A PSA of 5.4 isn't too bad, a rise from 4 to 5.4 in two years similarly is not too bad. Being 63 is bad, it means you've probably got cancer.
I have had some results told to me over the phone. I think if they are not telling you there is very likely something to discuss.
If the nurse won't tell you, you'd be a bit foolish to accept a diagnosis from a random guy on an internet forum, but based on your PSA whatever you've got it hasn't had time to do much damage.
Assuming you have cancer, you want to ask what Gleason score it is G6-G10 , what percent of the prostate is effected?
Anything above G6 and radical treatment will be on the cards. All you can really decide at the moment is if it were G6 and less than x% affected, would I accept Active surveillance (X=whatever you want)?
There isn't any point in contemplating all the possible treatments beyond Active Surveillance because that will depend on so many other things, and might turn out to be irrelevant anyway.
You need to be monitoring all communication between Hospital and GP. From 1st November 2022 NHS has to make this available via an internet app, so get signed up. I have found the NHS is not able to do joined up health care.
Good luck
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User
Two things I have learned on my journey.
1. My medical notes are not available on the app because my GP's system is not compatible. Obvious resolution to that, if it is true.
2.When I am told only not to worry, that's when I start to be concerned that either I am being patronised or they just don't know. Good news is really easy and pleasing to pass on.
User
I can see why you are so frustrated with the hospital Terance, waiting around for answers is just the worst. It really would make these situations so much easier if communication was better.
My husbands PSA was 4.3 in 2019, 5.1 in 2020. The GP did refer him at that point but covid hit and he wasn’t seen for 12 months. I knew nothing at this point but we were assured that it was very low and not really anything to worry about (so we didn’t 🤦🏻♀️). He had another PSA test in April 2021 and it had risen to 8.3. After going through all the scans and biopsy he was diagnosed 4+3=7 (later increased to 4+5) and spread to his lymph node. We were very lucky that we managed to get someone who would operate still and things are good for now.
It is still of course possible that you won’t be diagnosed with cancer (and I hope this is the case) but I thinks it’s important even if PSA is low not to ever assume that it can’t spread, the earlier you find out exactly what is going on the better.
Wishing you the best of luck for your appointment, keep us posted on how you get on 🤞🏼
User
I envy you NHS England chaps you can view details on line, not available in NHS Scotland. Communication however seems to be a common problem. I received a letter that I was going to meet my consultant for the first time next week, all it said was turn up at xxxx. On the strength of that my wife and I had a very mini break. When we got back after a very short time there was a letter giving me 5 days notice of a pre meeting appointment ( remember there is a Royal Mail strike at the moment ) If we had stayed away longer I would have missed the appointment notification and would have been put on the naughty step for a “Did not Attend” action.
I was also told at that pre meeting that my scheduled meeting with the consultant ( which I thought would just be a chat ) would involve a trip to the theatre under a general anaesthetic and I would not be released before 1630hrs, fasting from midnight etc…I don’t know why they could not have put this in the original letter. I am travelling up to the hospital on public transport and now my wife has to come and collect me during rush hour. We have also had to rearrange some activities at very short notice.
So far all the NHS staff I have met have been excellent it is just the communication which needs to be improved so I suggest you try and keep on top of it. In the past I have found a firm but fair telephone manner gets results.
Rgds
Dave
User
Originally Posted by: Online Community Memberthe consultant promised that I would receive a phone call from a nurse that Friday even if no results Yer like that happened not. So a phone call today from the nurse results are in but she will not tell me only that they have made me a appointment for Tuesday no time given.
I just want to know the results before hand to know the questions I want to ask.
lf I need further treatment will demand to change hospitals stressful enough without all this crap.
It's pretty standard for medical institutions not to release any results before a consultation, annoying as it is. At least you are now only a few days away from knowing where you stand, not that this is a pleasant vacuum to be waiting in.
If the results of the biopsy indicate you have cancer it is at an early stage so despite the poor performance of your medical people, you are still in a good position to plan for the future. Could be worth changing hospitals if they still don't seem to be responsive enough. I can't really talk on that one as I'm in Australia and our system is different to yours.
Jules
User
Originally Posted by: Online Community MemberI was also told at that pre meeting that my scheduled meeting with the consultant ( which I thought would just be a chat ) would involve a trip to the theatre under a general anaesthetic and I would notbe released before 1630hrs, fasting from midnight etc…I don’t know why they could not have put this in the original letter.
I have to wonder why they will be giving you a general anaesthetic when you've just had a biopsy. An explanation would be useful! Being told to come in for a general anaesthetic without being told what procedure they're planning is not ok.
Jules
User
Jules, I was told on Wednesday that it will be another ultrasound procedure because they want to check that the size of my prostate is suitable for brachytherapy. I’m sure they could have pointed this out in the original letter. I don’t mind having another procedure I would just have liked a little bit more notice for domestic planning purposes.
Rgds
Dave
User
Ah, I see. I'm not familiar with the use of ultrasounds under anaesthetic but I was lucky enough to have my biposy under anaesthetic and I'm very grateful for not having to take in that experience.
All the best for your upcoming appointment Dave. The right people make such a difference.
Jules
User
Originally Posted by: Online Community MemberJules, I was told on Wednesday that it will be another ultrasound procedure because they want to check that the size of my prostate is suitable for brachytherapy. I’m sure they could have pointed this out in the original letter. I don’t mind having another procedure I would just have liked a little bit more notice for domestic planning purposes.
Rgds
Dave
If they are considering brachytherapy, you have to conclude that your results are a) the biopsy found prostate cancer and b) it has been identified early.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Posting this from my en-suite room having had my a la carte NHS meal of jelly and ice cream. Because I had a general anaesthetic I have to be picked up by my wife at about 1630hrs.
The consultant has informed me that I am suitable for brachytherapy. I have my pre op on the 16th of November and I become radioactive on the 21st of November ( my late mum’s birthday🤔 ). Both letters were waiting for me in my room when I came back from recovery.
Things are indeed moving.
Rgds
Dave
User
Up and Atom, as Fallout Boy would have said!
Couldn't resist it but at least you know exactly what is happening now and your "team" is acting quickly.
Jules
User
Well got my results was hoping for a all clear however got the next best thing 🤞Active Surveillance so a PSA test in three months time along with a phone call appointment to discuss my results hopefully with no increase on my PSA levels then a test again at six months along with a clinic appointment and a DRE, then back to a test at nine months then twelfth month the same as the six month along with a MRI looking at it reminds me of a service schedule for my car
Now the hard bit tell my grown children I have Cancer at the same time to reassure them it is nothing for them to panic over that will be fun.
Have to explain my biological son and daughter who lost their 6 year old sister followed by their mother when they were just 7 and 5 years old so not sure how they will take this hopefully I can reassure them I plan to be around for a long time yet and then I have to tell my stepdaughter who is as much mine as the other two and not sure how she will handle it either as she has just had a baby four weeks ago.
Followed by contacting my brother who I have not spoken to for over twelve years and tell him to get tested damn I am a nice person😇.
Well that’s all folks for the next three months.
User
Did you get your results from your biopsy? Active surveillance is decided mostly from the size and location of your cancer, seen on MRI (Pirads) and the Grade of your cancer Gleason classification following your biopsy.
You need the 2 results to understand why they put you on AS.