I am not sure where my journey begins. I suspect many many years ago. Back in 1992 whilst travelling overseas to US, UK and Europe I developed a great urgency to urinate each time I boarded an aircraft with no sense of relief that my bladder was empty and of course I needed to go again and again. (every embarrassing) The pain and discomfort was really terrible. Each time we landed I went to the toilet with great relief and the pain and discomfort would subside. We enjoyed the next six weeks travelling US and Canada by car, no problems, actually I forgot about "it". Then came time to fly to London from New York guess what, I needed to urinate within minutes of boarding the flight, strange happenings indeed.
The six week trip of Europe by bus caused no problems with the waterworks but on arriving back in the UK for a three week car tour it was a different story, hey I am not on a plane now but driving so what's going on? I took myself to a local hospital in London and was given antiboitics for a bladder infection, but that approach didn't appear to work. The following few days I was in real trouble I could hardly pass urine with increasing discomfort and pain. So eventually to another hospital (Cromwell) specialists, ultrasounds, overnight stay with a catheter. The medical people could not find anyting definitive but my prostate was slightly enlarged. I was discharged the next morning and missed our flight back to Australia via Thailand. We eventually caught a flight (4 days later)to Thailand and guess what "it" all started again from London to Bangkok to Australia a most miserable trip. This sensation of wanting to urinate with no relief is truly frightening. Anybody got any suggestions, medical experts more or less drew a blank?
AUGUST 1992 (approximately 4 months later)
On arriving home in Queensland I pursued my problem with eventual trip to a Urologist - "What's going on," I ask? After a series of tests, ultrasounds, DRE, cystourethroscope, I needed a transurethral resection of the bladder neck. Interesting.
OCTOBER 1992 (approximately 2 months later)
Eventually this surgery took place on a Friday and what a wake up call to pain and discomfort. The catheter was causing me a lot of discomfort (the need to empty my bladder was overpowering). The surgeon was summoned to my distress on the Saturday morning. He was most unpleasant and his demeanour showed he was annoyed. The nursing staff attending me said it was one of the of the most callous procedures they had witnessed from a doctor wielding a catheter in some time. ("out" and "in" I nearly went through the ceiling. He stormed out of my private room without a word. I would never let him touch me again. I eventually recovered after two weeks and all seemed well until the next year 1993 the problem re-appeared on a flight to Thailand. Of course the urgency and discomfort of not being able to urinate on the aircraft settled once landed. On arriving home my GP suggested another trip to the now infamous urologist - No Way! (by the way this unsympathetic urologist said I had a fairly small prostate gland in 1992). Things settled down.
In 1995 Pauline and I went on a extensive Asian holiday and have I learnt anything about plane flights? No! as I had the most unbearable pain and discomfort on and off the many flights we did in Asia. On returning home all eventually settled down. I have only had two short flights since. I am sorry for being long winded but I think it's worthwhile.
AUGUST 2002 (approximately 10 years after overseas holidays)
My GP of 30+ yrs decided I should have a PSA as my father had PCa many years earlier but died with it aged 85. My age in 2002 was 58 (June)
30 August 2002: I was told my PSA was a little high and it should be checked again in 6 months. Eventually I found out it was 8.23 ng/ml (too high)
OCTOBER 2002 (approx 2 months after my first PSA)
My brother announces he has been diagnosed with advanced PCa with a PSA of 133 ng/ml. no symptoms. Hormone treatment for him. Unfortunately he passed away on 5 May 2004. PCa catches another unsuspecting victim. He was 68 yrs old and had just retired.
25 February 2003 (6 months after my first PSA): PSA 7.24 ng/ml wait and watch. This was my 2nd PSA - down 0.99 ng/ml
10 October 2003 (approx 8 months after my 2nd PSA): PSA 6.50 ng/ml. Let's wait another 6 months (down 0.74 ng/ml)
5 May 2004: My brother dies from PCa approximately 18 months from diagnosis age 68.
7 May 2004 (approx 7 months after my 3rd PSA): PSA 7.21 ng/ml - up 0.71 I am now officially concerned about myself after reading so much about PCa for my brother back in 2002/03. I want a biopsy. I went to my GP who announces he is about to retire so I had to find another GP but fortunately my old GP gave me all my records dating back to the late 1960's. I thanked him for looking after me for all those years, he was a caring person. My new GP reviewed my records and agreed with my old GP except he was concerned with my PSA and of course so was I.
October 2004 (approx 2 yrs and 2 mths after my first PSA): I eventually saw a Urologist a Dr Malone who turned out to be exactly the person I was looking for, someone who was keen, conscientious and enthusiastic about his job. He did a DRE, prostate big but OK (non palpable). He went through all the options. I was starting to take a liking to this Urologist, not too old as to close his mind down to new thinking medically but old enough to be mature and experienced. OK, he was the doctor for me. Job one done. Dr Malone said to go home and think about the situation, that thinking lasted about two minutes, I want a biopsy.
1 February 2005 (approx 3 months after my first visit to Dr Malone): Biopsy caused no problems just the usual side effects, 12 core specimens taken.
8 February 2005 one week after biopsy (THE DAY): Results of biopsy, 11 cores clear, 10% of 12th core cancerous with a Gleason Index 3+3 (6) and staged as a T1c. I must admit I heard nothing after the word "cancer"; lucky for me Pauline was present and as she is very particular type of person busily taking notes during the visit. I do remember leaving the surgery with a handful of literature and a video. What next? I must confess deep down inside of me I had already decided if I had PCa and what I would do about it if the pathology came back positive. Being a retired Laboratory Analyst for some 28+ years I went through the following few days anaylsing the pros and cons but I knew what I was going to do. The big "chop" as I call it. Radical Prostatectomy.
9 May 2005 Monday (3 months after diagnosis): The big "chop" day. In a private hospital by mid morning, went through all the pre op procedures. I must admit I was shit scared but I do remember the anaesthetist Dr SB... (another top guy) gave me small glass of something I don't remember as I was more concerned if Dr Malone had everything ready and most of all a good nights sleep the night before, hey this is me and he is about to change the rest of my life for ever. What ever Dr SB... gave me knocked me out fairly quickly as all I can remember someone saying "īt's time" and the bed moved. Time approximately 1.30pm but who was watching a clock.
I woke with Pauline and a friend standing close by, it was nearly dark. I was aware there were tubes, drains and of course the catheter so I figured my prostate was in the hands of the pathologist. I don't know her name but Dr Malone said she was good and having faith in what he says I was comfortable with that.
10 May 2005 Tuesday the next day: I actually don't remember much of anything that day but there were people, nurses coming and going taking observations, emptying the urine bag etc. On reflection I think one nurse spilit my "bloody" urine. Of course Pauline always seemed to be about and that was just great and wonderful. I was feeling OK - even had a walk on Tuesday night. Then I started to become bloated, this bothered me greatly.
11 May 2005 Wednesday 2 days post op: My tummy was starting to blow up like a ballon and I was in distress, I needed to pass wind/gas badly. Dr Malone ordered a ultrasound, found my faithful gallstone of many years and a lot of bowel gas. This would pass I was told by the nursing staff but I must say it was a hell of a lot worse than the operation. At this point, what operation? - I had forgotten about those drips, drains etc. I was self administering pain killers not for the pain of the operation but the gas problem. The bowel gas fell into insignificance when I received a call from Dr Malone good news he said "negative margins", I hope I thanked him because again I don't remember much after hearing the word negative. I do remember crying though. I thanked God and went to sleep with my extended gas filled tummy.
12 May 2005 Thursday 3 days post op: Dr Malone dropped by and checked his craftmanship and talked about going home, that got my attention very quickly I must say. By this time I was walking a lot up and down and around the corridors, but he was concerned about this wind/gas problem. I told him I always had a big tummy and this was probably normal for me, somehow he didn't believe me but it was worth a try. Actually I was starting to pass a little wind. He said he would see me 7.15am Fri. All the tubes/drains were long gone except for the good old catheter which was causing no problems at all, a great relief and very different from past experiences.
13 May 2005 Friday 4 days post op: I rang Pauline and said to be at the hospital at 6.30am as Dr Malone was considering sending me home. By the time she arrived I had packed my belongings made the bed and placed my bag in the door way for Dr Malone to step over, just a hint. I wanted to go home with Pauline and my catheter. Something must have worked as I was home by 8.30am. By this time I was really and I do really mean breaking wind and bowel movements for the rest of Friday. I suspect I was given "something" in a glass of milk that morning just prior to leaving hospital.
(Just a note on my treatment in hospital, it was excellent everybody fussing around making me feel comfortable. Unfortunately there is one in every group that lets the side down. She was a attractive young nurse who always seemed to be on duty, each time I opened my eyes she was there doing something. I soon realised she was the only nurse to ever wake me from sleep that was so hard to come by. I do recall early on, Tuesday I think, she wanted me to have a Panadol as my temperature was up a little. I had no problems with that except she told me to hold out my hand so she could pop the Panadol onto my palm, it is very difficult to hold one's palm up and horizontal when lying flat in bed. (try it sometime) The tablet of course fell to the floor beside my urine bag she just simply picked it up with her fingers and said here "have it". I declined. I was fairly confident the area around the urine bag was not too clean, then her hands, were they clean of course she should have squeezed the tablet out of its packerage into a small disposable plastic cup. There were at least 30 of these plastic medicne cups beside my bed. I asked her to get another tablet. As she left my room her body language told me she was most annoyed. Hey its my health she is suppose to be looking after not comprising it. She did return with a tablet in a disposable plastic cup. I suspect very strongly it was the same tablet that fallen to the floor. She offered me no water to wash the tablet down. From then on I must have been in her bad books as she delighted in removing the sheet to show the female student nurses the various drains and of course the catheter (she never asked permission). This happened more than once. Of course modesty is left at the front door of the hospital, but.....!!. Then on other occasions this same nurse used me as someone for the student nurses to practice on, giving needles to. One young female student nurse said I was her very first patient she had given a needle to, she apologised if she hurt me, again this happened more than once. I did ask my fellow PCa patient in the room next door if he had student nurses practice on him, "not bloody likely" was his reply)
Anyway I could write more but enough of my ramblings.
I managed fairly well at home with my catheter but with assistance from Pauline. She was always there doing things to make life more comfortable when I woke from a nap. The catheter was due to be removed on Wed 18 May 2005 (9 days post op). As one can imagine I had a great fear of catheters from previous experiences but this one had presented no problems at all, actually it was good having it particularly at night, not getting up to the bathroom. I must admit I was fairly anxious about the removal of the catheter as a friend of mine had his catheter in for 3 weeks and he said it was the worst pain he experienced when they removed it, worse than the prostatectomy itself. Well the morning for the removal came (no X-rays for me) I was attended to by a student but an experienced tutor was standing by ready to assist. I gave permission (at least they asked) for the student to go ahead, she told me to take a deep breath, I did but eventually I had to say what was wrong because I was waiting for this "pain" I was promptly told it was out and how do I feel. I don't know, I felt good, I think.
I was waiting for the urine to leak/shoot everywhere or something, but nothing, a great relief. It was sort of good not to have the catheter. I had a cup of tea and a number of glasses of water so starting to urinate with no great difficulty so I was sent home. Actually Pauline and I went to lunch at a lovely restaurant but it was fairly painful sitting on the hard chair.
Now the recovery can begin in earnest. Started walking 10, 20, 40 mins and more per day. I faithfully wore my "pads" day and night for 12 days. Each morning and night they were changed, this was done even though they were not soiled. So I decided not to wear any more pads, of course I had been shown how to exercise the pelvic floor muscles which I promptly forgot. I had no leaking just the occasional few drops after urinating Dr Malone did promise me I would leak, things were starting to look good from that department.
I was now starting to wonder if there is going to be any action in the erection department, it felt as it was going to do the right thing but!!. It's early days. At this point in time I suppose it is a nice feeling to be able to feel "whole" again as far as a male is concerned but if not a little price to pay for life. What really concerned me was my 1st PSA result. The anxiety just kept rising and rising until I heard the results. (I feel my Anxiety Index, "AI" as I call it, was 100+ ng/ml).
24 Jun 2005 7 weeks post op: Sitting in Dr Malone waiting room is the worst, Anxiety Index really goes into the red. The mind races away thinking the worst, what if the PSA is detectable, what if. My turn arrives and as I get up slowly, a cold numb feeling overwhelms me which I can't control. I try to read Dr Malone facial expressions as to my results, "not detected" (less than 0.01ng/ml) I hear. It only takes a few seconds for the words to sink in but it seems like forever. I don't know what to say but I could feel a sense of relief. My Anxiety Index drops to a not detected level, but I try to hide joy and excitement. Dr Malone is pleased with the results, boy, so was I. He was also pleased and I feel a little surprised I was not wearing a pad, again so was I.
"Next PSA in 3 months" I hear. I can remember walking out of his surgery on some cloud that cold numb feeling I had, had given way to a warm joyous moment. Pauline and I went and had a lovely lunch with an expensive bottle of wine.
30 Oct 2005 (just 6 months post op.) I could feel my anxiety index starting to rise again as the day approaches for my next PSA. The old feelings which had been hidden for the last few months came back, I knew they would. Dr Malone calls me into his office and again his poker face doesn't give anything away; "not detected" I hear and again I don't know what to say as it sinks in. My AI drops to a not detectable level again. Dr Malone inquires as to the erection department, being a little embarrassed, I said it was pretty good 50/60% he writes a prescription for 20mg Levitra. Next PSA Feb 2006 Life is starting to feel good or nearly normal again. Time went by. I could feel my anxiety index was starting to go up so I checked the date and guess what it was nearly PSA time.
8 Feb 2006 9 months post op: This visit to Dr Malone was a little different, I already knew the PSA result from my local GP. I had made an appointment with my GP on another matter when he told me he had the results. Not detected less than 0.01ng/ml so when Dr Malone called me into his office my AI was not detectable. He was very pleased, but not as much as I was. Levitra did not seem to make a lot of difference in that department so Cialis 20 mg is prescribed. I was starting to feel completely whole again as far as a male is concerned. But as we all know we can never be 100% whole without our seminal vesicles. Life to me is more important than seminal vesicles. "See you in 6 months" says Dr Malone.
So, as I write my story, I live life a little differently than I did before my diagnosis. My cancer has brought me back to reality. Each day becomes precious, I see more joy and love even though the world sees differently. I am now more forgiving and I suppose this is the plan of the Allmighty. So as I write I must thank Dr Malone and his team for life and the warm wonderful feelings that I now have.
So until PSA #4 in 6 months everybody take care and live life, it's the only one we have.......
PS April 2006
I have read probably all the stories on YANA. I read and reread the stories/various research papers re PCa even my GP says I am reading too much. I have even asked my urologist/surgeon (Dr Greg Malone) what will be the plan of attack if recurrence happens. He was hesitant to answer. My theory is "knowledge is never a bad thing" that's the Analyst/Chemist coming out of me, what do you think?
I have a problem, this is with people particularly men do don't want to know about PCa. Very few people seem interested. A close friend of mine who had RP 3.5 yrs back here in Queensland does not want to know his PSA level, I suspect from our conversations it's going up but he appears to be in denial. As I said I have a great difficulty coming to terms with this approach.
Another friend appears not to care eventhough his PSA has gone from 7's to 17's ng/ml (doubling time)in less than 12 months. His biopsy was negative and antiboitics didn't make any difference. He is not interested in seeing another urologist eventhough I have tried to persuade him otherwise. I find this very frustating but I am now starting to learn we are all different.
Hi to all my fellow travellers.
It is now 14 months since I last updated my journey and I had a bit of a set back in May 2006.
A short summary of my journey with PCa.
Feb 2005 Biopsy positive 1 core of 12. (10%) PSA 7.2 ng/ml, 3+3 Gleason and T1c
May 2005 RP Jun 2005 PSA less than 0.01 ng/ml
Sep 2005 PSA less than 0.01 ng/ml
Jan 2006 PSA less than 0.01 ng/ml
May 2006 PSA 0.03 ng/ml - Repeat test May 2006 PSA less than 0.01 ng/ml (confirmation test)
Jun 2006 PSA less than 0.01 ng/ml
Jan 2007 PSA less than 0.01 ng/ml
May 2007 PSA less than 0.01 ng/ml
As we can see the PSA became detectable in May 2006. I had a call from my local GP saying he wanted to see me with some urgency as he had my PSA results. I knew then that my PSA had become detectable. I must admit the two hours I had to wait to see him were by far the worst moments in my life even worst than the original diagnoses. (I am not sure why) Life had been going along just fine prior to May 2006 (12 months post operation with all PSA's less than 0.01ng/ml) and I had started to feel very confident I was getting on top of this dreaded disease, no incontinence to speak of erections at 50/60% and getting better. Even my specialist Dr Greg Malone was happy and I was to see him in Sep 2006, but as I was down with my local GP on another matter (high Blood Pressure) in May 2006 I requested a PSA test and I expected it would be like the others, undetectable but alas no. I requested another PSA for confirmation. Even though the PSA was very low I was totally shattered. I will not recover from this shock particularly after the GP indicated I should get my affairs in order as he had spoken to the specialist and discussed my situation. Unfortunately for me this GP had spoken to another specialist who had never seen me, not my specialist Dr Greg Malone. This other specialist from what I understand is an expert with female problems.
If any of you reading my story have read from the start of my journey will recall my brother passed away from PCa very quickly (approx 18 months) this specialist is the very same doctor who treated my brother and advised my GP of my situation without seeing or knowing me. It leaves a sour taste in my mouth as to my brothers treatment. I am not suggesting any !!!!!!!. Sorry I digress.
My confirmation PSA came back a few days later undetectable less than 0.01ng/ml (May 2006)- actually it was Sun 14 May 2006 at 9.40am (I remember exactly).
I had another PSA in Jun 2006 (approx 6 weeks later) and it was less than 0.01 ng/ml. I saw my real specialist Dr Greg Malone and he said the 0.03 ng/ml was a lab "thing" (which I can understand being an ex lab analyst)
So in Jan 2007 (6 months later) I had another PSA and it was undetectable. By the way I also had a new GP.
I had another PSA in May 2007 and it was undetectable again less than 0.01 ng/ml) so I am hoping I am back on track.
I am fairly happy with my other bodily functions.
So until the next time let us all look forward to a brighter future.
Also I would like to say a special thanks to Terry for his support and words of knowledge and encouragement back in May 2006 when I was not thinking clearly and to Dan in central Qld and to the others who helped, thanks guys, YANA
I am only to happy to help anybody at anytime re PCa.
There is not much to report.
Dec 07 marks the 2.5 yr since RRP My last PSA Dec 07 was less than 0.01ng/ml.
I will do another PSA in Jun 2008
All take care
Hi to my fellow travellers,
Well my PSA has become detectable (0.01 ng/ml) after two years of less than 0.01 ng/ml and 3 years since RP in May 2005. Actually my PSA in May 2006 was 0.03 ng/ml but on re-analysis was less than 0.01 ng/ml. So I am hoping when I have re-analysis on 13 May 2008 it will return to less than 0.01 ng/ml. I will update when the results are in.
I must admit my mind becomes stuffed up and I just cannot think normally thinking the cancer has set up home somewhere in my body. My stress levels are in the red zone. I know a level of 0.01 ng/ml is on the edge of the assay detection but I still worry, so I hope someone will email me with the their feelings of the cancer spread and how I can cope.
Thanks to YANA and Terry
Hi to all,
I had my PSA re-checked after becoming positive in Apr 2008 (0.01 ng/ml)
Four weeks later. The re-checked PSA in May 08 was back to less than 0.01 ng/ml. It had been less than 0.01 ng/ml from RP in May 2005 except 0.03 ng/ml in May 2006: Rechecked May 2006 with less than 0.01 ng/ml All PSA's were less than 0.01 ng/ml until Apr 2008 when it became detectable again 0.01 ng/ml
So this is the second time it has become detectable only to go back to undetectable levels, so must be the "limit of detection" for the assay.
Best wishes to all, YANA
7 Nov 2008: I have my 12th PSA (since RP 2005) coming up in a few weeks, so I will post after seeing my Urologist (Dr Greg Malone)
My PSA history has been from less than 0.01 to 0.03 ng/ml over 3.5 years, up and down.
Hi to all.
I got my PSA results today and it was undetectable (less than 0.01 ng/ml)
That was my 12th PSA since May 2005 when I had my RP. I have had two false positives and 10 less than 0.01 ng/ml results. My urologist (Dr Greg Malone) no longer wants to see me but I must do my PSA yearly.
We shook hands three times as I thanked him (like saying good by to great friend, sort of sad) He did say to ring anytime for any reason if I was concerned re PSA etc. I think this doctor has a wonderful future with the Da Vinci procedure which has just been introduced in Brisbane. So I hope all others with PCa get relief and have a stress free live.
Cheers Joe (Hodge)
August 2009 PSA less than 0.01 Except for a couple of false positives everything appears ok.
Again thanks Terry for all your work on YANA.
Best wishes to all on this journey,
It's been 10 months since I updated and today I got my 14th PSA results since my RP back in May 2005 and it was less than 0.01 ng/ml (or ug/l) except for two false positives all other results have been "less thans".
There is nothing to report other than I am living life each day with a different view, gone are the clouds of despair and looking to a better day tomorrow. I lost a close friend to PCA a few months back and that keeps me thinking of tomorrows and what I can achieve. The anxiety of PSA time is still terrible, but it has to be done.
Anyway to my fellow travellers take heart and live life to the fullest.
G'Day to all in this club of PCa.
I had my 15th PSA last week since my RP in May 2005. Again it was less than 0.01 ng/ml (ug/l) I had two false positives a few year back so I am hoping all goes well in the future.
My other bodily functions are ok except I have put the "Q" in the "rack" as to the sex "thing" This is not causing any great problems for us.
I must admit the anxiety at PSA time still causes a lot of concern but I cope.
Cheers to all.
Joe (H) Australia.
Hi to All
Just an update on my PSA which is 0.01 ng/ml in Feb and when repeated in Mar still 0.01 ng/ml
I had RP back in May 2005 wirh a few false positives since then but mainly "less than" 0.01 ng/ml
I plan on waiting a few more months and I will do another PSA. (0.01 ng/ml is on the limit of detection)
I will update later when I do the next PSA otherwise all other functions are about the same, no where as good as pre RP days but ok.
All take care
Joe H Australia
Just a simple update as of 30 May 2012. I received my lastest PSA today (#18) from RP back in May 2005 (7 years) and it was less than 0.01 ng/ml. I have had four detectable PSAs from 0.01 to 0.03ng/ml which is limit of detection.
Since I put the "q" back in the "rack" I have not had any other prostate related side effects
Cheers to all
Joe H Australia
Hi To All
I just got my PSA results today, it was less than 0.01 ng/ml. That was the 19th PSA since RP in May 2005. (now nearly 8 years) I am one of those who could not live with the thought of having a known and proven tumour. I respect those who choose AS but that's not my cup of tea. In the future I am convinced "they" will find the answer to non-aggresive/aggresive PCa but for me I live very comfortably knowing I did something.
Joe's e-mail address is: firstname.lastname@example.org