Born in the Illawarra region of Australia in 1947 and married to a most wonderful woman since 1970 with whom I have two, now adult children of whom I am mightily proud.. I had been having my PSA checked as a part of annual routine checkups in 2005, 2006 and 2007. PSA readings in that time were Jan 2005.....2.9, March 2006.........3.2, March 2007.....4.1 (redone 8 weeks later and registered 3.9).
My GP was not overly concerned but thought it might be prudent to see a urologist. The urologist I saw said I was still just within limits for my age, and thought I could either watch the readings over the next 6-12 months or, if I was concerned at the possibility of cancer, he could do a biopsy. I should say at this point I had not the slightest symptom and my general health was excellent. I am not a overly cautious person but I decided to go with the biopsy. This was done under a general anaesthetic...I don't know why as I've found out since that that is not generally the procedure. I should say at this point I really had no experience nor any great knowledge of cancer........both my parents were each one of seven children and I know of only one blood relative in all those aunts and uncles and cousins and their children who had been diagnosed with cancer and that was during the 1950s.
To say it was a shock to be given the results which were positive for adenocarcinoma in 4 of 10 cores with a Gleason Score of 4+3=7 is an understatement. Biopsy pathology also stated no extra-capsular extension nor perineural invasion was evident. I think we all think ourselves somewhat bullet-proof and exempt from the ailments that affect the rest of humanity. Of course my first reaction was "get that out of me" and so the PC journey began.
CT and bone scans did not reveal any obvious spread and with a biopsy report of Gleason 4+3=7 and negative margins to the samples I leant towards radical prostatectomy. A visit to a radiation oncologist who also thought that surgery would probably be the best option given the biopsy results, confirmed my choice of treatment. At this point I began my prostate cancer research and stumbled across the Robotic Laparoscopic method of surgery which it seemed may have less of an impact physically. I mentioned this procedure to my urologist who promptly dismissed it as a money generating scheme for the hospital who had the robot. My urologist stated he only performed open surgery but if I wanted laparoscopic surgery he could arrange for an associate to carry it out and he, (my urologist) could assist.
At this point with his outright dismissal of something he knew relatively little about, together with an anxiousness to be involved in the operation somehow (money?) I became a little disillusioned with him and followed up on a surgeon who used the Da Vinci for his operations. I liked the sound of a quicker surgery and incontinence recovery time and so I had the robotic prostatectomy in St. Vincent's in Sydney on 10th August 2007.
Recovery was fairly quick......out of hospital in 48 hours and lost the catheter after 6 days. I was lightly hitting golf balls after 3 weeks and the incontinence, a real pain in the early days, showed a marked improvement after about 8-12 weeks. Post op pathology upped the Gleason score to 8 and located in both sides of the prostate. There was extensive perineural invasion and one point of focal extension. There was no node nor seminal vesicle involvement and the surgical resection margins were clear. Because of the extent of the cancer within the prostate nerve sparing was not possible. This is where I'm second guessing my decision to go with robotic surgery.
Continuing research after the event has led me to look at the urological department of another hospital (St. George's at Kogarah) who, although they do not use the Da Vinci, do conduct nerve grafting (using nerves from the abdomen or leg) where the nerves are not able to be saved.
When all is said and done I have bounced back very well. Follow up PSAs have so far been excellent, with undetectable results early in October 2007 and undetectable in January 2008. We soldier on!
Another milestone. My last PSA, done at the end of April 2008 came in at < 0.1. Whew! Life at the moment although very good seems to pass in sections related to PSA tests. I guess this will pass as time passes.
On a side note I am at times truly peeved by health professionals. The lab that does my PSA ( I use the same one all the time so that tests are consistent) gives results to only one decimal place. On my GP's last request for the test I had him request an ultra-sensitive result (purely to establish a baseline and for my own information......for example an initial reading of 0.02 followed later by a doubling to 0.04 followed by a doubling to 0.08 to me indicates a trend but all are below 0.1 and would be simply reported as < 0.1). Back came the result to one decimal place. Ignoring the written request, they report to one decimal place because that is what they do. And this is the procedure despite the fact that their testing method produces a result to three decimal places. I am well aware that results at these levels can be inconsistent but I do not see why I should have to fight to get the full information.
Anyway through insistence and pig-headedness I got the full result......< 0.001 totally undetectable. Was that so difficult?
I have struck this inability by health professionals to see past a collection of symptoms (despite their great skills) and actually see a person instead of an illness on more than one occasion and it annoys the hell out of me. O.K.----rant over. The battle continues.
Incidentally, a test kit I used for microscopic blood in the stool (an early indicator for bowel cancer among other things) came back positive. Oh great..... just the news I need, so off we go for a colonoscopy. Thankfully that revealed nothing other than a couple of haemorrhoids which I feel was induced by the original biopsy (maybe incorrectly?) as I always felt something was a little different following that procedure.
Having this disease has forced me to take a more careful look at myself, particularly diet. Since diagnosis in June 2007 I have reformed my diet. Red and processed meats have been virtually eliminated along with dairy foods. Lashings of vegetables and fruit are my mainstay now along with a little chicken in the form of chicken and corn soup (love it) and fish, both fresh and canned as in sardines and red salmon. As for liquids I consume quite a bit of pumpkin soup and tomato soup as well as about 5 cups of green tea a day sweetened with honey and a litre of pomegranate juice daily. My beloved wife is a wonder with those soups. A glass of port a day does not go astray either.
I take a few supplements such as vitamin E, Vitamin C, fish oil and cod liver oil and B group vitamins. Some soy in the form of imitation sausages as well as nuts.
I walk briskly for an hour at least four days a week as well as my weekly game of golf. Now I don't really know if this will have an effect on my PCa prognosis long term but it certainly has had a great effect on my general health. I have lost about 20 kilos (45 lbs) since the prostatectomy and feel marvelous.......the best I have for years. I have dispensed with my blood pressure medication as my blood pressure has dropped without medication to an average of 120/70 now and my resting pulse is 55-60.
Life is good.
Time for the latest update. All goes very well. General health is excellent and PSA remains undetectable.
My disillusionment with the medical profession, despite my admiration of their skills, continues. As a part of my ongoing research regarding articles on PCa, I came across a few on adjuvant therapy. As I mentioned earlier, following surgery my Gleason was upgraded to a higher risk 8 with an area of focal extension noted on the post-op pathology. What I have read since leads me to believe that adjuvant therapy, such as radiation to the prostate bed at about 3-4 months (post surgery), may have been a wise move given this pathology. However, I came across these clinical reports some eleven months after surgery so I thought it wise to get some input from a radiation oncologist and a medical oncologist based on what I had read. Incidentally, both these professionals believe that PSA should be tracked at the ultra-sensitive level following surgery, although additional treatment should not usually be undertaken based on such readings. Their opinion was "clinical trials have demonstrated that, in patients with higher risk factors post surgery, prognosis is somewhat improved in those patients who undergo adjuvant therapy vs those who do not".
But there is a window for this adjuvant therapy --------3 to 6 months, and this window for me had now passed. So why had my surgeon not raised the possibility and whether he thought it wise or not? I have become cynical enough about some in the medical profession to believe that ego and reputation may be involved. If surgery patients have additional therapy they cannot be counted as being successfully treated by the surgeon, who, believing that he got it all, is prepared to roll the dice and watch what happens. Additionally, on the suggestion of the radiation oncologist I had my post-op slides re-examined by the leading lab in my state. The new report was basically the same but this lab downgraded the Gleason to a 4+3=7 from the 4+4=8 that I received following surgery. They also noted that the focal extension was comprised of grade 3 cells (which was not commented on in the original post-op report), so that is some more good news. I'm assuming it is better to have grade 3 cells rather than the more aggressive grade 4 poking their nose out there.
The PSA saga continues. Back in May I had a bit of a to and fro with the lab that does my PSA. The ultra sensitive test was again requested at the end of this August-------the report was again issued with a standard result, i.e. **1. This is not what was requested. There are five urologists (none of whom by the way are treating me) located within the same building in the city where I live and their protocol is to require only a standard PSA result--------it is for this reason that the pathology lab issues PSA reports to a standard result only. So I lodge a complaint for a second time and the test result is again re-issued, saying "< 0.001 ug/L undetectable". Now, I know that this lab uses the Immulite 2000 for its assays and I also know that this equipment has a lower detection limit of .003 ug/L and therefore cannot produce a result of < 0.001 ug/L. Somebody has made a mistake or worse, is fudging the figures in response to my complaint. To me, both scenarios are unacceptable in relation to the treatment of cancer. The lab ignored a subsequent letter from me querying the result so I took details on the technical capabilities of the Immulite 2000 to my GP (who requested the test) and asked him to pursue the matter.
As a result, at the following scheduled monthly meeting between the local specialists and the pathology lab, the issue of ultra-sensitive testing was raised. While the urologists held to the position that they were only interested in a standard result, the lab stated that they could no longer ignore requests for ultra-sensitive testing, as it was not the urologists who were on the line so to speak, so they would in future comply with requests for ultra-sensitive results. The results of this meeting were conveyed to my GP along with the information that my result of < 0.001 ug/L was "misreported". What in hell's name does "misreported" mean? My confidence in this lab and their quality control was now shot to pieces so I determined to find a lab that was more on the ball.
I am happy to report that I found such a lab at the Tumour Marking Unit at the Biochemistry Lab at Royal Prince Alfred Hospital in Sydney. I spoke by phone to the scientist there who completely understood my position and was more than happy to conduct the ultra-sensitive test there. This wonderful gentleman personally met me in the lobby of the hospital and escorted me to the test area and organized everything. He phoned me directly the next morning with the result which was < .01. He also stated that next time I came to the hospital he would show me through the lab and the test procedure. There are bad professionals, mediocre professionals and good professionals out there. Make sure you get the good ones. You may think following this rant I am hung up on the ultra-sensitive testing-----------I'm not. It is just that I believe this test is an exercise in science and as such should be exact and without mistakes or "misreporting". I fully understand that treatments if required are not based on ultra-sensitive results but this is not what I'm annoyed about. Things involving cancer should be done right and with care. Bill
Well another minor milestone has been passed. I am now 18 months post surgery and all is well. PSA at last test, (February) again done at Royal Prince Alfred Hospital in Sydney, came in at < 0.01 ng/mL. I have it done there (100 kms away) because I no longer have confidence in the local pathology service. I still get a little toey at PSA time but with the passage of time I now dwell on the what-ifs very little and just get on with living life. I have seriously been thinking of retiring for some time now and I think the current economic downturn has made the decision to shut my business somewhat easier.....I don't have the inclination to just tick over till times improve. The golf course beckons and I will heed the call.
Take care all and may all our little successes in each of our battles with this bloody disease continue.
So another section of the PSA time-line passes. The 2 year mark has been reached and currently the PSA is undetectable at the ultra-sensitive level. I still have it checked at the biochemistry department of Royal Prince Alfred hospital after the earlier "mis-reports" by a different lab. I do find it disturbing however to read stories of relapse after 10 years of undetectable PSA.....sheesh, you would think that you would be well and truly out of the woods by then but what can you do other than enjoy what you have at the moment. Reminds me though of that Godfather movie dialogue "Just when I think I'm free they reach out and drag me back in".
I'm still on the retirement track but cannot quite get there.....something always seems to come up and put it back a little further. Plans are afoot though and it won't be much longer.
Best wishes to all here and "keep on keeping on".
Just a quick update. PSA result in December (at 28 months post surgery) came back as < 0.01 again. Things rolling along as usual. My best wishes to all.
Hello once again. Time for an update is here - have I really not updated since December '09? Gee time can fly when you don't keep a close watch on it. [...and, as we say, this just confirms that there IS a life after prostate cancer!!]
Since then I have had three PSA checks. I usually get them each 3-4 months and at the ultra-sensitive level. April 2010 came in at < 0.01; August 2010 came in at 0.01 and December 2010 came in at < 0.01 again.
So things continue much as they have over the last three and a half years. I am mightily pleased to announce that my son and his wife will make us grandparents for the very first time in about 5 months - an event I am greatly looking forward to. Retirement is now well under way at long last. I have closed my business and am in the process of moving some stock to home storage and then shall lease out the business premises ( I will probably continue part time online). There is so much I need to do around the house now though - no time to actually put the feet up just yet.
Take care and my best wishes to all in their battle with this disease. Bill.
**1: Bill has used the measurement ug/L (micrograms/Litre), which is the way his lab reports PSA numbers. The more common way is ng/ml (nanograms/millilitre). The figures are the same value in either way of reporting. [back]
All goes well. It is now 4-1/2 years since surgery and I am still reading undetectable at the ultra-sensitive level. This still somewhat surprises me given the Gleason and the large amount of tumour within the gland but of course I am well pleased with the results. I am really looking forward to the 5 year mark in August as this means I can rejoin the ranks of blood donors again. Come September I officially become an "old person" ----- 65 years ---- I cannot believe it! Mind you, time has a habit of just sneaking by, so on a day to day basis you don't notice the subtle deterioration in physical abilities ---- probably just as well.
Time for another update. I cannot believe how fast time passes. I have a suspicion that time is relative to age --- time accelerates the older you get.
On the PCa front all continues as before. I now get my PSA checked locally as the local lab now issues the ultra-sensitive result. Travelling the 100 klms to Sydney (RPA) just to have a vial of blood taken was a nuisance. The actual result continues to be <0.01 which is pleasing after 5-1/2 years. I have dropped testing back to every six months now and shall continue with that regime for a couple more years before adopting yearly testing. At the 5 year mark I was able to again donate blood and I am pleased that I can do that again.
The last couple of years have spent quite some time tracking my ancestors dating from the late 1700s. Some of the things I discovered reveal just how tough things were in through the 1800s and how precarious life was then. I have the death registrations of not only my direct line, but all the brothers and sisters in those lines. In all those people over all those years, just one case of death due to cancer of any type ---- so I am somewhat of an exception with my experience of PCa. Just one point here - you don't have a death certificate - yet!] I get to look after my granddaughter a couple of afternoons a week which is great but I had forgotten how non-stop small children are. She really tuckers me out. My best to all and keep on keeping on.
Time once again for an update. Wow time flies. It is now just on seven years since I had surgery and all continues in much the same vein. PSA has remained undetectable (less than 0.01) at the ultra-sensitive level throughout those seven years and with my last test having been done in August of 2014 it remains unchanged. I am now fairly relaxed about the whole issue of PSA testing and the expected results but still maintain an active interest in the disease. Incontinence, which only ever amounted to losing a drop or two under stress (lifting heavy objects while twisting etc) has increased slightly. I am putting this down to a bloody cold winter, increasing age and my lack of exercising the relevant muscles occasionally -- I shall have to rectify that.
So another year older.
I recently developed pain in a specific spot in my mid spine area. I felt it was simply a new arthritic spot --- got to expect that I guess at 68 --- but I told the GP about it anyway. The GP ordered an Xray with mention of my treated PCa. This of course sets off everybody's alarm bells. The Xray reports probable osteo arthritis but the possibility of metastasis and recommends a bone scan to discount the metastasis. My thinking after all I've learned about PCa over the years is that unless I had one of the quite rare varieties of PCa which produce very little PSA (which wasn't noted on my post surgery pathology) I would have a detectable PSA if I indeed had such a metastasis. With grade 3 cells producing PSA of 4ug/L per cc of tumour and grade 4 cells producing 2 ug/L per cc of tumour, my thinking was that any visible (on Xray) or pain producing metastasis, must be big enough to produce detectable PSA]
[My post surgery pathology reported Gleason 4+4, which a second reading revised to 4+3 with a focal extra-prostatic extension comprised of grade 3 cells only. The surgical resection margin (although disrupted, ie. damaged) was judged to be clear.]
My choice would have been to get a new ultra-sensitive PSA and proceed based on that result. My new GP however, was trained in the UK, where apparently it is the protocol (by urologists) to order a bone scan on treated PCa patients every 5 years. Based on that protocol and the bet each way by the radiologist, he (GP) wanted to order the scan as well as the ultra-sensitive PSA.
The result was as I expected, ultra-sensitive PSA reading of <0.01 (undetectable) and arthritis confirmed by the bone scan. I really was expecting the radiologist to suggest that additionally, a CT scan might also be helpful. Medicare (and the community) though, was another $600 out of pocket (which I thought was unnecessary and my reasoning was confirmed by the PSA result).
Incidentally I have been asked why I am no longer under the care of a urologist. I really don't see the reason for one. A GP can order the PSA (I always ask for the ultra-sensitive) at a far cheaper cost to the health system than does a specialist (who also usually charges the patient substantially over the scheduled fee) and there is nothing medical at present that requires the services of a urologist.
So at the 8 year mark, PSA is still undetectable, and apart from the aches and pains of advancing age, all goes reasonably well. A slight bit of incontinence on really stressing myself physically is annoying though.
My best wishes to all. "Bill"
So, it's now been nine years and all fortunately rolls along much the same. PSA is still undetectable at <0.01. There is not much more to add.
I still maintain the twice yearly PSA test and always request that it be done at the ultra-sensitive level. General health is pretty good apart from the usual aches and pains of advancing age. The additional wisdom gained over the years does not really make up for the lost youth and vigour, but that's life and far better than the alternative
My best to all,
Bill's e-mail address is: firstname.lastname@example.org