to the US. Anyone who thinks there isn't a life after a prostate cancer diagnosis can check check out these shots and get some idea of how much we enjoy our life Las Vegas: Grand Canyon: Seattle: Victoria : Seattle- San Francisco: San Francisco - Los Angeles

Back home after our 15 hour plus flight, I went in to the doc and got my Zoladex shot. I didn't feel a thing - not that there has ever been muh pain - and asked if he'd manage to implant it because I hadn't felt anything. His response was that there was a fair bit of schmalz. Cheeky blighter! Anyhow, no reaction to the shot from me - apart from the fact that my PSA dropped down to 2.3 in 10 weeks. Unfortunately not low enough to give the second shot a miss - so I'll have that next week.

Planning a European River cruise over Christmas - the excuse is to celebrate my 15th year since my diagnosis!! One thing about Bucket Lists is that they never seem to shorten.

UPDATED

November 2010

Had the second shot in August. Was still hoping to avoid the third one ahead of our "White Christmas" trip next month, but the PSA result I got yesterday was 2.1, so it's another Zoladex next week.

Although I don't worry too much about PSA tests these days, and although I know that one PSA test not going the way I'd like it to go is not serious.....I would still rather have had a lower number:-)

I'll be back in the New Year.

UPDATED

February 2011

Well, we had a tremendous holiday - and certainly got our White Christmas! That's the link for anyone interested in the pics.

We old timers say to the newbies "Don't make a decision on one PSA result. Look for a pattern." That advice is rather ironic in the light of my latest result - 2.9 ng/ml. Is that good or bad? 2.9 ng/ml isn't a bad reading for a man in his late 60s with a large gland, is it? The reading was 8.2 ng/ml in April last year - so that looks even better. But the last PSA - in November last year was 2.1 - so that's a massive increase. That's not good, is it? It's more than the recommended 0.75 ng/ml/year!!!

But I had three Zoladex shots - one in May last year and one in August and one in November. No wonder the PSA went down after that! And it did. These are my last four readings: April 2010: 8.2 ng/ml; August 2010: 2.3 ng/ml; November 2010: 2.1 ng/ml: February 2011: 2.9 ng/ml

What conclusions can be drawn from this set of figures? Pessimists will say (and they may well be right) that the lack of powerful response to the Zoladex shows that the disease is becoming hormone resistant: Optimists (count me as one at least) say you could throw a small blanket over those results and nothing is moving, so that's more likely to be good news than bad.

So, what to do? Men who consistently advocate the 'scientific' approach and 'evidence based' medicine might find it difficult to find a scientificaly based answer, supported by good evidence, to that question. What will I do? Watch this space.

UPDATED

April 2011

Well, this month's PSA was no better - up again to 3.4 ng/ml. I checked my testosterone level which was below castrate level, so clearly the Zoladex was doing what it was meant to do. I really like my GP, but he knows very little about PCa so we agreed I should see the oncologist again.

He was, as ever, pleasant and reassuring (even though I wish he'd see me in time!!) I had a good meeting with him although I thnk that no one with my best interests at heart will feel happy with our joint decision. I guess one of the reasons I like him is that he shares my views (or do I share his views?) about the relevant value of PSA as an indicator of problems at low levels and the wisdom of early aggressive therapy.

Thinking through the issues ahead of our meeting I realized that I was not in the same mental position as I was when I had another major decision to make – back in 1996. Back then I knew nothing, but rapidly came to the conclusion that much of what I read was not necessarily based on 'fact' but 'belief' albeit 'scientific belief'. Surgery was NOT necessarily the gold standard: men were being over-diagnosed and overtreated. On that basis I took the road less travelled, having decided that the risk/benefit analysis FOR ME showed more likely benefit from not having invasive therapy. [This thinking is expanded in a piece I wrote last year - 2010 - I was asked to summarise why I had not chosen to have immediate aggressive and invasive therapy. My response is here.]

That decision has been a good one so far. Having learned a good deal over the intervening years, I realized that my original analysis had become clouded by the additional 'scientific beliefs' that I had learned and almost come to believe myself. Standing back and looking at my position within my paradigm as objectively as I could I came to the conclusion that no expansion of my basic ADT Lite might be a good decision for me. And that is what the oncologist suggested. He is of the opinion that it is only very high and rapidly rising PSA levels that need attention – or the development of symptoms. A further scan was an option I might like to consider. In this his advice was very similar to Henk van Scholten, a doctor whose views I always admired.

And so the die is cast. I'll continue Zoladex and have an annual PSA. In the light of this decision I may have to stop participating in internet forums lest I am burned at the stake. I fought off the critics of my original decision when (AS) Active Surveillance hadn't been invented, but am not sure I have the desire or the energy to defend my views again.

UPDATED

May 2011

Well, now I'm changing doctors. My GP forgot that I was due for another Zoladex shot and when I reminded him, forgot to give me the prescription to pick it up. I feel bad because he has not been well and has cut back his surgeries to only three a week, but seems to have reatined the same list of patients, so there is a wait of an hour or more to see him, even if I've made the first appointment in the day.

I had another Zoladex shot at the end of May - a little late - but I am beginning to wonder if I have lost the plot and am beginning to be somewhat obsessed by minor PSA movements. One of the things that got me thinking along these lines was reading the thoughts of Lorenzo Q Squarf, a man who I had a lot of time for when he was active on the Lists and Forums. Squarf would have laughed at my worries, given my proximity to my "Best Before Date" when I hit the Biblical threescore years and ten. This summarises what he says to men in their 70s:

If you are in your 70s, and if you have a suspicious DRE that does not clear up or if your PSAs are beginning to sequentially rocket upward or if you have negative symptoms you might consider urological action. But be very fussy about what constitutes negative symptoms. If they are not all that distressful consider treating the symptoms. Think amelioration of discomfort rather than aggressive intervention, but, if ordinary stuff can't supress your discomfort, why, discuss your particulars, and especially your personal values, with a urologist who listens carefully, and who seems to care more about you than his theories of aggressive intervention.

I haven't had a suspicious DRE: my PSA isn't rocketing upwards: I have no symptoms ..... BUT.... I would still like to find this mythical urologist or oncologist who will listen to my thoughts on my current PSA, charted below.

When I consider my PSA levels, I tend to concentrate on the chart above of PSA tests, taken after I started on ADT in 2007 and look at that peak and the upward curve and think "I need to stop that". But then I look at my overall PSA since diagnosis - the chart below - and think, "I have some way to go before I get up to the level I was at in June 2007 - almost four years ago." Maybe the oncologist is right? Maybe I should just wait until I hit the Squarf criteria and just get on with my life?

Later: One of my cyberpals was good enough to mail me after he had read this latest updated and was concerned because he thought I sounded somewhat down. And on reading the entry again I can see why he got that impression, so I'm happy to clear up the issue. I was indeed somewhat depressed, probably as much with changing doctors (and dentists!) as anything and I was concerned about my PSA levels.

BUT...... I have seen the light again, regained my usual equanimity and thanks to some kind words from Dr Israel Barken on his weekly Call-In am looking forward confidently again. I've put my money where my mouth is and we've booked not one, but two trips. The first, in September is a wonderful cruise - read all about it! And the second is to celebrate my BIG birthday with friends and family in Cape Town in February/March next year. Thank you Air Malaysia for your special offer on fares - just wish they had some to the USA. I still want to drive through the Mountain States!!

UPDATED

November 2011

I only realised, when one of my pals mailed me to ask what had happened since May, that I had been slack at updating my story. Put it down to the whirl of international travel.

I duly had my August PSA test - up again to 7.2 and my next Zoladex shot, although it is clear that this medication is no longer working. My PSA is rising and the side effects I had noted (none serious or of great moment) have all but disappeared.

Since my existing oncologist declined to even consider changing medication or my personal preference - diethylstilboestrol (DES) or oestrogen therapy - regretfully I decided to let him go and look for someone who would at least tell me I was wrong - and suggest something other than participation in a trial.

I set out my specifications to my new GP and she duly did her search and introduced me to a new oncologist - old enough to know a bit about the business: young enough not be too set in his ways (I hope). He seems a very nice bloke and I'll see him next month again to see what he comes up with. In the interim, it is another Zoladex shot after the PSA test next week.

We've had a sad time lately in losing one of our dogs - he was 14 and had a good life - with another very ill one. He's only nine and, it seems, has a severe kidney problem. Poor boy. But we had a great trip: we're looking forward to the next: life goes on, by and large pretty well.

UPDATED

December 2011

Sadly our wonderful dog did in fact have an untreatable kidney problem so we lost him too. It really was a blow losing two of our much loved dogs in such a short time.

But life must go on and so it was back to dental and medical attention. Teeth seem to be OK now: heart is doing well, according to the cardiologist, so all that leaves is the prostate cancer and there things are not quite the way I'd like them to be.

I had another PSA and Testosterone test before my meeting with my new oncologist. The PSA was up again to 15.5: the T level was still low at 0.60 but higher than August when it was 0.30, so clearly something had to be done. I was overdue for another bone scan, so my MD and I agreed to have that done ahead of the oncologist meeting. I really don't like these nuclear scans. I know that everyone assures me that they are safe, no harm can come - but then men are often assured that they will nt have erectile dysfunction after surgery. The thought of injecting radioactive material into my body is simply something I don't like.

The scan was clear and resulted in congratulations from both my MD and my oncologist. BUT……..I said to them, "What has happened to the area 'suspicious for metastasis' on my spine which had been identified in 2007 and which led to my diagnosis of 'metastasised disease. Why does that not show up." Some confusion was the response, but the question was put aside to focus on the positive aspect that there was no positive sign of lesions. There was no point in pursuing the matter, but it seemed obvious to me that it would not be a good idea to rely too much on this notoriously inaccurate scan.

I suspect that the scan was not a good one because of a lack of care at the hospital. The material used for bone scans has a half life of six hours. The optimum time for a scan is about two hours - I had my scan four hours after the injection of the nuclear material. Shouldn't make a difference says one of my friendly Internet experts, but qualifies his answer with "provided that the material has been prepared and handled correctly." But he can't explain the missing lesion either.

So all in all, whilst it is nice to feel that there are no obvious signs of substantial lesions or spread, I don't get a great deal of comfort from the scan itself.

To the oncologist and we have a good chat about options. I'm for switching from Zoladex to Lupron and adding Casodex: he's not that keen, preferring to maintain the Zoladex and adding Casodex, so that we can judge the effect of this combination before considering a further switch. We agree on this compromise and an earlier review date of six weeks instead of three months to see what is happening. I mention DES (diethylstilboestrol) and he counters with the Abiraterone study that is still recruiting in Australia. Both of us know that we don't fancy the option put forward by the other - and so we grin and part for another six weeks.

UPDATED

January 2012

Well, that Casodex kicked in and my PSA this month was 6.4 ng/ml. My smiling oncologist said that I should be happy with that. My response was that while I wasn't unhappy, I would have been happier with a bigger dip! So I'm staying on the double Zoladex/Casodex and we'll see how that goes.

UPDATED

April 2012

Not much of interest to report. I had another PSA test in February and that came in at 5.8 – a little lower than January's 6.4 ng/ml but still within the range of the previous test. But a blip down is always better than a blip up!

I'm seeing the oncologist next week for our three monthly review meeting so I had another PSA test on Monday and that's come in at 5.9 ng/ml, so it seems that there is some stability. Just in passing, after I entered the new number in my records I noticed, somewhat ironically, that if I take all the PSA tests I have had in the pst sixteen years, the average is………5.9 ng/ml. If nothing else that demonstrates some of the issues in using averages and medians to make decisions or interpret studies. What is more important is the range of PSA results – and what changed them. The range is wide – starting in August 1996 at a level of 7.2 ng/ml it went as high as 42.0 ng/ml in June 2007 but was as low as 0.17 ng/ml in August 2008.

I have had a deal of problem over the last two weeks with my teeth and one, surplus to requirements, had to be removed. Since I am on Warfarin that is always an issue. With an Australian study showing that the risk of stopping Warfarin is greater than the risk of tooth removal whilst on Warfarin, I opted to stay on the drug as I have in the past, with good results. Not so this time. For the first 24 hours the site bled profusely (I wondered just how much blood I might have lost, thinking of a dripping tap and a basin with a plug in it!). I had a couple of stitches in it yesterday and am rinsing with a (very expensive) mouthwash which seems to be doing the trick so hopefully I won't slowly bleed to death.

BUT….one good thing that came out of this was that the mouthwash had to be made by a compounding chemist and he has agreed to knock up a batch of DES (diethylstilboestrol) for me if and when I need that – and if and when I can persuade my oncologist that it's a good idea.

UPDATED

May 2012

Well, what an exciting month – so far. The morning of the day I was to see my oncologist, I also had an appointment with the optician for my annual test (free, courtesy of our socialised medicine). I was in a hurry because it was pouring with freezing rain, decided to nip across the road instead of going to the pedestrian crossing and missed my step, measuring my length in the roadway, landing on my right knee, hand, elbow and cheek. Long story short, I broke a bone in the elbow and a couple in the wrist. Nothing serious, just uncomfortable and a darned nuisance.

I am feeling much better and today for the first time I have been able to use my right hand to process some words. Until now I had to use one finger on my left hand – very slow work and surprisingly tiring. It has been a real nuisance to lose the use of one hand and it is surprising what one cannot do. Of course there is no question of driving, but simple things like trying to pay for my haircut caused problems – try taking your wallet out of your pocket and removing the right number of notes with your left hand – and then try putting the change in!! or tucking your shirt in on the right side of your body – or doing up a belt, or drying your back or opening a bag of sugar for your coffee. Nothing serious, but …..

Always looking for the positive, it seems clear that there has been no significant deterioration in my bones, despite the ADT (Androgen Deprivation Therapy). No shattering of brittle bones, just a small break in an awkward spot. The oncologist was also encouraging. He suggested no change in medication since my PSA has not changed significantly, so I get my next Zoladex shot at the end of this month and my next PSA in July.

Another interesting side issue was the use of herbal supplements. My sister and sister-in-law are both great believers in these and both suggested I take Arnica and Comfrey (aka BoneKnit) to help in my healing. Despite my underlying views on the unproved value of such supplements, I took the Arnica for a couple of days from a supply Anthea had bought for her own use. Surprisingly (and perhaps coincidentally) my arm started feeling a deal better after a couple of days. But we couldn't buy the comfrey – banned in Australia. I went to the Memorial Sloan-Kettering site that is so useful to find out about supplements and found:

1. That in June 2001, the FDA asked all manufacturers to remove products containing comfrey from the market because many cases of liver toxicity have been reported with use of comfrey. One of the substances in comfrey also causes cells to increase the rate at which they divide, This is thought to help the healing process, but, I felt, was not the sort of encouragement to give to cancer cells.

2. On the basis of this information, I thought it might be an idea to look up Arnica and found this warning Do Not Take If You are taking Warfarin or other blood thinners (Arnica may increase their effects). Since I am on Warfarin, I stopped taking the Arnica.

I'm looking forward to some date about four weeks from now when my arm should be fully functional.

UPDATED

July 2012

Another day, another PSA test. An increased PSA is never good news and mine is up again – 8.7 ng/ml from 5.9 ng/ml in April. So……what to do?

Next month it will be sixteen years from my original diagnosis. My PSA then as 7.2 ng/ml but a fair bit of water has flowed under the bridge since then!

I'll be having a chat to my oncologist later in the month and my guess is that he'll say "Leave everything as is for the moment." And I'll probably do just that.

UPDATED

July 2011

Well, I must be psychic. I saw my good Doctor Lionel Lim this afternoon. I had forgotten that the last time I saw him was the day I broke my arm – how time flies! His opening remark was that I looked much better.

We had a good chat, as we do, and I was struck by his saying that his training was not to 'follow the numbers' but to treat each patient. He wondered if the focus on PSA was the best way to go, given the vagaries of the test and my good health and lack of any specific problems or symptoms. That resonated with me. Years ago I 'met' a doctor from Netherlands – Henk Scholten - in an Internet Forum. His message was

"Forget about early detection, just wait for symptoms which in the huge majority will never arise and if so can be treated with either hormones or TURP. Some tumors behave aggressive from the early onset and are deadly, they cannot be cured by local therapies."

He even visited the Yana Forum in March 2010 to repeat his message to a new audience.

I followed Henk's view for a number of years and as I talked to Lim today, I realized I had been unduly influenced by the focus on PSA and my concern about Nemesis whacking me about the ear because of my hubris. So no change for the present – Lim said he'll see me in three months if I wanted to, but if I went to six months that would be OK.

I decided at this stage to go the three month route, but may change that as time goes by.

UPDATED

October 2012

Well the three months was up today as was my PSA – from 8.7 to 13.4 this week, still below November last year, when it was 15.5, but I wasn't on Casodex then but on Zoladex only.

So off we went to the good Doctor Lim. He is such a nice bloke and after running through the blood results and his usual questions about any sign of symptoms, we started discussing therapy options. He paused in the midst of this to ask if I was OK as I seemed somewhat 'down'. I said I had been a bit depressed of late – and explained to him my analogy to a locust swarm. There had been a seemingly endless stream of events to deal with – deaths and illness of friends, problems with the house heating, the garage door, a con-man who debited my credit card without authority. Nothing major and each comparatively easy to deal with – as easy as crunching a locust underfoot. But the numbers…… But it was nice of him to notice.

He reiterated that there was nothing to worry about right now in his opinion, but since I seemed concerned, we might take a couple of options. We agreed to stop the Casodex, have another PSA in six weeks to see what the result of that was and if there was no fall or a rise, to consider diethylstilboestrol (DES) 1 mg dose (my choice) or Androcur (Dr Lim's choice).

UPDATED

December 2012

I saw my oncologist, the good Dr Lim, yesterday.

My PSA has been rising at a rate that most people would regard as fairly frightening. It was 9 in July and 18 this month – a doubling rate of four months not being ideal. So it is pretty clear that the Zoladex is no longer effective. I had added Casodex - but that was not effective either so I stopped that some weeks ago. So this all points to the probability, based on PSA only, of the disease having become AIPC - Androgen Independent Prostate Cancer or HRPC (Hormone-Refractory Prostate Cancer). That in turn means that further Androgen Deprivation Therapy (known as ADT ) is likely to be ineffective, although.......sometimes using one drug instead of another can produce a good result.

Ahead of my scheduled appointment I did a bit of thinking about what I should be doing next and I realised that I had succumbed to PSA anxiety. I KNOW that PSA is not a good test, that it is variable for no reason, etc etc. and yes, I know that the standard response to any criticism of PSA is that "It is the best test we have.", which really has nothing to do with the question of using PSA alone to make decisions.

By chance I received a number of items of mail that were relevant, in my eyes at least, to my decision making. One was a piece written some years ago by Dr Snuffy Myers, mentioning that SOME patients' prostate cancer will not cause serious health problems until the PSA is between 1,000 and 2,000. That is borne out by SOME of the stories on this site. In fact ROY WHITE in Western Australia whose PSA went out to over 15,000 earlier this year before it was reigned back to "only" 1,100. With a doubling time of 3 months it would take me 2.75 years to reach a PSA of 1,000 so it seems I may have a bit of time in hand. Another was a study warning to be careful about using doubling times to make absolute predictions.

Anyone who has read my story will know that my natural inclination is to try to calculate the odds and if the glass is half full, or even MAY be half full or even have a fair drink in it, I'd rather take that option. So I decided to stop all medication, let the effects trickle out of my system and then, perhaps in January 2014, have another bone scan and a PSA to see what if anything they could tell me.

Dr Lim didn't entirely agree with this approach and although he has been very good in discussing everything very thoroughly, he jibed at the 12 month delay in testing. I found it somewhat amusing that his main concern was that he didn't want to see me with widespread metastases in my proposed time span. I asked him if he had any experience of such a rapid advance in a diagnosis with a Gleason Score of 6 or even 7a? And he had the good grace to admit that he hadn't, but was still uneasy about such a big time gap. So we compromised on six months, with a small bet on what my PSA will be by then. I said it would be under 80: he said he thought between 90 and 100. We shall see. I'm looking forward to some of the more annoying side effects fading away over the next six months!!

I know it is a bit of a risky path to take, but then I've been doing that for 16 years, according to the experts who predicted my demise within 3 to 5 years of my diagnosis in 1996.

UPDATED

June 2013

Well, I won my 'bet' with my oncologist. He said he thought my PSA this month would be between 90 and 100 ng/ml: I said under 80 and it came in at 38.8. I haven't seen him yet – he was away in Chicago at the recent conference – and I will be suggesting that we try a 12 month break in PSA testing this time. Not sure he will agree with that.

In the meantime other issues are looming. I had a full array of blood tests done when I had my latest PSA. They were all OK except the creatinine level which had increased by 50% since my last panel of tests in November last year. Then I had been comfortably inside the 'normal' limits; now I am half way between 'normal' and 'danger'. This is normally a good indicator for the development of chronic renal (kidney) failure.

Needless my first reaction was to make an appointment with my doctor, but I couldn't do that as she was away on holiday, so I saw one of her partners. I had read the relevant material I could find on the Internet the appointment and he did what I would have asked him to do – order a re-test and undertake a wider test. He suggested we wait ten days in case there had been some infection – I have no relevant symptoms – and felt that, if the kidneys were malfunctioning the most likely cause was the medication I have been taking for my heart condition. This was not entirely surprising since there had been some references to this possibility. I asked him ifhe thought that there might be a possibility of the prostate cancer having metastasised to the kidneys and he thought this unlikely in my current circumstances. If it is the medication I may have Hobson's Choice: cut back on the heart medication and risk a heart failure or keep up the medication and risk kidney failure. Guess the only good thing about that would be that it would increase my chance of being cured of prostate cancer.

I'll have the test results by the end of this week, a week in which fortuitously I see my cardiologist, and will also see my GP who is back from her holiday. All before I see the good Dr Lim towards the end of the month. Isn't growing older great as parts start to malfunction?

UPDATED

July 2013

Well, Dr Lim's mind has been put at rest as far as bone metastases are concerned. Because my PSA got to 38.8 before I saw him, he insisted that I should have another bone scan, which I did. It came back with "no evidence of metastatic activity. The lesion identified in my 2007 bone scan is no longer visible.

But there is another problem. The blood panel I had before my appointment with Dr Lim showed a significant increase in creatinine level – from 100 ng/ml to 157 ng/ml. I immediately had a second test which came in a little lower at 148ng/ml but it was clear that there was a problem and that I was facing the possibility of kidney failure. An ultrasound scan showed that my right kidney is in very good condition but my left kidney shows evidence of hydronephrosis. This condition occurs when the flow from the kidney is obstructed and the interpretation of my scan is that the appearance suggests a long standing junction obstruction.

I have now had a CT scan to try to establish the nature of the obstruction. I will get the results of that in two days and discuss my options with my urologist. Hopefully that will be resolved by the end of July when I have an appointment to see Dr Lim again. He wants to start me on ADT but I have challenged him on this, asking him if the aim is just to chase numbers down. There is no evidence today of metastasis (at least until we see the results of the CT scan) so why simply damage my QOL for a reduction in PSA?

Later:

I picked up my scan report today. The CT scan identified what appears to be a localised tumour giving rise to the obstruction. If this is so, then it seems that the tumour has not made much progress since 1996. Another oddity which this scan and the ultra sound scan reveal is that my prostate gland is normal size - about 25 gm. When I had my TURP back in 2005, my gland was said to be 'very large' and estimated to be in excess of 120 gm. What happened to the gland since then? And could the current upward movement in PSA have anything to do with the kidney problems in the absence of clear indicators of metastasis?

It should be an interesting meetingwith the new urologist next week.

Later:

Well, I had an appointment for 08.30 but when we got to the doctor's rooms not only was he not there, but he was not expected that day. After a number of phone calls it was established that he WAS coming in, but was running fifteen minutes late. He finally arrived about 45 minutes late by which time we had left. I know that he could have been held up, even that early in the morning, by someone with a greater problem than mine, but the entire attitude at the rooms was just not good enough.

I saw my GP later in the week and she has found me another urologist who I see next Friday. My GP feels, as I do, that a stent may do the trick.

Later:

I saw the urologist July 27. A very nice man who confessed he had never had a patient like me – and that was before we spoke. I had sent him a summary of my seventeen year prostate cancer history. Most of the men he sees are newly diagnosed.

He confirmed that in his opinion the problem has been caused by the expansion of the tumour from the prostate gland to the junction of what is termed the VUJ - vesico-ureteral junction of the left kidney. The right kidney is fine. This VUJ is where the 'pipe' draining the left kidney enters the bladder and because it is blocked, the kidney is essentially waterlogged – or should that be urine logged. Anyway it is swollen and not functioning.

So the plan is for me to be admitted to hospital on August 13 (almost seventeen years to the day that I was diagnosed!!) for a short stay – probably not more than 24 hours for the resection of the urteric orifice – that is the "reaming out" of the material causing the blockage, rather like a TURP (Trans Urethral Resection of the Prostate). The material removed will then be sent to the pathology lab for analysis and to confirm the diagnosis of cancer. A stent will be placed in the reamed out area and this should enhance the flow and allow the kidney to recover most, if not all its function. The stent may need replacing in 6 – 12 months as apparently it 'furs up' over time.

Of course I have to get clearance from the cardiologist to stop my Warfarin and to replace it with a twice daily injection of Clexane, which is a bit of a nuisance, but I don't see too many problems there. I am seeing him on Wednesday next week – July 31 - to set that up.

Unfortunately towards the end of our meeting my new doctor and I had a clash. The first thing that annoyed me was when I asked him if he thought there was any possibility that the kidney issue might have an influence on my raised PSA. His initial response was to say that it could not because PSA is Prostate Specific. When I said I disagreed, he merely repeated himself, so I asked him how bladder infections and UTI could affect PSA if that were the case? He said he had misunderstood my question – but failed to answer it and I could see my dear wife figuratively kicking my ankle, so I desisted further.

The next burr under my saddle was when he asked me if I had any regrets in not having surgery back in 1996. I said I didn't and he commented that I would not have had the present problems if I had done so. Biting my tongue I forbore to point out the statistics that showed at least a 25% failure following surgical procedures, a high potential for negative consequences and the increased risk from my skin type. Far from only having this problem 17 years after diagnosis I might well have had it back in 1996 and had to endure many years of problems. Very depressing to find a young doctor still wedded to the 'golden rule' of early surgery irrespective of diagnosis.

UPDATED

August 2013

There is not a great deal of good news following my recent procedure – cystoscopy, the resection of the urteric orifice and the placement of a stent to ease the problems in my left kidney although I must record my apologies to my new urologist Dr Tong. He has turned out to turned out to be a first class man – and doctor – who wholeheartedly supports AS (Active Surveillance) in appropriate cases. He and I had a good chat before the procedure and settled some thorny issues from our first meeting. He acknowledged where I was coming from and that my decisions until now have been reasonable.

He came to see me on the evening of the procedure with his portfolio of amazing pictures which showed the growths in my bladder, and the masses blocking both ureters. The growth at the bottom of the left kidney ureter was much greater, and apparently older, than was expected based on the scans. That kidney was almost completely blocked and seems to have been for some time now. The ureter is so badly damaged that the kidney may not recover. He was not able to put the correct sized stent here and had to use a smaller one.

But the first big surprise was the ureter from the right kidney, which was also badly blocked, although this had not shown up on the scans. It became clear that I have been operating on this one kidney for some time and it is now not functioning very well - to say the least! The expectation is that the stent which he was able to insert will result in this kidney regaining most of its functionality. And the first bit of good news is that from the initial blood reports, the creatinine levels which are used to judge functionality show a rapid drop back towards normality.

The pathology results on the masses was the second big surprise. I have always been intrigued by the question as to whether all prostate cancer tumours progress and change from those with a low Gleason Score to ones with a high Gleason Score. My view was that this was not necessarily a universal rule. It is somewhat ironic therefore that a study published last week (Gleason Grade Progression Is Uncommon with an excellent commentary How low is the risk for Gleason score progression over time? confirmed my view. Yet despite my initial diagnosis 17 years ago of a GS 7a (or GS6 or GS5, depending on which of the three pathology reports I had) the histology report for the bits removed from my bladder all showed GS 5+4=9. No question of progression there!

So that changes the game somewhat. Although a GHS 9 diagnosis tends to send shivers down the spine and to induce a somewhat depressive outlook with the expectation of an early demise, in fact there are many exceptions to the rule. One of the few long term studies shows that men with tumours that have Gleason scores of 8 to 10 face a 60% to 87% chance of dying from prostate cancer within 15 years of diagnosis. This is mainly because at the time the study was done the men tended to be older rather than younger and died from some other cause. Another more recent study puts the mortality at a little over 50% in a ten year period.

I am inclined to the view, being just a tad of an optimist, that I will be on the right side of the estimated mortality rate. There are many new therapies that have been introduced since the first study was done and as the stories on my website show, whilst there are many men with a GS 9 diagnosis who have died, there are many more who have lived.

I have already started the next round of ADT (Androgen Deprivation Therapy) with Androcur to which will be added Eligard or Zoladex and possibly one of the third elements that make up ADT3. Dr Tong says I must seriously consider EBRT (External Beam Radiation Treatment) – and I will, bu I am still very reluctant to go down that path.

It was always my aim to have a twenty year survival – and since my procedure was carried out almost seventeen years to the day from my diagnosis, that leaves three to go, I reckon I have a chance of getting there. Stand by for updates in due course.

UPDATED

September 2013

Well, I added Eligard to my Androcur last month, and doubled the daily Androcur dose. Dr Lim my oncologist doesn't like the packaging of Eligard, using it is rather like buying something from IKEA – the injection needle has to be assembled in a rather complex way. So next shot in two months will be Lucrin aka Lupron. Upon such issues are our medical fates decided.

My daily dose of Warfarin was suspended a week before the procedure last month and replaced by a daily injection of Clexane until the day of the procedure. Back on the Clexane after the surgery and then a re-introduction to Warfarin with a rapid increase to the dose I had been on for some years. A couple of days after I increased the dosage I notice that I was starting to bleed more heavily – the bleeding had almost stopped prior to this. I sent an e-mail to Dr Tong asking him if I should be concerned, but he did not respond – turns out he doesn't read his e-mails??

The following night I woke at about 01.00 with very dark blood simply dripping out and an inability to pass urine which was beginning to back up and cause some pain in the kidneys. By 04.00 it was clear that I would need medical help, so we called the ambulance. The doctors on duty at the Emergency Room could not get a catheter into me – it was rather amusing to watch them battle – so they called in Dr Tong, the surgeon. He got there about 07.00 and said he would have me in the theatre by noon – getting me a shot of morphine to deal with the pain which had been building.

I learned, when I was in Recovery, that it was touch and go as to whether I would receive a transfusion to replace the blood I had lost – but that was not necessary in the end although I did have a transfusion of a litre of some liquid to replace that lost. I also had two transfusions of Vitamin K to counteract the Warfarin and was told in no uncertain terms never to take Warfarin again. When I asked for an explanation – having been told for seven years that the daily dose of Warfarin was absolutely essential with my heart condition to avoid a stroke – I was told that my risk of exsanguination if I took Warfarin was greater than the risk of stroke if I did not. Nice choice!

They kept me in hospital for three days flushing every skerrick of blood out of my bladder and also got the Radiologist Dr Patrick Bowden to speak to me about IMRT (Intensity-Modulated Radiation Therapy). Although still not entirely convinced about the necessity of radiation at this stage, I have decided to bow to the pressure exerted (and the logic) so I start the first of my 35 therapies on Monday September 30.

It has taken me a surprising amount of time to feel up to doing simple tasks around the house, using my computer etc. It didn't help that I came back from hospital with a rather bad cold – guess it is lucky that was all I caught! – and of course I'm still getting used to the ADT2.

I think I'll survive – the doctors are all positive, but then they would be wouldn't they?

UPDATED

November 2013

The IMRT (Intensity Modulated Radiation Therapy) was completed on November 18 2013. Although the prospect of seven weeks of daily sessions loomed large initially, time passed quickly, although it was a big chunk out of each day. I was fortunate to have only minor transitory problems but I did feel very tired over the last three weeks or so. I still do, but the effect is clearly wearing off. Of course we will not know how effective the radiation was for twelve to eighteen months (which coincidentally is when permanent damage to other parts might manifest itself!!). But, so far so good. The cells are also being managed by the ADT (Androgen Deprivation Therapy) with my PSA down to 12.9 from about 91 in September. I'd like to see it lower, quicker, but then you can't have everything you want!!

The kidney position has stabilised. The left kidney is not functional, but the right one seems to be managing pretty well with the stent in place. The plan is to replace both stents in February, six months after they were inserted and depending on their condition, they would then be replaced nine months later and then every twelve months thereafter. The stents create a few minor problems with the bladder and also by the sharp ends digging in if I sit in steep backed chairs, although this has improved a good deal since I lost weight (deliberately) – I'm down about 15 kilos/33 lbs/2.4 stone!! Yes, I was a bit plump!

My heart condition seems to be satisfactorily stabilized. My risk for stroke is somewhat enhanced because I no longer take Warfarin or any other blood thinner. My cardiologist has offered to provide an alternative thinner, but I'm not convinced by its alleged efficacy, since there is no way it can be measured.

UPDATED

March 2014

December was looking quite good as far as the PSA was concerned - down to 6.6 ng/ml. I changed my main ADT medication to Lupron/Lucrin and kept on with the Androcur. There was no apparent change in the kidney function. I had some urinary issues - urgency and nocturia. When I had my 'sign off' consultation with the radiologist I suggested he might be to blame, but in fairness, as he said, I do have a foreign body in me and it does mess with the bodily function signals.

The stents continues to give trouble, digging in and causing blood in the urine when I had to sit up straight for any length of time - driving my car for example or going out to dinner. Not a big deal, but annoying nonetheless. I continued to be enervated and doing any kind of chore about the house or garden just drained all the small charge of energy I built up. This wasn't helped by one of the hottest summers - my heart condition/medication makes heat very difficult to deal with. But with a deal of good sport on television, a comfortable chair and air-conditioning I got by, remembering to keep my liquids up. Alas! not beer.

The news on the PSA front in February. Back up to 11.20 ng/ml ahead of my meeting with my urologist. What would he suggest to combat what seemed to be a failure of ADT? Well, initially, he suggested we might just continue with the current regiment Lupron and Androcur. When I suggested, in aa joking way (we have a good relationship that Nietzsche had suggested that repeating the same actions and expecting different results was one definition of insanity, he agreed to try DES (diethylstilbestrol) as I had suggested some time ago. Not happy with this decision but agreed it was worth a try. He would still rather I tried Zytiga (Abiraterone) first but I pointed out that I was not entitled to claim for this under the PBS (Pharmaceutical Benefit Scheme) as it was only available for men with failed chemotherapy. So it would cost me $4,000 per month as opposed to the $60 that DES would cost. It will be interesting to see how things go.

The replacement of the stents did not go quite to plan. I woke up in a ward in the hospital - somewhat surprised to find I was tied down with a catheter and a drip. After all I was meant to be going home in the evening after a simple day surgery procedure. Turned out that there had been a couple of hitches in the procedure. When Dr Tong popped in the following morning with my pictures he showed how the radiation had smoothed off the prostate gland and had created some dead cells - necrotic flesh as he put it. Whilst a desirable effect, this had created a small problem in the removal of the left stent which had become embedded in the necrotic flesh. So he had to cut a bit of that out - which he sent for a path report to see if there are any live cancer cells in it. He called me yesterday to say that there was no sign of any active prostate cancer cells. So it seems the radiation achieved one of our first goals.

So there you are, up to date with all relevant detail. More good news than bad.

UPDATED

May 2014

Well, my May blood panel was like the curates egg - some good some not so good. The good bit was that my Creatinine level was back to normal levels which may be a sign that my kidneys have regained their functionality. Certainly the new stents are a deal more comfortable than the first set, so that may make a difference too.

PSA was up to 20 ng/ml, so that's the third straight rise from the 6.6 ng/ml in December last year. Not good, but the worst number was my Alkaline phosphatase (ALP) levels have shot up from a level of about 75/80 to 153 (Normal Range 35-110). High ALP levels can indicate a number of things, the most germane in my case being either bone metastasis or liver problems. I thought that the increase might be associated with the medication - DES - I began in February. This is metabolised by the liver and carries a warning that there may be problems with the liver in some cases, but as Lionel Lim, my oncologist pointed out, the rest of the liver functions were normal, so it was likely that bone metastases were the culprits.

So, off for another nuclear bone scan. I really dislike the idea of being injected with radioactive material, but that was really the only option at this stage to try and gauge what is going on. The answer was - quite a lot. The "Overall Impression" as recorded in the report on the scan is "Multiple osteoblastic metastases involving the pelvis bilaterally, lumbar spine and ribs bilaterally." So definitely time to move on to the next stage.

Another meeting with Lionel to review the scan and other results and as I expected the options were basically Zytiga (still not approved for PBS and so very expensive); chemotherapy, which I still am very wary of; or signing up for the PLATO study for Enzalutamide (marketed as Xtandi and formerly known as MDV3100). There are two arms - one for localized metastasis - that's me for sure - and the other for distant metastasis - hence the bone scan. I seem to fit all the other criteria so thought I'd go for it. If I fail to respond to the Xtandi I'll go into the other arm testing Zytiga and get that at no cost. I said to Anthea I didn't know if I wanted to be a guinea pig but she pointed out I'd chosen the experimental path in 1996 so nothing new then. What made this study more attractive than others is that there is no placebo arm. As the study says:

"Everyone gets open-label enzalutamide up-front. On PSA progression they are randomised to:

· Continue on enzalutamide and add abiraterone and prednisone; or

· Cease enzalutamide (ie they get placebo) and add abiraterone and prednisone"

I saw the Professor running the study here - they are aiming to enrol ten men locally out of a total of 500 worldwide - and provided my next PSA, to be taken four weeks after stopping DES is up again, I'll be accepted. Had to laugh after he had given me his through medical examination when he agreed that despite my having three life threatening issues to deal with I was in pretty good condition for a man of 72. Ironically I have been feeling better this last week than I have been feeling for months – maybe because I stopped the DES!

Will let you know how the study goes.

UPDATED

July 2014

I have been very slack in making a decent update, and am now a little weak and preoccupied. The actual process of getting final acceptances was convoluted with more tests, more scans, each revealing a position somewhat less better than the last. Believe me even a quiet old GS 5 or 6 can get a mighty move on.

But I finally got my medications and started on a complex of pills compilation. I felt pretty reasonable in the two weeks leading up to the final kick-off BUT the pain was increasing. The Study Onco we saw said this was completely unacceptable "NO PAIN!!". More pills and patches, great for pain management, but with a variety of side effects, mainly lowly constipation. Started, FINALLY, on July 10 I was away, but had to face two fortnightly hurdles of blood draws, the first of which showed an increased in Calcium levels. During this time my condition has been deteriorating along the lines set out in THE ELEPHANT IN THE ROOM and I am pretty frail. The Calcium increase led to my dropping out of the Study, and drips of NaCl to clear out the Ca (plus more pills of course) I demanded to be released from the hospital yesterday because my brother arrived here from Cape Town South Africa.

So, that's it now. Chemotherapy is really my only choice now and I think I would rather just go quietly into the night. Lasting as long as my organs do - all blood results are now "normal" :-) We shall see what the good Dr Lim says this week.

If this is my last entry, it's been great knowing you all. Keep up the good fight!

UPDATED

August 2014

Sadly, we received the following message from Terry's wife, Anthea:

We have just returned from the Hospice where Ter passed away peacefully a few hours ago -- 8:30pm August 6. We had been with him all day and his breathing was very labored and we all knew that it would not be long before he left us but although we had been expecting it, it is still unbelievable. He was in a very caring atmosphere with a lovely nurse who had been looking after him for the past week but his condition deteriorated rapidly yesterday. We know that he is now at peace with no more suffering but it's still a huge burden to deal with. Many thanks for all the loving wishes you have sent us.


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