PROSTATE CANCER WATCHFUL WAITING

MY PERSONAL PSA HISTORY

Every man diagnosed with the disease is likely to continue having PSA tests for the rest of his life. There is an expression "PSA anxiety" in the prostate cancer world that sums up in a short phrase all the concern, worry, fear, apprehension, alarm, distress, unease, trepidation and dread that is associated with these ongoing tests. All too often a slight increase will escalate the decision to treat or re-treat on the assumption that the disease is spreading or recurring.

It has always been a concern of mine that men may make these decisions too soon. After all, there is ample evidence of the variability of PSA results (see PSA 101 and the articles in Clippings if you have not read them already) so care should be taken to make sure that there is evidence of a continuous rise before any action is taken.

There was considerable discussion on the PHML mailing list in 2001 about potential causes of variance in PSA levels. It was a suggested that there might be circadian (daily) as well as circa lunar (monthly) fluctuations. We could find no research on the subject so decided to run a small experiment, with two of us as guinea pigs. I volunteered to test the circa lunar theory by having 28 daily successive tests: another man volunteered to have tests every six hours for three days, although he didn't in fact go ahead with this in the end. We had a quick fundraiser on the List to pay for my tests and away I went.

I had my blood drawn at noon each day and did what I could to stabilise the results by trying to follow exactly the same daily routine as far as sleep, food and exercise were concerned. I kept detailed records of all I did in case I could find any correlation between these activities and any variance in the results.

I have tabulated the results of the experiment below. The first week showed very little variance, but after that there were some considerable changes, the largest of which occurred between days 15 and 18, when there was an increase of 33%, from 4.50 ng/ml to 6.00 ng/ml. This was followed by an almost equivalent drop back to 4.60 ng/ml on day 22 - quite a week, and one which illustrates so clearly the importance of getting a series of tests done. I have highlighted these large changes in the chart.

 

RESULTS OF 28 DAY PSA EXPERIMENT
Sequence
PSA
% Inc/Dec
Sequence
PSA
% Inc/Dec
#1/28
4.90
#15/28
4.50
-16%
#2/28
5.00
+2%
#16/28
5.30
+18%
#3/28
4.90
-2%
#17/28
5.00
-6%
#4/48
5.00
+2%
#18/48
6.00
+20%
#5/28
4.90
-2%
#19/28
6.00
0
#6/28
5.00
+2%
#20/28
5.60
-7%
#7/28
5.00
0
#21/28
5.00
-11%
#8/28
4.90
-2%
#22/28
4.60
-8%
#9/28
4.70
-4%
#23/28
4.60
0
#10/48
5.20
+11%
#24/48
5.20
+13%
#11/28
5.00
-4%
#25/28
5.50
+6%
#12/28
4.70
-6%
#26/28
5.30
-4%
#13/28
5.00
+6%
#27/28
5.40
+2%
#14/28
4.80
-4%
#28/28
5.20
-4%
Median
5.00 ng/ml
Average
5.08 ng/ml

Figure 1 - Results of 28 day PSA experiment

The variance shown by these results is illustrated clearly in the chart below

Figure 2 - Chart of results of 28 day PSA experiment

There was some discussion about this experiment and one of the medical men on the List had this to say:

"Day-to-day as well as monthly fluctuations of some biological parameters are a fact are reported on salivary testosterone and cortisol, among others. It seems that a number of interacting factors would trigger similar fluctuations on blood PSA. Your experiment would tend to prove, rather than disprove, the value of PSA testing, as your results fluctuated within a relatively limited range. It would point out, however, to the advisability of repeat tests in borderline situations."

Note the comment that the range of the PSA numbers - from 4.50 ng/ml to 6.00 ng/ml - is regarded as relatively limited. This should be borne in mind for those marginal increases that cause so much bother to some men.

In 2007, one of the members of the PPML Mailing List analysed the figures in a different way and it may be of interest to see his take, which is on The Palpable Prostate blog at PSA Variation

Another issue that comes out of these figures is the question of PSA velocity, or doubling time. There are studies that relate speed of increase in PSA to aggressiveness and progression of disease, despite the fact that PSA is not prostate cancer specific. A doubling time measure in weeks or months is regarded as very dangerous, while a doubling time measure in years is regarded as somewhat better. It is also said that an annual increase greater than 0.75 ng/ml is cause for concern.

An increase, as my tests in this experiment showed, from 4.50 ng/ml to 6.00 ng/ml in three days indicates an estimated doubling time of only 9 days and would also represent an increase double that regarded as 'safe' for an annual increase, let alone one over three days.. Looking at all the figures in this experiment and using them to calculate a doubling time, produced an estimate of 229 days - a little under 8 months. Somewhat better than 9 days but still dangerously rapid and a clear call to action.

Yet my PSA did not double in 9 days. It did not double in 229 days. It is now December 2003. In the two years plus since this experiment, my PSA has gone from the median of 5.00 ng/ml at that time to 6.25 ng/ml at September this year, well within the 'safe' figure of 0.75 ng/ml per annum. I am glad I did not let myself be panicked into precipitate action which may well have proved to be unnecessary.

To complete the picture, I have set out below my PSA numbers since I was diagnosed, together with the chart plotting these numbers and below that my estimated doubling time, which at September 2003 was 11.67 years. There is an upward trend, that is true, but then I am not getting any younger and presumably the BPH I was diagnosed with in 1992 is still there!!

 

Date
PSA
free PSA
fPSA %
Aug 96
7.20
Oct 96
4.60
Jan 97
4.70
Sept 97
3.30
Dec 97
4.73
1.09
23%
Feb 99
4.35
1.83
42%
Jan 00
5.70
1.54
27%
Sept 01
5.74
2.76
48%
Sept 02
5.88
2.21
38%
Sept 03
6.23
2.38
38%

Figure 3 - PSA readings August 1996 - September 2003

Figure 4- Chart of PSA readings August 1996 - September 2003

Figure 5 - Estimated Doubling time based on data from diagnosis

In January of 2004 I started having more and more problems with urination, especially nocturia. It was impacting on my quality of life. By May on very bad nights I was waking every half an hour or twenty minutes. I finally decided that I needed to atke some more positive action and after having my PSA test done I reluctantly went to see the urologist. Unsurprisngly, my PSA was up a little from the previous year at 8.35 ng/ml, although the free PSA was also elevated - up to 42%. The reason for that became clear when I had an ultrasound done on the gland. There was a substantial growth in the central zone, which had grown up into the bladder. There had been very little lateral growth in the preipheral zones, which is why the DRE did not indicate such a large gland. I duly had the TURP(Transurethral Resection of the Prostate) procedure, which appears to have been a success - it was three weeks ago at the time of writing this update.

I had my first post procedure PSA in September 2004. I expected the reading to be a good deal lower than those in the past, but it wasn't. It came in at 7.54 ng/ml, a little lower than June, with a fPSA of 41%. The urologist said this might be an after effect of the surgery, as I was still passing blood clots.

My next test, in January 2005 was something of a shock as it came in at 14.72 ng/ml with a fPSA of 28%. I double checked this and after discussion with my urologist decided to treat with an antibiotic in case there was some infection. This seems not to be the case as the subsequent reading on 19 April 2005 was 17.44 ng/ml with a fPSA of 28%. Another test three months later and another rise - to Jul-24.99 ng/ml with a fPSA of 6.47 ng/ml - 26%. Things really got busy for me then as we re-located from South Africa to Australia. When I surfaced from that, found a doctor and had a PSA test, it came in at 26.80 ng/ml with a fPSA of 6.70 ng/ml, still high at 25%.

My attention was somewhat distracted when I had congestive heart failure in January of 2006, but once that was under control, Ihad another PSA test that came in at 17.4 ng/ml, with a fPSA of 4.0 - 23%. That's pretty close to what it was in April last year. Why the drop? Maybe a coincidence; maybe the antibiotics that I had to take for the dental work; maybe the effect of the medication for my heart condition; whatever the reason, I'll take a falling PSA against a rising PSA any time.

Back up again in June 2006 - to almost the same level as July 2005 at 24.3 ng/ml. So the roller coaster continues. Regrettably, although a Free PSA test was ordered, the lab did not do it. My new MD didn't notice and, as he freely admits that he knows nothing about fPSA, he didn't agree to getting another test done just yet, so I just had wait until August when it was 27.4 ng/ml. So, anyway, no dramatic change = no dramatic change in protocol. More doing what I had been doing - and concentrating on getting the heart right. I celebrated the first of my major targets this month - 10 years of survival post diagnosis. Ring them bells!

October 2006 saw another increase - to 31.4 ng/ml, although in February 2007 it was back down to 30.9 ng/ml. But in between those two dates I had a scare because I developed a very bad pain in my back (which later disappeared, never to return). But that prompted me to have the bone scan i was planning on having a little later in the year as part of my ongpoping surveillance. 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 believed, as do I, that the treatment of symptomatic disease is more important than pre-empting a potential problem that may not arise.

April 2007 was 30.4 ng/ml again and in due course i went for the second bone scan. The radiologist said that there was an increase in the lesion and in May 2007 there was another increase in my PSA, which was now 34.0 ng/ml. By June it was 42.0 ng/ml and i decided the time had come for some treatment.

The oncologist and I agreed to going down the road of hormone therapy - ADT (Androgen Deptrivation Therapy) and I had my first three month depot of Zoladex in August 2007. The results have been satisfactory so far with a steady drop in PSA - Aug-07 12.50 ng/ml; Oct-07 3.00 ng/ml; Nov-07 1.20 ng/ml; Dec-07 1.70 ng/ml; Jan-08 0.60 ng/ml; Feb-08 0.20. The chart below shows tghe whole picture!!

Hopefully the next PSA will be undetectable and I can stop the hormone therapy to see what happens then!!

 

MELBOURNE, FEBRUARY 2008

 

 

RATIONALE: PSA 101: MY EXPERIENCE: ACTIVE SURVEILLANCE : OBJECTIFIED OBSERVATION: CLIPPINGS