My story starts in early 2004 when I noticed that every few hours I had a mild need to urinate and also sometimes the flow was a little slow, especially early in the morning. I talked to friends of around my age if they had anything similar and found that most had the same or even worse!
By March I decided to see my GP, he said that it was probably just an infection that could be fixed with antibiotics but there was also an outside chance that it could be my prostate. He gave me some blood and urine tests for the possible infection and also a PSA test. Three days later I called in for the test results and found that there was no infection but my PSA was 4.2 ng/ml.
The Doc told me that this test was not reliable enough to say that there was necessarily a problem and that I needed to repeat the test again in three months time and also have a more refined "ratio" test. Three months later my PSA was 4.7 ng/ml with a free PSA ratio of 14%.
He said that I posed a problem for him in that my results indicated that I was neither a probable or probably not, he looked at my concerned face and decided that he would refer me to a urologist anyway. Also he carried out a DRE (Digital Rectal Examination) and said that the prostate felt slightly enlarged with a deep groove and no masses.
My urologist looked at the test results, did a DRE and said that the prostate was firm but not hard like some are as he indicated by tapping his desk with his knuckle. "You have a 30% chance of cancer but the only way to know for sure was to do a TRUS biopsy"(it seems that most urologists are blunt). The biopsy showed most of the samples had adenocarcenoma at best patchy and at worst 80% but all Gleason Grade 3, giving a Gleason Score of 6.
He said surgery, my GP said see a radiologist for second opinion and referred me to a Professor of Radiology. The Prof gave me a good explanation of how radiology works but said that if he were me then he would have the surgery.
So 15th of September out came the prostate. I had a four hour operation including nerve sparing, woke up that evening with a catheter and a drain and went home three days later still with the catheter but without the drain. After an X-ray to check for leaks, the catheter was removed on the seventh day.
It is now four weeks since the operation and I have had little incontinence (just a drop if I blow my nose with the spring hayfever)and virtually no pain after the first three weeks. So far so good, I await the first blood test and its results but I have to say, in my experience thinge have not been as bad as expected. Maybe I have been lucky or maybe I had a good surgeon, I don't know for sure but for anyone worried about the surgery, it's probably not as bad as you might think.
Regards
Greg R.
Just back from the doctor today. It's the first time I have spoken to him since the operation as he has been overseas in Canada.
It's my six week after op follow up. We discussed my biopsy result Gleason 7 (up from the needle biopsy of 6) but still OK according to him. The cancer was organ confined and statistically gives me a 92% chance of non recurrence. My PSA is undetectable and I have no incontinance problems. Back to work next Monday but still time for some fishing tomorrow. So far so good.
Bye for now Greg R.
>Hello to everyone and happy new year.
Got my 4 month post operation PSA test a few weeks ago and am happy to say that it is less than 0.01 ng/ml. This gives me great hope for the future and I believe is the result of great work from a great doctor.
I have no incontinance issues and the nerve sparing done has allowed a steady improvement in the normal side effects, I would estimate approx 70% of what things used to be with more to come according to the Doctor.
Best wishes to all at the site.
Back from my Urologist after my second three month check up. I am happy to say that my PSA remains at zero, I am doing very well and the next test is not required for six more months.
I had some back pain and my doctor ordered an X-ray of my pelvis, this turned out to be just a muscular strain however the x-ray revealed 53 surgical clips that I did not know about! When I told my uro about them he just laughed and said "dont worry they are stainless steel, they won't rust".
If you can imagine what a large handful of tangled 1 inch nails might look like then that is what I see in the image.
Good luck to all and see you in six months.
It's been 14 months now since my surgery and I am happy to report that my PSA remains undetectable at < 0.01.
Life is pretty well back to normal and the ordeal of knowing I had cancer and had undergone surgery a distant memory now except for a rather untidy scar on my belly and some anxiety around the time leading up to the six monthly blood test.
My continence was never an issue and the nerve sparing continues to improve but like all of us, probably not quickly enough!
All the best for the festive season and see you in six months Regards Greg.
Hello to all!
It's been about 18 months since my last update and my life is essentially back to normal. My PSA remains undetectable at < 0.01 and all functions are about normal for a 54 year old. My Urologist has put me on yearly checkups now, he normally keeps his patients on 6 monthly checks for the first 5 years after surgery but because I have no real issues to complain about he thinks its is not necessary and it is a cost I am glad to forego.
I still believe that I have made the right decision going for surgery however only time will tell. The things against surgery as I saw them at the time was a biopsy core of 80% (might have been close to the capsule edge at one end), a relatively low PSA of 4.7 for the total volume of tumour (may have been some high grade tumour than the biopsy had not revealed). The thing going for it was that I might end up with the result that I now have.
Regards to everyone Greg R.
It's been a while since my last update, but not much has changed except my PSA which had been undetectable i.e. less than 0.01 for the first three years has for the the last 10 months been 0.02. My doctor says "it's nothing, just forget about it and I'll see you in twelve months time" - easy for him to say, hope he is right.
Other than that rare niggling doubt on the occasional sleepless night I don't much think about it . I have a new job that takes up most of my time, the rest is taken up fiddling with my old motorbikes and enjoying life.
Regards to all Greg R
Greg posted this to the YANA FORUM on July 22, 2009:
As I write this the feeling is the same as my first entry here at YANA almost 5 years ago.
I had an RRP almost 5 years ago with good results, my PSA was < 0.01 from September 2004 till October 2007 when it was 0.02 it stayed the same until March 2009 when it was 0.1 and again 3 months later 0.1
My uro has referred me to a radiation specialist for salvation radiation, has anyone had this experience of such a low PSA reading for so long and what am I in for?
Thanks Terry for posting my last update from the discussion forum and also many thanks for everyone that responded. Since then I have had a consultation with my urologist/surgeon who referred me to a radiation oncologist.
When I got my first 0.1 PSA test back in March last year I questioned the result because it was reported as 0.1 and not 0.10 - the second digit after the decimal point (to my mind) denoting the accuracy of the test. Some of the respondents to my post suggested that maybe the lab I was using had changed the method to a less accurate assay and that my PSA could well be unchanged. I emailed the lab manager to see if this was the case but his reply was quite vague and did not explain much, my GP did not know there was more than one test type. In August 09 I had another PSA test and a visit to my Radiation Oncologist where my PSA was 0.13, now I started to have some confidence in the figures. My Radiation Oncologist (the one who originally recommended surgery) said that it was probably a local recurrence and even though the pathology report after surgery showed clear margins the tumour was close to the capsule edge and perhaps if they had cut a few more slices there may have been a positive margin.
What to do, the surgery seems to have failed, would the radiation work as there was no guarantee the recurrence although at this stage tiny was local and not systemic, perhaps lodged in a distant lymph node indeed the statistics showed to me by my urologist (I think generated from John Hopkins data) indicate around 50/50. Had I been ten or fifteen years older than my current fifty eight years then I think I would have just waited to see what would happen but I am not so I chose the external beam radiation.
I won't describe the radiation as it is well described by others only to say that it was uneventful and quite tolerable. The doctor explained not to expect that my PSA would suddenly disappear soon after the treatment (as per surgery) but slowly drop because the cancer cells do not die immediately, only when they start to divide do they die and because prostate cancer is generally slow to divide so the PSA is slow to drop. He asked me to see him in six weeks and to expect about a 50% reduction in PSA by then and a continual drop for the next year so half of 0.13 would be about 0.6, I would have been happy just to see any sort of reduction. Yesterday my six weeks were up and guess what my PSA was - 0.01, I couldn't be happier, my doctor said it was a spectacular result and it's difficult not to agree. I don't quite understand why it would drop like that, does it mean that the cancer had suddenly started to divide at a higher rate - silly thought I don't care why!
The last five years or so have taught me to be realistic about this disease and not to expect that elusive cure, rather to make your individual treatment choices and move on, no matter where you are in life, you are still here and that is indeed fortunate.
Regards to all,
Greg R.
It has been one year since I started my external beam radiation after failed radical prostatectomy and so far so good. I have not experienced any significant side effects yet and hope not to in the future however I know that this can happen so I just look after my diet and like we all do with our PSA, just wait and see. My PSA dropped to 0.01 soon after the radiation treatment finished and my latest test a few months ago it was < 0.01.
I sometimes wonder about treatment choices, what if I had tried say ADT for a few years, could this be effective on its own? I wonder if there is any data on the possible longer term curative effects of ADT on the younger patient lower grade PCa - say T1C and PSA < 10? [My personal belief is that ADT should be used to manage early stage PCa, but there are no studies. The general belief is that is not a good idea because the studies that are available show that the disease can become what is termed AIPC (Androgen Independent Prostate Cancer), while other studies show a correlation between increased heart disease and diabetes. Again, my personal opinion only, is that the studies are on older men with failed treatment or advanced disease who have usually been on ADT continuously for long periods of time. Many of them have experienced the common side effects of weight gain while on ADT - and perhaps this is the cause of any signficant increase in heart or diabetic conditions?]
I read somewhere that postmortems of men my age show that approx 50% have evidence of prostate cancer so that means that every second man my age I see walking down the street has it, mostly without knowing and quite possibly all the better off not knowing, almost all of them will die of something else. [As a rule of thumb, many experts belief that adding a percentage sign to the man's age is a reasonable indicator of the percentage of men of that age who have PCa. See The Elephant In The Room for other relevant statistics on the risks associated with PCa.] My next PSA will be in six months time.
Regards to all Greg Rutherford
It's been about six months since my last update and about 12 months since my salvage radiation from a failed RRP was completed My PSA remains at < 0.01 and I have had no lasting treatment side effects to speak of.
My radiation Oncologist said that if things stay the same after the next two six monthly checkups then he is happy for me to be monitored by my local GP probably on an annual basis and that is fine by me.
Good Luck to all of us Greg R.
It's been some time (years) since my last update but hearing the news of Terry's passing and recent events has prompted me to make a new entry.
About six weeks ago I noticed a couple of pink drops after voiding my bladder, went to work as usual and some hours later at the next toilet visit well there was a considerable amount of blood and what appeared to be a clot. Off to the GP who sent me to the urologist who did my RRP, he said that it was either a passed kidney stone, some sort of bladder cancer or most likely radiation cystitis and I needed a cystoscopy to verify what was happening. A week later I had a general anaesthetic and the cystoscopy and woke up with a catheter that I had in place for two days. The uro had taken a biopsy sample, thermally ablated a blood vessel and widened the bladder neck opening that he had sutured 10 years ago. The biopsy proved negative for cancer but showed a mild case of chronic radiation cystitis, the doc says that at this time no treatment is required and I shouldn't have any more bleeding. If I did require treatment in the future then it would be about 40 hyperbaric sessions and this type of treatment has a good success rate with few side effects.
My PSA has been rising as well as follows Dec 2011 =<0.01, July 2012=0.02, Nov 2012=0.02, Nov2013=0.03, July 2014=0.05. My oncologist was reluctant to call this a recurrence until the last result and now thinks that it is probably some "rogue" cells outside of the pelvic area and regular monitoring is all that is required until it reaches 5 0r even 10 before hormone treatment would be required.
Other than this bump in the road I am quite well and enjoying life.
Regards
Greg R
My PSA is slowly rising, last check in July was 0.08 - too small yet to track doubling times and I am not too worried about it. The radiation cystitis seems to have settled down since the procedure to burn off the offending area, no more blood and I'm thankful for that.
All in all my health is ok, still working and still enjoying life
Regards to all
My next scheduled blood draw will be in December and I expect my PSA to be approx 0.1, I have had no more radiation cystitis symptoms since the treatment to my bladder and hope this continues. All in all my general health is good and although my PSA is clearly on the rise again I am not expecting the next type of treatment will be required for some time yet
Best regards
Greg R
Just updating my story, PSA is still rising and because I'm in between tests I'll estimate it at approx 0.20. The doubling time is approx 18 months as best I can tell and am on yearly checkups with my oncologist. No particular concerns, I suppose some more treatment will be required at some stage but am hoping there will be a magic bullet before then with something more palatable than ADT which is very much not my cup of tea.
Regards
Greg R
Here I am again for my annual check-in.
My last PSA 6 months ago was 0.18 as it was 6 months prior to that so although there are still some (as my oncologist/radiologist says) rogue cells left they don't seem to be very active.
I'm on 1 year checkups with my rad oncologist until the end of this year which will mark the 10 year anniversary of my salvage radiation and then she doesn't want to see me again and my GP will continue the PSA monitoring. I would prefer to keep seeing her via the public hospital/Medicare system because of the free consultations but I guess the system can't keep carrying me forever
Regards
GregR
Latest PSA test is 0.28 along with a call from my oncologist recommending to make an appointment to have a PMSA scan. I had that last week at St George public hospital and today saw my oncologist for the result. It seems I have a recurrence in the prostatic fossa just beneath my bladder - bummer. She gave me the treatment options of hormone but also put me in a discussion group with other oncologists about any other type of treatment. It seems that because it has been ten years since my salvage radiation treatment there may be some further radiation options 1/ some type of stero radiation focusing on just the lesion 2/ some sort of HDR targeting the lesion via ultrasound or 3/ seeds targeted by ultrasound again just at the lesion site.
I've been dreading hormone treatment but in the back of my mind knew it was somewhere in my future, hopefully I get accepted for one of the other options.
Regards
GregR
One more year has past, they certainly speed up with age. I'm on 3 monthly PSA tests and 6 monthly Oncologist visits at St George public hospital in Sydney. My PSA 3 months ago was 0.28 and last week it was 0.23. Never had a reduction in PSA without a treatment before so I don't know if it's a dud reading or a genuine reduction, either way it'll do for now. No other real issues
Best to all
Greg
Still on 3 monthly PSA tests and six monthly consultations with the oncologist, it seems my PSA doubling time is a little less than 10 months so thats not good but I had a second PSMA scan recently and it showed an increase in tumor size but no spread yet so thats good. I'm not keen on hormone treatment and will try to delay it as long as possible
Regards
Greg
Since my last update my PSA has gradually risen to as high as 1.3 and then fallen to 0.5 and is now 0.71. The doc keeps waving the option of hormone treatment at me but accepts my decision to delay it, I suppose one day I will need it but I'll take some convincing. Keeping busy with my motorbikes, dabbling in some watchmaking and made a violin and learning to scratch out a tune, life is pretty good at the moment.
Stay strong fellow survivors
Regards
Greg
Greg's e-mail address is: gregoryrutherford1 AT bigpond.com (replace "AT" with "@")
