PROSTATE CANCER
ACTIVE SURVEILLANCE
WATCHFUL WAITING
THIS IS MY PERSONAL HISTORY
I was diagnosed with Prostate Cancer in August of 1996. 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.
Heading for the tenth anniversary of my diagnosis, 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.
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 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.
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. 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. 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 uses conventional medicine where he believes it is required but also uses 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.
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%.
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. 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 [5 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 lasat 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 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. This created a bit of a quandary, as we were off to the island of St Helena on a cruise (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. 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. 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 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. Given that, my plan was to 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. That plan may have to change now.
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.
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' wihint days who had a odubling 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. which would be testing the worst case scenario first and which would 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. It has no airport so the only way to get there is by sea - seven days each way, with another week on the island. 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 are 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-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.
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 makes my expiration date about ten years from now!!
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 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?
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 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've booked on the best cruise I have ever seen - right around the Pacific Rim from Sydney to Sydney - 75 DAYS!! - next July
So that's my story to date. I am still content with my decision to choose not to have conventional treatment. That choice is not for everyone. In some cases the diagnosis is not suitable, in others the man is not equipped psychologically to handle what is seen as the uncertainty of not taking immediate action, especially as there is so little support for this choice. But what many men who choose conventional treatment over conservative management do not seem to realise is that everyone diagnosed with the disease will have to practice some form of "watchful waiting" because no current conventional treatment guarantees a cure. That means the uncertainly associated with the possibility of progression is present in us all, not matter what our choice of treatment. Those who choose conservative management do however avoid the only certainty connected with this disease - the certainty of side effects associated with all current conventional treatment.
As I said at the time I made my conservative management decision, I aimed to make it to the first fence of 10 years, and I did that in August last year. But I felt I would really only know if the decision was the best one for me 20 years after diagnosis. I'm over half way there!! It also 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.MELBOURNE, 20 JULY 2007
