Hello gang! Wish I wasn't here but nevertheless thanks for reading.
The details of my diagnosis are:
PSA 0.9 ng/ml
Biopsy volume 1%
Basically since diagnosis I have been told that surgery is not really an option because of previous serious pelvic injuries and that brachytherapy may be too harsh because of history of urinary tract problems and IBS (Irritable Bowel Syndrome). They don't consider hormone treatment a good option long term because at 52 I'm "very young" so it looks like watchful waiting or EBRT (External Beam Radiation Treatment).
Yet another problem! Was told last week the cancer is non secreting and that whatever decision I come to as regards treatment makes monitoring at best very difficult because of the "dodgy" PSA. After I had been told about PSA I feel a bit like a lost cause/ ticking time bomb and wondering if they can't monitor treatment what's the point in it or do I take a chance with watchful waiting and hope that it's a "slow grower".
Anyway enough of my moaning and hope everybody on the site is doing ok.
Thanks, Mick (England)
Sorry about the lack of postings but I've been on a bit of a downer, not just with the cancer, but life in general! Must be that mid life crisis thing and of course the great British red hot summer (ha-ha) doesn't help. Even thought about discharging myself and seeing if it is true "you can live forever with prostate cancer".
As for the prostate not much movement really. The oncologist has put my details on disk and is passing it to colleagues for opinions. Basically it feels like I'm been trawled round the National Health Service. originally they said the PSA wasn't working but there as been a shift there it has gone from 0.9 to 1.4. Not necessarily in the right direction but maybe it's a good sign for future monitoring! I have to go back in August and maybe then they will want some sort of decision one way or the other? She seems happy at the moment with monitoring but I get the gut feeling she would prefer me to go for radiotherapy or brachytherapy.
I asked about intermittent hormone treatment but she said at 53 I was too young and long term it could prove to be too toxic . Don't know if it has been a deliberate policy or not but because this has gone on since January. I now feel a bit worn down with it and feel like saying to them just do what you have to and let me move on or maybe that's just me being cynical and paranoid!!
All the best and I will update when I have been back to clinic in August.
Just been to clinic today August 21, 2008 and feel a bit more optimistic. Originally they thought the cancer was non-secreting but last visit the PSA was 1.5 this time it was back down to 0.8. The oncologist now seems to think that it is secreting so the PSA will now be able to be used for future monitoring.
Although she would prefer me to have some form of "treatment" preferably radiotherapy or brachytherapy at this moment in time she has reluctantly agreed to monitoring now that the PSA can be part of the " plan ". They have even revised the staging figure from T2 to T1c.
The numbers I got from her are as follows:
Prostate Volume 26 gm
Biopsy Volume < 1%
All in all I think I have gone for the right decision, only time will tell I suppose, but having read Terry's story and others on the web site I don't think it is time for any dramatic "quality of life " decisions just yet ? I think the next thing now is to "move on" and the next thing will be diet/lifestyle. I don't know if I can be disciplined regards diet but I think there is room for improvement shall we say. At the moment I seem to have got lost in a sea of opinions about vitamin E but I will carry on researching and hopefully come up with answers about it and the other antioxidants that keep appearing in the newspapers and on TV.
Anyway all the best
I went to the oncologist in December : PSA has risen to a staggering 0.9 so she reluctantly seems to be going down the monitoring route. I don't have to go back till August and if everything still ok to have more biopsies in 2010.
I get the distinct impression she would prefer me to have some form of treatment namely radiotherapy but as it appears small and not too aggressive she said they may as well let things ride. Still feel I'm delaying the inevitable but after seeing an ex workmate of mine recently who had just had the operation I'm not that bothered about playing the waiting game having seen the side effects he has been left with!
Anyway on a personal note thanks very much for all the information and support I got last year. Without that information and advice I feel sure the oncologist, who by the way the way is a wonderful woman, would have tried to bully me down the intervention road.
Just a quick update after today's visit to the cancer clinic. No change really the latest PSA was 0.7 so the doc seems quite happy to continue monitoring with a view to more biopsies next year ( March ). Quite pleased but still feel that all I am doing is delaying the inevitable ie : radiotherapy, but bearing in mind the possible side effects I accept that while everything is still " small scale" it is probably best left alone.
I feel quite fit at the moment but mentally I am struggling a bit due to my next door neighbour ! He is mid to late seventies with advanced prostate cancer that has spread to his kidneys, liver etc and has been told recently that he has about three months left and every time I see him I can't help but think I wonder if that will be me several years down the line. Anyway a visit from the grand kids soon brings me to my senses and who knows what the boffins might discover to beat this thing!!
Just a quick update following my recent clinic visit. Not much change really PSA still 0.8 so the monitoring to continue. I have got to have some more biopsies in 2-3 months and the oncologist will re-look at things after the biopsy results! I still think they want me to start radiotherapy but I will consider all the options when I get the biopsy results.
Generally feel quite well and fit but this bloody thing is still playing mind games. Sometimes I feel happy to stay with the monitoring and then the doubts creep in and wonder if I should start treatment while it is still relatively small and hope that in time to come I won't regret acting quicker.
Anyway the grandkids soon bring me out of the day dreaming and quickly bring me to my senses as we empty my wallet in Toys R Us !! The whole diet and lifestyle thing as gone a bit pear shaped during the winter but hopefully a great summer with plenty of salads will get that back on track.
Anyway hope everybody in the group is as well as possible and here's hoping for a reasonable 2010.
Recently had my 12 monthly biopsies and it seems everything is AOK at the moment. They did a different part of the prostate this time and they tell me there is no sign of cancer or even pre-cancerous tissue. Despite the outcome grumpy old me still thinks all I am doing is delaying the inevitable but I really am glad that I originally stuck out against them wanting to dive in and perform treatment and all the possible "quality of life" issues that may have brought.
I don't know about things at your end but there seems to have been a real change in attitudes over here. They really do seem to have tuned in to the detecting the "tigers from the pussycats" theory. After my original diagnosis it felt like they couldn't wait to begin treatment but now they seem a lot more laid back and prepared to listen and go along with monitoring.
Anyway trying really hard to put things to the back of my mind and get on with life and the grandchildren (7 years and 12 months) soon see to that thankfully.
Catch you later. Mick Smith
[In response to a reminder Mick said:]
Not forgotten you or ignoring you but I am due at clinic on 6th Feb. so I will hopefully be able to give you a better picture of things after the appointment.
Here I am at last. Reason for the delay is they have had me doing three PSA blood tests over the space of February. As you are aware the PSA can be up and down like a brides nightie [it can indeed – see PSA Experiment for example] and as mine had dropped to 0.6 they wanted to see if it was a "freak" but after the third one was still 0.6 they have decided that's where I'm at and that its great news that it has dropped. That's it till later in the year when I have the yearly biopsies. Can't wait !! Ha-ha
I've been taken off the oncologist's appointments and moved to the " stable prostate cancer clinic". It seems this new clinic is for blokes who have been on monitoring for 3 yrs or more. No more having to attend clinic they ring the house at an agreed time and have a quick chat etc.
Cynical me. I don't think I have been put on this clinic because of my current medical condition but more likely because the NHS (National Health Service). is skint. [To be fair to the NHS there is a growing world-wide recognition that men with a diagnosis similar to Mick's may have been treated unnecessarily in the past, with some loss of quality of life.] I suppose the good point is that the more they detect the more they have to treat and if some blokes condition is poor it is better for him to see the "experts" and let me have a quick phone call from the urologist nurse.
Hi guys. Just had the newfangled clinic phone appointment at home. Sure beats hanging around for ages at the local hospital. latest PSA 0.7 so very little change and the next thing in a few months is the wonderful biopsies-deep joy.
Anyway that's five years now since diagnosis and for any new guys having a look on the site there really is life after diagnosis. No doubt just like me your head will be spinning and your world will have stopped but five year down the line the most the PSA has spiked at is 1.4.so there is life after diagnosis.
Do your research get good advice and if you can crack on. Some of the new research they are doing seems to hold a half decent outlook and I am sure this bleeding thing will be cracked.
Ok guys catch you later. all the best. Mick Smith
Hi guys - just got an appointment to see urologist early September, so will give a fuller update then. Other than that, everything seems ok !!
Catch you mid-Sept. All the best, Mick Smith
Hi guys just been to clinic. They wanted to see the whites of my eyes this year and attend the clinic to see the urologist. The good news is the p.s.a. remains at 0.7. Yet another new doc this time and although he was ok with me remaining on active surveillance he did seem to be pushing for radiotherapy. He rattled on about the cut off point was 75 yrs old so when I convinced him I had a few years to go yet he backed off.
Got to have biopsies in a few weeks so hopefully will be able to find out about volumes etc after. The only real side effects over the last few years is the onset of prostatitis. Don't know if it is linked to the cancer but at the moment it usually wallops me about twice a year. Normally throw ciprofloxacin down my neck for 28 days and thankfully that seems to settle it down.
At times the pc still plays mind games like what if or what might be but 5 yrs down the line the best medication is the grandkids. They drain my bleeding wallet like a leaking tap but no time for grumpy old grandad to sit and feel sorry about things. Anyway guys again if you are new to the site have a real good browse through this site there is some great advice and stories that will hopefully help keep your chin up and not feel like life has come to a full stop.
All the best lads and I will update again after the biopsies. (can't wait. ha ha)
Hi guys. Sorry for the lack of update! Well went for the biopsies and the results are practically the same as the August 2008 biopsies so everything seems pretty stable at the moment. Touch wood. The good news is that they said they were probably done with biopsies for time being and if anything else had to be done they would use scans. Thank God for that!!
Have been having lousy abdominal pain for a while so they sent me for a flow test which showed I was emptying the bladder fully but there was some enlargement of the prostate and this was probably restricting the bladder neck hence the pain.so they decided to put me on alpha blockers (Tamsulosin) but it only took me about 5 days to fall out with those due to the side effects. They made me feel absolutely crap a complete zombie and when it got to the stage that I was even struggling to play with the grandkids it was time to look at other options?
I did a load of research and finally decided to give saw palmetto a try. I take one tablet a day 1500mg and so far no problem. No more abdominal pain and peeing like a good un.
I saw another urologist last week the best so far and I mentioned to him the saw palmetto fully expecting a volley about cranky drugs etc., but his attitude was brilliant and he basically said whatever you are comfortable and happy with go with it.
Anyway enough of my waffle just to say things gladly seem settled at the moment so any newcomers reading this keep your chin up and try to be positive.
Cheers. All the best. Mick
Hi guys - sorry about lack of postings but due at clinic early December, so will give fuller update then.
Hi guys. another 6 months gone by and another visit to the clinic. Almost 8 yrs since diagnosis and PSA still thankfully plodding on at 0.8. urology nurse happy with everything and basically at the moment "what works for you mick carry on".
Told you I had started taking saw palmetto for BPH well I have added to that pumpkin seed tablets and again touch wood the BPH is being quite manageable. Have got some doxazosin 1mg in reserve and with doctor's blessing if it flares up I take these for two or three days to bring it back under control and this mix and match really does seem to be working at the moment.
For any newly diagnosed blokes out there the website homepage says it all DO NOT PANIC. 8 yrs down the line with a bit of research and reasonable advice backed up I have to say with a good open honest clinic this thing is manageable.
Anyway have a good Christmas fellas, grandkids already drained the wallet, and will be in touch next year.
Hi guys, got clinic in early February, so will update fully then.
Mick's e-mail address is: email@example.com