Terry Herbert



Personalien und Diagnosen

Personalien

Sichtbarer Name: Terry Herbert
Land: Australia
Bundesland/Kanton: Victoria
Geburtsjahr: 1942
Alter: 72
Beruf: Retired
Hobbys: Prostate cancer, travel, photography, reading
Meine Homepage: www.yananow.org

Daten bei Erstdiagnose

Datum: 12.08.1996
Alter bei Diagnose: 54
PSA: 7.20
Biopsiert? Ja
TUR-P? Nein
Gleason Score: 3 + 4 = 7a
TNM-Diagnose: T2b N0 M0
Bemerkung: Three second opinions on Gleason gave scores of 5 and 6. Second opinions of staging were T1c and T3.

Maximal gemessenes Prostatavolumen

Datum: 12.06.2004
PSA: 8.55
Volumen in ml oder cm³: 184ml

Postoperative pathologische Daten

Datum:
Gleason Score:
pTNM-Befund:
Schnittränder:
p-L-V-P-G-Befunde:
Siehe Bericht vom:

Ruhe in Frieden!

Gestorben: 6th of August 2014

Prostatakrebs - Behandlungen

** PSA-Wert zu Beginn der Behandlung
von bis PSA** Art Klinik Ort
12.08.96 21.07.11 7.20 Active Surveillance n/a Cape Town/Melbourne
10.06.04 8.55 TUR-P Cape Town
01.05.07 01.05.08 0.17 HB 1-fach n/a Melbourne
31.05.10 08.12.11 7.10 HB 1-fach n/a Melbourne
08.12.11 08.10.12 15.50 HB 2-fach Melbourne
08.10.12 30.11.12 13.40 HB 1-fach Melbourne
01.12.12 18.10 Active Surveillance



Medikamente

NEM = Nahrungsergänzungsmittel
von bis Medikament + NEM Menge / Zeiteinheit
01.05.07 01.05.08 Zoladex 10.8 gm every three months
31.05.10 30.11.12 Zoladex 10.8 gm every three months
08.12.11 08.10.12 Casodex 10 mg Daily
Menge pro T/W/M/J etc.


PSA-Verlauf    ng/ml    logarithmisch

PSA-Verlauf    ng/ml    linear

Testosterone    nmol/L

Testosterone    nmol/L

PSA-Verdoppelungszeiten in Jahren

Verdoppelungszeit ist zur Vorperiode gestiegen.
Verdoppelungszeit ist zur Vorperiode gesunken.
* Berechnet auf 1, 2, 4 und 8 Perioden rückwärts.

Grenzwert = 3 Jahre


Berechnung der Verdoppelungszeit in Tagen

Verdoppelungszeit in Jahren:
Verdoppelungszeit in Tagen:
Datum PSA 1* 2* 4* 8*
07.08.96 7.20
07.10.96 4.60 --
01.01.97 4.70 7.60 --
01.09.97 3.30 -- --
01.12.97 4.73 0.48 99.69 --
01.02.99 4.35 -- 3.56 --
01.01.00 5.70 2.35 7.75 10.78
01.09.01 5.74 165.37 6.46 5.01
01.09.02 5.88 28.76 59.49 15.14 --
01.09.03 6.23 11.99 16.92 8.84 15.78
01.06.04 8.55 1.64 3.24 7.55 8.59
01.09.04 7.54 -- 3.64 7.63 5.88
01.01.05 14.72 0.35 0.75 1.77 4.33
07.01.05 12.99 -- 0.45 1.28 3.76
01.04.05 17.44 0.54 1.01 0.81 3.26
01.05.05 20.05 0.41 0.50 0.47 2.03
01.07.05 24.99 0.53 0.48 0.65 1.36
01.12.05 26.80 4.16 1.40 0.86 1.07
01.03.06 17.40 -- -- -- 1.71
01.05.06 24.40 0.34 -- 3.53 0.98
01.08.06 28.40 1.15 0.59 5.88 1.67
01.10.06 31.40 1.15 1.15 3.64 1.36
01.02.07 30.90 -- 4.14 1.11 2.23
01.04.07 30.40 -- -- 2.89 3.19
01.05.07 35.00 0.40 1.36 2.48 3.77
01.06.07 42.00 0.32 0.36 1.59 2.31
01.08.07 12.50 -- -- -- --
Datum PSA 1* 2* 4* 8*
01.10.07 3.00 -- -- -- --
01.11.07 1.20 -- -- -- --
01.12.07 1.70 0.16 -- -- --
01.01.08 0.60 -- -- -- --
01.02.08 0.20 -- -- -- --
01.08.08 0.17 -- -- -- --
01.11.08 0.25 0.45 2.33 -- --
01.03.09 0.36 0.62 0.54 -- --
01.06.09 1.20 0.15 0.26 0.52 --
01.09.09 2.20 0.29 0.19 0.29 2.10
01.01.10 5.20 0.27 0.28 0.27 1.29
01.04.10 8.20 0.38 0.31 0.24 0.60
01.08.10 2.30 -- -- 1.24 0.71
01.11.10 2.10 -- -- -- 0.62
01.02.11 2.90 0.54 1.51 -- 0.64
01.03.11 3.40 0.33 0.47 -- 0.62
25.08.11 7.10 0.46 0.43 0.66 0.87
25.11.11 15.50 0.22 0.34 0.37 0.79
05.01.12 6.40 -- -- 0.81 6.71
05.02.12 5.80 -- -- 1.21 --
25.04.12 5.90 8.88 -- -- 1.28
31.07.12 8.70 0.47 0.83 -- 0.85
23.10.12 13.40 0.37 0.42 0.75 0.78
20.11.12 18.10 0.18 0.29 0.48 0.72
23.05.13 38.80 0.46 0.38 0.40 0.71
25.06.13 41.10 1.09 0.50 0.40 1.13
25.07.13 42.00 2.63 1.51 0.46 0.57

Mein Bericht

Übersetzen auf:
Deutsch    
Französisch    
Spanisch    

Datum Δ 

letzter PSA vom

Erfahrungsberichte

       
08.03.2011 3.40 01.03.11
I was diagnosed with Prostate Cancer in August of 1996. My wife Anthea and I were living in Kalk Bay, just outside Cape Town in South Africa. I was 54 years old, said to be young for such a diagnosis, understandably, since the median age for diagnosis is over 70 years of age in most countries, although heading towards the mid-60s in the USA.

Heading for the sixteenth anniversary of my diagnosis, next month it seems appropriate to record how and why I came to the conclusion that the recommendations made by specialist doctors in South Africa and the United States of America should not be acted on. And the outcome of the decisions made then.

I had been diagnosed with BPH (Benign Prostatic Hyperplasia) in 1992, when we were living in Australia. We returned to South Africa in late 1995. In August of 1996 I developed considerable urinary problems, both as to frequency and urgency for which I saw a doctor on 7 August 1996.

The doctor examined me thoroughly, including a DRE (Digital Rectal Examination) and then drew blood for a PSA test. Two days later, he called me to say that my PSA was 7.2 ng/ml and he thought I should see a specialist urologist.

Looking back now, I am fairly certain that I had a form of prostatitis triggered by an overload of fat intake. I believe that, had the doctor been better informed, he would have suggested a course of antibiotics, my PSA would have dropped and I would not have been diagnosed with prostate cancer at that time.

My wife and I saw a urologist the following Monday - 12 August. Another DRE produced a verdict that he could "feel something" and a date with the radiologist for a TRUS (Trans rectal ultrasound) and a six needle biopsy two days later. The biopsy was positive and I was sent for X-rays, CAT scans and bone scans. I asked for a second opinion on the biopsy results and briefly discussed treatment options. The urologist said that, provided there was no evidence of spread beyond the capsule, I would have surgery which would cure the disease and assured us that side effects were minimal and that with modern techniques potency rates of "up to 90%" had been reported.

We went back for a second appointment with the urologist. He told us that the second opinion on the biopsy had shown a lower Gleason score (2+3=5) and summarised the other test results - all were negative. He confirmed that it would be best for me to have a RP (Radical Prostatectomy) after my return from a planned business trip to Australia.

By now I had learned enough to know that prostate cancer was not normally a rapidly progressing disease and that I had time to do a good deal more research. Convinced that I was not about to die in the immediate future, I headed off to Australia with a heap of reading material and plenty of time to absorb it. I returned with a good deal more knowledge and two specific points. The first was to have a MRI scan. The second was that it made much more sense to try and manage the cause of the disease itself rather than tackling the symptoms that my diagnosis represented.

I had my second PSA test. It was down to 4.6 ng/ml from the initial 7.2 ng/ml.

The news was not good so good from the MRI scan. The radiologist who conducted the scan staged the disease as T3. The oncologist I consulted felt was not correct - he would not have diagnosed anything but T1c from the absence of anything abnormal in the gland. He said that as far as he was concerned, Watchful Waiting for some months would not present any significant problems.

We had started to change our diet some time before, but half-heartedly. Now we cut out red meat, dairy, coffee and alcohol - I really missed my red wine and liqueurs after dinner parties! I began to exercise regularly - we live on the side of a mountain, so walking is easy and very healthy. I also started taking various supplements, notably Essiac and Saw Palmetto, plus Vitamin C, anti-oxidants and other vitamins. Each morning I took our dogs out for an hour on the mountain followed by laps in the tidal pool at the bottom of our street. Because I think visualisation is a very powerful technique I imagined that my body was as badly overgrown and full of weeds as the garden was and as I started getting the garden in order, I visualised my body getting into better condition too. I went along to yoga relaxation classes where an extraordinary teacher seemed to divine my problem and gave me exercises that she said would help.

In January I had another PSA result - 4.7 ng/ml only 0.1 ng/ml up on the last one. At this stage I had no idea that PSA was not prostate cancer specific nor did I know that it is not an accurate tests, with results varying considerably for no identified reason.

A friend of the family who has a radiography practice in the US offered to do a full series of scans for me, and to introduce me to the senior people at a major institution, a centre of excellence, free of charge provided I could get to him. We did this in March of 1997.

The MRI scans were very thorough and included an endo-rectal coil. The institution's pathologist reviewed my biopsy slides - the Gleason was up-graded to 3+4=7. I found out later that the slides they returned to me were not mine. My slides could not be found, so I have always treated the grading with some suspicion, but have used them as a 'worst case' position. I was introduced to an oncologist, radiologist and a surgeon. All of these men were very pleasant people, who gave me a thorough examination, avoided contentious issues and recommended the gold standard of surgery. I was, and am still, very grateful for the time all these men gave us. But none of them could tell me why I was wrong to continue Watchful Waiting or, as I thought of it, Conservative Management - now termed Active Surveillance. The surgeon urologist warned me that I was taking my life into my hands by not having immediate treatment - he was shocked that I had waited so long (all of 7 months) before taking any action.

Back home again, I had an appointment with the oncologist to review the information from the US. We discussed treatment options again and he said that although his inclination would be to treat me, he could not argue against my proposed non-conventional approach.

I also consulted a fully qualified medical doctor who used conventional medicine where he believed it was required but also used complementary and alternative medicine where appropriate. He endorsed my plan of attack, suggesting some options if there were any signs of failure. He was also able to show me some medical references to spontaneous remission of prostate cancer, an issue denied by most doctors.

In September, soon after the first anniversary of my diagnosis, I had my next PSA test - six months after the last one. I was very surprised to find that it had dropped right back to 3.3 ng/ml. I realised that this may have been because I was taking regular and high doses of Essiac and Saw Palmetto at that time. I eased back on both of these items and had a further PSA test 3 months later in December 1997. This came in at 4.73 ng/ml - virtually identical to the one eleven months prior. Free PSA tests were available by that time and my free PSA was 23%. These rersults were all indicators that the 'elevated' PSA level on diagnosis and subsequently was most likely caused by causes other than prostate cancer.

My next test was somewhat more than a year later at the end of February 1999, when I had a slightly lower PSA of 4.35 ng/ml but a free PSA of 42%. The results in January of 2000 weren't quite as good as they had been a year before. Total PSA was 5.7 ng/ml and free PSA 27%.

I had intended to have another PSA test in June of 2000, to see if the numbers had changed at all, but by then I had volunteered for a small experiment, funded by the generous folk on Don Cooley's PHML list - and excellent Internet Forum now closed. For this experiment, I had blood taken on 28 consecutive days. The draw was at the same time each day and I tried to neutralise any outside influence by following follow the same diet and exercise each day for the period, getting the same amount of sleep and so on.

Initially there was little fluctuation - the first week's readings alternated between 4.90 ng/ml and 5.00 ng/ml - but by the third week they were quite startling. On day 15 the reading was 4.50 ng/ml. By day 18 it was 6.00 ng/ml as it was on day 19. By day 22 it was back almost to where it started at 4.60 ng/ml. Overall, the average reading was 5.08 ng/ml with a median slightly lower at 5.00 ng/ml. Although the funds for the experiment did not stretch to free PSA readings, the laboratory had supplied some. They ranged from 30% - 36% with a median and average of 31%. The doubling time calculated from the full 28 day result was calculated at 229 days.

This forecast proved to be incorrect - in September 2001 my PSA was 5.74 ng/ml with a Free PSA of 48%. Anthea was concerned that I had not seen a doctor for the best part of four years and so I made an appointment for later in the month with man reputed to be the best urologist in Cape Town. I took along my entire medical history, but asked him if he would be prepared to examine me prior to reading this as I wanted his unbiased opinion. He agreed to this. He said that my gland felt normal and a little large. He was very impressed with the high free PSA result and said that I should have an annual check up since I was now 60. I thanked him and gave him a resume of my earlier diagnosis and the relevant medical reports, which he read with interest. Our meeting concluded with his saying that I should continue with my current regimen as that seemed to be doing the trick.

My PSA in September 2002 came in at 5.88 ng/ml and 38% fPSA and in September 2003 figures were 6.25 ng/ml with that fPSA still hanging in at 38%.The estimated doubling time using all my data to date was 11.4 years.

We went off to the US [driving for five weeks and 5,000 miles] soon after my September 2003 tests and the BPH (Benign Prostate Hyperplasia) with which I was diagnosed in 1992 started playing up. 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 in the previous year, apart from the American trip 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 Active Surveillance and trying to change your ways - 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 (distrubed sleep from frequent trips to urinate) and finally swallowed my pride and went to see my urologist, who suggested we try Flomax, a drug that seems to help in some cases. 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. This created a bit of a quandary, as we were off to the island of St Helena on a business trip (there is no airport, so the trip is 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 on the ship and on the island.

The urologist 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 (Digital Rectal Exminations) I had been having. My PSA also showed an increase, going up to 8.55 ng/ml, although there was still a free PSA of 42%. So I bit the bullet and agreed to a TURP (Transurethral Resection of the Prostate), which I had on June 10, 2004. Everything seemed to go 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. The histology report basically stated that the Gleason Scores on the tissue examined was 3+3=6 (which was my original diagnosis) and there was about 20% of the material from the TURP that contained evidence of invasive primary adenocarcinoma.

It seemed to me that this showed evidence of some growth over the years, since the volume was probably higher than it had been, but no evidence of increasing aggressiveness. This is also a feature of the Active Surveillance studies currently being undertaken (which had not started when I was making my decisions); most of the men in the studies haves no evidence of increased aggression as the years go by. In fact in about 25% of cases subsequent biopsy procedures are negative - no cancer cells are found. Given the biopsy results, my plan was to continue what I had 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.

My PSA results post TURP were disappointing. The first was in September 2004. 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.

I noticed on the second of these tests that the assay method used was not the same for previous tests. I spoke to the haematologist at the laboratory and he confirmed that they had changed protocols (soon after my September result, as it turned out) but, so he said, they had ironed out the initial teething problems and results from the new method were comparable with the old. However, his confidence in this statement was somewhat undermined when he told me that I was the second 'customer' within days who had a doubling of PSA results. What a coincidence indeed!!

Just to double check the following month I had a third PSA and, the same day, had the test done by a different laboratory. The results differed, naturally, but were similar at 12.30 ng/ml with a fPSA of 28% and 13.17 ng/ml with fPSA of 34%.

This left me in something of a quandry. I saw my urologist and asked him to prescribe a course of antibiotics, on the basis that there might be some infection from the surgery the previous year. After all, there were small bits of prostate gland coming out with my urine for some months after the TURP. I thought that one of those lodged in the gland might be causing a problem. I completed the course of antibiotic and had my PSA tested again on 19 April. It came in at 17.44 ng/ml with a fPSA of 28%.

The May PSA came in a little higher than April at 20.44 ng/ml, but again with a high fPSA of 29%. That was my trigger to see an oncologist. His recommendation was to have another bone scan to test for metastasis. This would be testing the worst case scenario first and might confirm that my primary treatment had failed. I had the scan at the end of May - great improvement 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.

June and July were very busy months for us. I had to go to the island of St Helena on my annual business trip. No sooner were we back from that than we were off to Australia for our granddaughter's first birthday and to buy a house, as we were moving back there to be closer to our son's family as it grows.

My next PSA was like the curate's egg. The total PSA was up again - to 24.9 ng/ml now, with a free PSA of 6.47 ng/ml (26%). That certainly was not good news, but at least it wasn't as high as I feared it might be. The oncologist felt the next step should be a CAT scan, even though these are not great at identifying tumours. I aimed to see him within the next following week or two to discuss that and my preferred treatment option - 'DES Lite', but when I came to make an appointment he had gone to an overseas convention.

Incidentally, 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-embolic 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 - which also, incidentally produce some serious long term side effects affecting the heart and pancreas.

After completing the move to Australia I finally saw a urologist and an oncologist in December 2005 after getting a PSA test - result 26.5 ng/ml with a free PSA of 25% - virtually the same as in August. Unfortunately the oncologist was 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 was 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 was '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 would make my expiration date about ten years from then - 2015!!

With that in mind, I was still intending to see a medical oncologist when I had a congestive heart failure in January 2006, which put the prostate cancer issue on hold for a while. Initially I thought that maybe that wasn't a bad thing, because, once the heart condiion was under control, I went back to my GP for another PSA test which came in at 17.4 ng/ml with a fPSA of 4.00 ng/ml for 23%. BUT the next test in June was back up again, almost to the level it was in July the previous year - 24.3 ng/ml. Unfortunately the lab did not do the free PSA test although one was ordered. My MD and I agreed to keep an eye on things!!

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 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 exacerbated 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 still 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 agreed to have another scan in three or four months and if there was a significant change, we might consider some form of ADT (Androgen Deprivation Therapy). Essentially he believed, 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?

Well, we went off on our 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.

It took a while to get the second bone scan. I really don't like nuclear medicine - the thought of ingesting radioactive material just isn't one I fancy. 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 felt that it certainly seemed likely to be a metastasis and most probably accounts for the rise in PSA - which had doubled since May 2005 - and I reckoned that was most likely so. He suggested that I spoke to a radiologist about the wisdom of radiating this lesion before we consider ADT (Androgen Deprivation Therapy). The onco suggest a specific 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 left me with the hormone therapy and since I found, after talking to a number of local doctors that there is no way I was able to have my preferred option of diethylstilboestrol (DES) or estradiol patches, I just had 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 was what particularly concerned me. I saw my cardiologist tomorrow to see what he had to say about any potential problems with my heart medication. The oncologist said "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!! - July 2008. Well, we didn't make the cruise - the collapse of the global financial markets put the kybosh on that, absorbing some of our funds and, 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 had no serious side effects that I could notice. A bit of a tendency towards a feeling of sadness at times perhaps, but that's about it.

Three weeks or so after the first Zoladex shot in May 2007, my PSA showed a very satisfactory drop from 42.0 ng/ml to 12.4 ng/ml in August 2007 and the second PSA test, two months later had the PSA at 3.00 ng/ml.

I had my second Zoladex shot, which stung a bit more than the first - maybe because I'd gone on a full scale weight loss program and was down 20 kg (say 44 lbs or a bit over 3 stone depending on your place of residence) so there wasn'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 were very satisfactory - 0.60 ng/ml.

I was a bit disappointed with the next PSA, which is still on 0.20 ng/m. I really thought I might get down to undetectable. My GP felt it was better to have another Zoladex shot so I did that in May 2008. I was having some slight side effects developing at the time. I was losing body hair, my skin was softer and I was having difficulty in maintaining my weight. I was concerned that the third shot might make it worse, but it didn't, and almost 12 years to the day of my original diagnosis, 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 a good result. And how ridiculous to be happy that it is lower than the last one, given the inaccuracy of the test. But I was. I thought it was probably as low as it was going to go, bearing in mind I still have most of a very large prostate gland. I felt it was good enough to go Intermittent - and that's what I told my GP in August 2008. Even though he disagreed, Anthea and I had a good chat about the options and believed this was a good one for us.

Because we had to can our planned cruise in July we decided instead to go to Italy in September, 2008. The son of old friends was getting married then so the idea was to go to the wedding then spend a couple of weeks just driving around wherever the road took us. We had a wonderful time. Drove 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 on my FaceBook page.

My first PSA test when we got back was 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 120 gm - roughly five 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.

PSA was up a tad at 0.36 ng/ml in March 2009 - much lower than I thought it might be. I didn't get too anxious, but the thought of what I might do if there is a big jump does come to the forefront of my mind. I had all my other annual checks too and there was good news on the heart front too. The cardiologist pronounced himself happy with what he could hear.

Although I intended waiting for six months for my next PSA test, my GP wanted me to have one at three months. So in June it was up again, now to 1.20 ng/ml, the same level as it was in November 2007. That didn't stop us heading 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 in 2009 but the death of a friend who had PCa highlighted yet again the importance of today rather than tomorrow, even though I'm still aiming for 20 years plus. We had a great trip to South Africa - many parties, much laughter. I think as we all get older - most of our pals are in their 70s or pushing 70 - we realise that we have a finite number of years left to celebrate.

Had another 3 monthly test in September 2009 as requested by my MD - up again to 2.2 ng/ml. At this level the lab also gave me a free PSA level [the rules have since changed] which was 28.6%. We agreed - no change in treatment then but January 2010 result of 5.2 ng/ml, 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 had an intact gland - and a very large one at that, measured at over 120 gm last time that was done. This must generate 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 wasn't too happy with that, but ..he's not the specialist. We agreed to have another test in April, 2010 which I did and that was 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 showed an increasing slope and a shortening doubling time so I thought it was 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 took another trip. This time to the North-West Pacific Coast of the USA. After a flying visit to Las Vegas (just to say we've been there) and the Grand Canyon, we flew up to Seattle to meet up with some long-time pals, picked up an SUV and then wound our way down through Washington State, Oregon and California, staying on the old Highway #1 wherever we could. What a tremendous trip it was and for anyone interested, the pics are on my FaceBook page. That makes it 35 States that we've visited - next trip must be the Mountain States I think - not sure we'll get to the flatter bits - the Prairie States.

Back home again, I took my Zoladex shot like a man - no reaction , thank goodness apart from a drop in PSA to 2.3 ng/ml in the ten weeks after the first shot. Nice speed but not low enough. I had another in August and again in November. Although we thought the US trip was all for 2010, my darling wife found a wonderful offer for a cruise from Amsterdam to Prague with Christmas in Cologne. We always think a White Christmas is something special - and this certainly was. There was more snow in Europe during the early part of December than there had been for forty or more years. Wunderbar. Again pictures on FaceBook for anyone interested

I continued the ADT with Zoladex shots in February and May after PSA results of 2.9 and 3.4 in February and March respectively. I have to say that I was somewhat depressed by the slight rise in the February PSA result and I went back to the oncologist to discuss with him the option of changing from Zoladex to one of the other ADT drugs - or even DES?? He still would not talk about DES and was still of the view that focussing too much on PSA results at the levels. I was talking about was counter-productive. His advice was, as it had been on my initial meetings, to have an annual PSA if I must, but rather wait to see if any symptoms developed and then tackle the disease again.
       
31.08.2011 7.10 25.08.11
Ah well! That's not good news today. My PSA is up again, ironically to about the same level as it was 15 years ago - talk about coming the full circle!!

But it's not quite the same this time: Third consecutive rise in my PSA with a castrate level Testosterone while on Zoladex. What does that little forumla indicate? Most likely AIPC (Androgen Indpendent Prostate Cancer) or as it is now known in some circles CRPC (Castrate Resistant Prostate Cancer).

So......what to do next? Standard practice in the US would be to try another ADT (Androgen Deprivation Therapy) or a combination of those therapies - maybe include DES (diethylstilboestrol)?. But.....my oncologists says "No! Not for discussion. But...how about joining a trial?" Well, no, not really. I greatly admire men who join trials because without them there would be no advance, but there is always a 50% chance that you'd get the placebo and then there is only a small chance that an experimental drug will acutually work, let alone the issue of what side effects might be produced. And since most early trials are about MTD (Maximum Tolerated Dose) rather than MED (Minimum Effective Dose) the risk of side effects is high.

Given these options, I take another - find another oncologist. I'll be seeing him next week and will report back then.
       
05.09.2011 7.10 25.08.11
So glad I decided to change oncologists. I really liked my previous one, but he is a well known expert and as such clearly found it very difficult to engage in discussion with a non-medical person like me. Some of the course of actions I wanted to talk about were simply rejected out of hand †“ diethylstilboestrol (DES) being one.

He simply said there was no possibility of his agreeing to that, studies having shown the ineffectiveness and dangers of that course of action many years ago. In vain I tried to say that more recent studies had showed more value and less danger: that DES was still used in Britain and by some oncologists in the US and other countries. I don†™t know that I will ever get onto DES, but my new oncologist does not dismiss that prospect out of hand.

So…..where to from here? A PSA that has doubled in six months is not the best of news, although it has to be born in mind that I still have a very large gland, intact but for the bits removed in my TURP (Trans Urethral Resection of the Prostate).

We have agreed that after we return from my next trip (I†™m still seizing the day as best and as often as I can!!) we†™ll check on the PSA and if the doubling rate has not slowed at all, why then we might add something to the mix †“ Casodex most likely and move from Intermittent ADT1 to ADT2.
       
12.12.2011 15.50 25.11.11
Well, we got back after a wonderful cruise through the Baltic and the Western Mediterranean and it was back to dental and medical attention.

Teeth seem to be OK now: heart is dong 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 test before my meeting with my new oncologist. That was up again to 15.5 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 inot 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, †œWhat 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 †œprovided 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.
       
12.05.2012 5.90 25.04.12
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.

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.

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.
       
24.11.2012 18.10 20.11.12
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 was 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 †œLeave everything as is for the moment.† And I†™ll probably do just that.

LATER IN JULY

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

†œForget 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).
       
07.12.2012 18.10 20.11.12
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 †œIt 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 my Yana 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 †œonly† 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.
       
04.07.2013 41.10 25.06.13
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 †œno 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?

(to be continued…..)
       
27.07.2013 42.00 25.07.13
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 †œreaming 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.
       
22.08.2013 42.00 25.07.13
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. My urologist, Dr Tong turned out to be a first class man †“ and doctor †“ and we 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 at 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 pathology report you chose) 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 roundt 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.
       

Cookie Policy

By clicking the "Accept" button below, you agree to our Cookie Policy & Privacy

Wenn Sie unten auf "Accept" klicken, erklären Sie sich mit unserer Cookie-Richtlinie und dem Datenschutz einverstanden.