Thanks are due to Eric. He came up with the idea of indexing the Survivor Stories that are on the site and did all the preliminary work to set them up.
Being diagnosed with prostate cancer came as one hell of a shock as I had none of the 'typical' symptoms. The first indication I had a 'problem' was in July 2000 when I had my annual medical check-up and my GP ordered the usual blood test. A few days later my GP phoned to say he wanted to see me as one of the blood test results was higher than he'd like. During the consultation he indicated my PSA was 7, and anything over 4 was a concern. He performed a digital rectum examination (DRE) and recommended the name of a Urologist I should see ASAP.
My PSA reading two years earlier was 3. Had I known then what a PSA test would detect, there is no doubt I would have not waited so long for my next 'annual' check-up.
At my first appointment with the Urologist, he also performed a DRE and indicated my prostate was enlarged and that I should have a biopsy. He also outlined the three most common forms of treatment for my age (56), ie surgery, hormonal treatment and radiotherapy.
A couple of weeks later I had the ultrasound immediately followed by the biopsy during which the Urologist took 10 core samples. He later said that most Urologists normally only take 6 samples. But by taking an extra 4 samples cancer is often detected which may not be found in the normal 6 cores.
A week or so later the Urologist advised 6 of the 10 were 'positive' and that the cancer was "very aggressive". (There was no mention of a Gleason Score. It was during a subsequent visit after I had read a bit that I asked for and was advised my Gleason Score was 9.)
The next day I had a whole body bone scan and the day after that a pelvic area CAT scan. Although both results indicated "all clear", the Urologist said the aggressive nature of my cancer worried him and recommended a pelvic lymph node dissection. This involved keyhole surgery under general anaesthetic and an overnight stay in hospital.
There are two forms of a Radical Prostatectomy. One method involves an incision through the abdomen where the surgeon will first remove the pelvic lymph nodes, send them off to the pathologist while the patient is still under anaesthetic, then either continue with or abort the prostatectomy depending on the result. The 'perineal' method (described later) involves the need for a separate operation to remove and check the pelvic lymph nodes but has the advantage that the pathology is not 'rushed'.
Three days later the Urologist advised no cancer cells were detected in lymph nodes, so there was some probability the cancer had not escaped the prostate. He indicated all treatment options were open to me - but the decision was mine to make. He showed me a 'Partin Table' that indicated with Gleason 9 there was only a 30% chance of success ie. he could "get it all" with surgery. He suggested I see an Oncologist with whom he had discussed my case. The Oncologist indicated statistics showed a 70% success rate with 3 months of hormone treatment followed by 7 weeks of radiotherapy then 3 more years of hormone treatment. Despite this promising information some of the side effects worried me a little so I decided to read some more. I also went to a local Support Group meeting. But I found the information I was reading and hearing confusing and sometimes contradictory. But all agreed that I had to believe the treatment I decided on was 'right' for me.
I eventually chose surgery. Why? It appeared to me the best sequence of treatments, then if required, radiotherapy followed by hormone treatment if all else failed. I felt this would give me "three bites of the cherry" - if I needed them and perhaps a better chance of a successful outcome.
On the Monday 16th October 2000, the Urologist started a Radical 'Perineal' Prostatectomy. This involved a 'U' shaped incision between the scrotum and anus and a separate incision for a drain tube. Later that day the Urologist came to see me and said all went well, ie. there was little loss of blood so there was no need for a blood transfusion (I had given two units of blood just in case) and the prostate had come out 'nicely' (what ever that was supposed to mean). The day after surgery all seemed to be going well - there was no sign of infection and none of the pain I was told to expect - just a little 'discomfort' when passing 'wind'. Breakfast was fluids only but I was upgraded to a light diet lunch and dinner.
On the second day (post operation) something happened that I don't recall reading about in any of the books or YANA Journals. I suddenly became very emotional (yes, openly crying). The nurses did their best to calm me down by suggesting it was probably due to a build up of a number of things, ie stress incurred during the treatment decision process, anxiety about surgery, worrying about the forthcoming pathology result or about being emotional. They tried to assure me that getting emotional was just part of the healing process after the trauma of major surgery. When things got the better of me again the following day, they suggested and I agreed to a visit from a social worker. The social worker also told me it was "quite normal" to get emotional (not for me it's not, I was still thinking!!) and what I was going through emotionally was very much like loosing a loved one (wife, child) that is, I was grieving - for the loss of the person I was before being diagnosed with cancer. This seemed to make sense and I guess I started to believe what they were all telling me and not what I was thinking, ie that I was "losing my mind".
Just after lunch on the Friday, four days after the operation, my Urologist arrived with the pathology result. He said there was a lot of cancer in the prostate but the majority was Gleason 7, only a couple of bits were Gleason 9. Also in two areas the cancer was at the edge but there were no surgical margins. He then suggested I should "go home" to continue the recovery process but it was OK to stay longer in hospital if I wanted to - I was home by 3pm. The drain tube had been removed the previous day but I went home with a catheter in place.
Ten days after the operation the staples (clips) were removed from the main incision area and I was advised that all was healing up OK. A watery fluid and occasional blood was still draining from the separate incision but I was told this would stop in a day or two. Five days later the catheter was removed and an X ray was used to check the area where urethra had been rejoined to the bladder. This indicated all was well but now came the time I was most concerned about, ie. being incontinent. My Urologist simply said expect to be 'wet' for a few days or possibly longer.
I am happy to say that incontinence has not been a problem. The 'other' side effect, impotence is currently a problem but does not greatly concern me at this stage. I almost feel like my 'old' self again in body and mind and although the pathology result was much better than I expected I guess I know that I am not "out of the woods" yet. I will wait with bated breath for the next few PSA tests. But for now things are looking up and I know with some certainty where things stand - which was another reason for choosing surgery.
Some have said I have been 'lucky'. Pam and I now believe it was the great support and the prayers of all my family and friends that has got the better-than-expected result (to date) for me and inner calm for Pam through the 'ordeal'.
[Update 18 December 2000] PSA currently "less that 0.1", next blood test in 3 months.
[Update March 2001] Current PSA remains at less than 0.1.
[Update March 2002] Current PSA remains at less than 0.1. Eric is enjoying life to the full.
[Update September 2003] Current PSA remains at less than 0.1.
Eric retired in October 2002 and enjoys spending more time with family, making/editing home and holiday videos, working for his local church, etc, when not tripping around Australia in a caravan. is enjoying life to the full.
[Update December 2004] Eric hasn't had a PSA test lately as he has been too busy travelling around Australia with Pam in their caravan. They had a great time on their 6 month, 27,000 km (16,000 plus miles) journey. They had a great time, took lots of photos and have 25 hrs of as yet unedited video.
[Update March 2005]
My PSA is still less than 0.10 ng/ml - the blood test was ordered along with the usual annual check up stuff by my GP and he gave me the result. I was due to see my Urologist in December 2004 but phoned his receptionist to say my GP had given me my result and would he still want to see me - she said as long as you are OK (no problems you wish to discuss) there's probably no need.
[Update November 2005]
Just confirming I visited my Urologist today and my PSA remains below 0.10 ng/ml. He said it's very rare that PSA has been known to rise after 5 years - post operation but after 10 years it has not occurred to his knowledge. Which is all good news for me and I thank God for his blessing.
[Update November 2006]
Now to the stage were I get a blood test once a year. I phone for the result one year and visit my urologist every other year. Latest result was given to me today by the urologist's nurse who said my PSA was "Normal and you can't get anything better than that!". Haven't had a result quite like that before but it sounds good. :-)
[Update September 2007]
Eric and Pam have become what we Australians call "grey nomads". In a recent mail he says:
We had 6 weeks in New Zealand earlier this year and just returned from 10 weeks around SouthEast Queensland spending much more time in each place - great.
In passing he mentions that his PSA is still undetectable - there is indeed life after PCa!!
[Update December 2008]
Eric and Pam have had another great year for travelling - around Australia in February/March: seven weeks cruising Alaska's Inside Passage on a small ship only 113 passengers and 73 crew much better than those big ships, then 5 days - Anchorage, Denali N.P and Fairbanks. Then self drive - Vancouver Island, Vancouver, Whistler, Kamloops, Jasper, Lake Louise, Banff, flight to Toronto and then Halifax then back to Vancouver for the 15.5 hr flight home. As a sweetner they had ten days in November on Lord Howe Island. Oh! and as far as his PCa is concerned he says:
All is well with my PSA, ie. still less than 0.1 and cholesterol, sugar, vitamin D and blood pressure are all good but I will continue to have vitamin B12 shots 3 times a year though.
[Update December 2009]
Latest PSA is 0.1 not less than 0.1 which it has been since 2000 so my GP has suggested an appointment with my Urologist - I'll see him in the New Year.
[Update March 2010]
As previously reported, in December 2009, my PSA was 0.1 (not "less than 0.1" as it had been since my surgery) - so my GP suggested another test in 3 months and to make an appointment with my Urologist. (I haven't actually seen my Urologist since November 2005 before that I was phoning his nurse for the results.) and then by arrangement PSA was added to all my other annual blood tests and my GP would give me the result.
I have just returned from seeing my urologist and my PSA is again 0.1 (not "less than 0.1"). He says he's not worried by two "0.1" readings in 3 months but as a precaution suggested another blood test in 6 months. But after telling him that Pam and I were planning to leave end of May on a caravan trip to WA for 5 months he was OK with a blood test before we go.
He says the likely scenarios are:
(1) if it's again 0.1, then another test in 6 months;
(2) if it rises to 0.2, then a test in 3 months while we are away and phone for the result;
(3) if it gradually rises to 0.4 or 0.5 he would start radiotherapy immediately; but then,
(4) it is quite possible it may return to less than 0.10.
Had another PSA test on 7th May and the result was again 0.1 - Next check in December so we are off soon to Western Australia in the caravan.
Back from another adventure, and planning the next one - small ship cruise, this time Iceland followed by a self driving tour of Scandinavia, Eric had a spot of time to get his PSA checked and has this to say:
I had another PSA test earlier this week and phoned the urologist's nurse for the result yesterday. She said it was "Perfect" without actually giving me the result. When I asked she said "0.1" (not < 0.1) and then asked if I wanted to keep my appointment to which I said "No, unless you think it's necessary." She said "no" but would make an appointment for six month's time.
If there is anyone who epitomises the aspect of "There Is Life After PCa" it is Eric, I reckon.
With three weeks to go before his next Odyssey, Eric mailed me to say:
Just phoned for my latest PSA test result and it was 0.10 again. It's been the same now since Dec 2009 so I have cancelled an appointment with my urologist (made 6 months ago by his nurse "just in case
I will have another PSA check in six months but if that's the same I will discuss with him going back to annual tests to coincide with my annual check up with my GP.
I have just had my 6 monthly PSA test and the figure is now "0.12" ........ so, from - "less than 0.1" in Dec 2000 (after surgery) - to "0.1" in Dec. 2009 - to "0.12" Dec 2011 a rise of 0.02! Why is it so?
My urologist said that Pathology is now reporting PSA to 2 decimals places. So it could have been "0.12" back in Dec 2009 who knows? [I think that the most likely reason behind Eric's change in PSA numbers is a change at the pathology laboratory which may well have switched from normal PSA testing to Ultrasensitive or even Third Generation tests. It is always worth getting copies of a PSA report and checking to see if there has been a change.] But he's not concerned saying, "the number is less important than the time it takes to get there" (and in my case that's 11 years). He said it is (quote) 'exquisitely' (unquote) unlikely that it will rise dramatically but if and when it does rise again it will probably be in small increments over a long period of time at which time he may consider suggesting radiation then hormone treatment".
Given the probably side effects of those treatments, I think I would need a lot of convincing. Interesting forecast given that medical professionals are reluctant to give predictions and given he said in Nov. 2005 "..... it's very rare that PSA has been known to rise after 5 years - post operation but after 10 years it has not occurred to my knowledge". As I've said before if he's not worried, why should I be?
Next test June 2012.
June 2012 - 12 years post Op :-)
I phoned my Urologist's nurse for latest PSA and was informed it is 0.1 "What about the second number?", I asked and in summary she replied, ".... Your PSA is actually 0.16 (previously was 0.12) .... but don't worry about the second decimal place, next time it could be down a bit, it is not significant and not normally used to consider a change to a patient's treatment......we don't even say "less than" (eg. <0.1) any more as miniscule increases causes unnecessary anxiety amongst our patients. [There seems to be some kind of informal agreement among doctors on this issue. As Mike C reported some months ago, his doctor in Canada has said the same thing. There was a recent study on this issue and you can see it at Ultra-sensitive PSA]
Next check December 2012.
I got the result of my latest PSA today , 6 months ago = 0.16. today = 0.29 Urologist says he's OK with that and will do another test in 6 months.
A church friend of mine had the 'op' about 4.5 years ago, PSA stayed less than 0.1 for a couple of years and then gradually rose 0.27 earlier this year. His/my urologist (one and the same) suggested he see an Oncologist and he underwent radiation. Why him and not me? Perhaps his PSA rose in 4 years where mine only after 10 years?
Here are two of several 'sayings' I have picked up over the years and use occasionally when speaking to other people - but I also try to apply them to myself:-
(1) Never die wondering..." ie. if in doubt, check it out.
(or as Kelly Exeter's blog says, "life is way too short for regrets and 'what ifs' ")
(2) Hope (and pray) for the best but prepare for the worst.
After the last PSA result of 0.29, I was encouraged, via email from 'Paul M B' who had read my story, to be tested again soon. He concluded with, "...for God's sake don't wait half a year!?
Isn't is wonderful when someone is worried about others they've never met. I really appreciated his concern so I said I would get tested a bit earlier - in March. I guess you could say, I partially ignored the first 'saying' - but as I've said before, '.. If my urologisy wasn't worried, why should I be..' - but true to form, my GP (general practitioner/family doctor) was concerned. During my recent annual check up while reviewing the results of various blood tests he decided to override my Urologist and ordered a PSA test immediately along with the usual numerous other blood tests he requests at least annually. As usual, he asked me to call him in a few days for the results. Believe me, I was definitely not ignoring the second 'saying' when I dialed his number.
When he finally came to the PSA result he said, " It's come down! from 0.29 to 0.19.." but as cautious as ever he also said I should be tested again in May as per the Urologist request. This I will do. with 'bated' breath :-)
Well, my Urologist has decided my next PSA test should be late September 2013 :)
24th September 2103
Latest result is 0.2. (Note: No 2nd decimal place any more). Have just returned from a 4 month's caravan holiday to Darwin via Cooktown and returning via central Queensland & NSW - 16,600kms.
Next check up in 6 months time.
Visited by GP today for a flu and pneumonia shots. He had received latest PSA (sample taken yesterday) which he said was 0.48 this is after staying at less than 0.1 for 10 years. It's been creeping up since then to 0.29 but it did drop once to 0.16. So I called my Urologist's nurse who said it was 0.4 (doesn't give 2nd decimal place) and suggested I keep my appointment next Tuesday as I had not seen him (only because he didn't previously see the need to see me) for two years. More after next Tuesday :-)
In October 2005 my PSA remained at less than 0.10 ng/ml. My Urologist said then, "it's very rare that PSA has been known to rise 5 years post Op. but after 10 years it has not occurred" to his knowledge". I visited my Urologist yesterday who said he doesn't say that any more. Over the past few years PSA of patients of his and his colleagues has been rising - so what's changed to make this happen?
My PSA has risen from 0.29 to 0.48 which my Urologist says is not due to the Total Ankle Replacement Op. (due to arthritis and cartilage damage) I had on 12th March. He has recommended that, as I have no other health issues, I talk to an Oncologist, "Now". Having reasoned later to myself that 'short term pain' (of Op. and recovery) would result in 'long term gain' for my ankle, to me, the same reasoning may apply to Radiation so I will see an Oncologist then consider my options.
On 24th April, Pam & I met with an Oncologist and his female Registrar at Wollongong Hospital Cancer Care Centre for a very relaxed and unhurried information, Q & A session - In fact we were very impressed how it all went as they were both very pleasant people to converse with. The Oncologist said, given my general good health and relatively low PSA, the cancer cells 'should' still confined the Prostate 'bed' and Radiotherapy has a 50-60% chance of eliminating them - but no guarantees! I was surprised he was prepared to quote a %-age but with those 'odds' I am going ahead with the treatment. A "Planning" session is on 1st May and treatment follows maybe 2 weeks after that. I know what will happen if I do nothing - so to go along with 'one' of my favourite sayings, ie. "Don't die wondering...." , I am doing something knowing it may help or may just delay things...........
On 8th April my PSA was 0.48 and on 15th May it had dropped to 0.36. However, my GP, Oncologist and Urologist all advised to start Radiotherapy which I did on Monday 2nd June and will have a total of 33 treatments - one is done each weekday (M-F). After 19 treatments I saw a Cancer Centre doctor for minor issues with bowel movement which could have resulted from either (1) a complete change in diet before the treatment started from a High Fibre (to manage slightly elevated Cholesterol) to a Low Fibre diet (saw a dietitian for this), (2) Magnesium Tablets (mild laxative & to manage 'gas') and/or (3) Radiotherapy. I am feeling a bit tired in the afternoon but perhaps no more than usual for a 70 year old :-)
I saw the Oncologist today and my PSA is now 0.24 down from 0.36 in May 2014 - not quite the result the Oncologist was hoping for but as he said it's early days and my PSA will be checked again in 6 months at which time the effects of the Radiotherapy on the cancer cells will be complete. Apparently, Radiotherapy damages the DNA in the cancer cells and the amount of damage determines whether the cancer cells will die (PSA reduces) or they reproduce (PSA increases) in which case a body scan will determine where these cells are. If the PSA increases, the rate of increase will determine if and when a treatment (eg. hormones) will be recommended. The Oncologist is not greatly concerned as it seems I am one of his more 'healthy' patients. As he said, "don't worry about the PSA numbers, just get on with life" which we always intended to do anyway.
Just a quick update - before Radiotherapy = 0.36, 6 weeks after Radiotherapy = 0.24 and the latest (15 Dec today) = 0.14 - so still going down. Next test March 2015.
I saw my Oncologist today (24th March 2015) who said there is currently no evidence of prostate cancer - my current PSA is 0.09 which could still go down further. I had been offered a Gallium 68 PSMA* body scan at Royal Brisbane Hospital but my Oncologist says it's not required unless my PSA starts to rise again rapidly.
* A study "Comparison of PET imaging with a 68Ga-labelled PSMA ligand and 18F-choline-based PET/CT for the diagnosis of recurrent prostate cancer" concluded that Positron emission tomography (PET) using Gallium 68 PSMA (prostate-specific membrane antigen) - "detects PC relapses and metastases with significantly improved contrast when compared to choline-based PET/CT. Nevertheless, the most significant advantages of 68Ga-PSMA PET/CTare the sensitive detection of lesions even at low PSA levels, of even small lymph node metastases (primarily due to a high radiotracer uptake) and of central bone and liver metastases due to low background signal."
Latest PSA is 0.12 up from 0.09 in March 2015. The Oncologist's Registrar says it may be no more than a "flicker" but will test again in December to see where it is trending.
Not related but may be of interest: (a) Very little discomfort now with my Total Left Ankle Replacement which was done March 2014. (b) Findings of a recent MRI performed due to pain in upper legs suggests cause may be due to moderate to severe central canal Stenosis. A report following a Whole body bone scan says elsewhere whole body images do NOT demonstrate any features to suggest metastatic disease.
Otherwise feeling great as have just returned from a 3 month's holiday in our caravan covering over 11,000 Kms around the central parts of Australia.
Latest PSA is 0.23 up from 0.12 in October - apparently still a bit too low to consider a PSMA PET CT scan at this stage. Next test in March 2106.
My PSA as at 18th March is 0.19 down a bit from December 2015. My Oncologist discuss "PET" scans (now available in Sydney) but recommends against it until my PSA is at least 1.0.
Recently sold our house and now living in our 13' caravan until our Villa in a new Retirement Complex is ready - expected completion - early 2017.
My PSA test result today 2nd Sept 2016 was 0.13. My Oncologist was pleased with the result [so was I :-) ] saying it normally takes 18-24 month after Radiotherapy for PSA to level out and so 0.13 may be my new base level.
We are still living in our 13' caravan but doing quite a bit of house-sitting for friends and family.
The latest update on moving into our new retirement villa at Shell Cove NSW is now May/June 2017. The new retirement complex will consist of 33 self care villas, 47 self care apartments (3 story building) and 127 room Residential Care complex occupying levels 2 & 3 of a 3 story building. All except the apartments (they will commence building those in a few months) need to be completed before anyone can move in.
I saw my Oncologist on Friday 3rd March 2017 and my PSA has risen from 0.13 to 0.14. He had no cause for concern so neither have I :) ha ha. Again he suggested this may be my new baseline.
Eric's e-mail address is: firstname.lastname@example.org