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User
Posted 21 Jul 2026 at 12:11

Apologies if this post is duplicated 

 

i posted earlier and received some really helpful responses, thank you.

 

i now have my results (PSA 5.5, Gleason 3+4, in my initial consultation I was told I was T2, yesterday the nurse said the radiologist said I am T3a) 

 

I am also booked for a bone scan, not sure if this is standard procedure?

 

I am trying hard to manage my emotions but finding it totally absorbing, is this normal too?

 

one of the earlier responses suggested I should feel more in control once I have a plan and hopefully feel this isn’t absolutely life threatening.

 

thanks

Graham

User
Posted 21 Jul 2026 at 14:20
Hi Graham

John is totally correct - it is mind-blowing at first, so many thoughts whirl through your brain at the strangest of times - especially at night.

It does get easier as the treatment pathway is confirmed and you move on into actually doing something about this awful disease.

The treatments available now are so much more advanced than say 10 years ago - so although I was in a dreadful state at the beginning (PSA - 953!) I am after 10 months easier in my mind about it all - having had triplet therapy. I am to discuss RT at my next appointment.

I do however take steps to manage my minds wanderlust and have utilised yoga and meditation as an aid to calm. The Headspace App is also useful - the Coping with Cancer course I found really helpful.

Do remember that you can see our own profiles by clicking on the avatar or our names.

Best wishes - stay positive

CeePee

User
Posted 21 Jul 2026 at 20:21
GrahamBT,

The answers above are perfect, but I will just address your question on the Bone Scan. Yes this is perfectly normal and does not mean they think you have spread to your bones. They are just ensuring the full extent of the cancer is known. I am not medically trained but when I was sent for my bone scan in May 2024, after my diagnosis in March 2024, I was told it was routine. So, please don't let your mind make it worse than it currently is. Sadly, the diagnosis phase is a real roller coaster and I doubt there are many guys who don't have the issues you have/had.

I so agree that having a treatment plan helps and I found that focussing on the next step was more helpful than looking back at the diagnosis and letting that panic me.

I so hope and pray that you soon have a treatment plan and that is a success.

User
Posted 21 Jul 2026 at 20:44

Hi Graham

A wife here. Yes it's all very stressing at first.

As John said wisely we found it exactly the same. It's a few world of all kinds of fears and PSA.

Yes the scan is standard procedure. I'm guessing a PET scan. 

I believe it would be very rare for it to have progressed with a PSA as low as 5.5. I think it's more possible around 20 or so. But waiting for results is always stressful.

I wish you well and you will work your way out of this tunnel. I hope you have some support around you too 

User
Posted 23 Jul 2026 at 19:36
Hi Linkbekka

Personally I found the Headspace app to be just the thing for me, it takes a bit of getting used to and getting into the mindset to meditate but this old dog learnt a few new tricks! Their Coping with Cancer course was really good. You do have to pay about £50 pa but I have found it very worthwhile.

I also have a "Snoozeband" which is an eye pad with vey flat earphones built in so you can sleep with it on, just bluetooth to your phone and put some relaxing sounds on - I use Radio 3 Unwind now after I really messed up my Spotify algorithm!!

Please continue to use this forum to vent! You are amongst friends and we have probably already been there...

Best wishes - stay positive

CeePee

User
Posted 23 Jul 2026 at 20:28

I am sorry this has dropped on your lives. I am not a medical person, just the wife of a man with the same disease. 

I have the belief that the hormone therapy halts it pretty quickly. In the circumstances it's good you've already started. Do you know which injection? They put it in reverse fairly soon. In 3 weeks or so there should be a drop in PSA. The level of hormone injection is pretty steady for the 3 months . It doesn't tail off etc . I'm no expert but when you're a bit clearer on things you may feel bit more steady. 

User
Posted 23 Jul 2026 at 20:37

Hi Linkbekka

I can't imagine really how worried this must make you. You're in limbo at the moment. But I've just looked at your profile.

PSA 8. My husband's was 7.1. In 3 weeks it dropped to 1.7. He had a Decapeptyl injection.

Last PSA was 0.2

I believe it is unlikely to have spread far when below PSA 20 but that is a general rule.

There are also new drugs just in use including Abiraterone.  

The consultants will consult and work out a best route for you 

 

User
Posted 24 Jul 2026 at 11:26

Originally Posted by: Online Community Member
My newly adopted mantra, which I say to myself when my mind races in negative directions - which is more than often - is “surrender to the process”.  

That is a fantastic mindset to have, and one that I've tried to adopt. However, sometimes the process fails.  Occassionally, I needed to be politely assertive to get 'things done' and get results in a timely fashion. 

User
Posted 24 Jul 2026 at 11:45

Strange day today, had my scans yesterday and now feeling really really down today ☹️

I’m guessing I’m stuck on this emotional rollercoaster until I get a clear diagnosis and forward plan. 

User
Posted 25 Jul 2026 at 14:30

Yes it’s on the BBC iplayer

User
Posted 31 Jul 2026 at 06:18

Hi Graham.

It`s a very rough ride, isn`t it...? 

I had my scans over the last three weeks and waiting for the results has been emotional and mental hell. I convinced myself I was looking at a horror story.

A few days ago I got a message to say I have a meeting scheduled for the 25th August. I told my wife i simply cannot wait another month for an answer it will destroy my brain. So I rang the hospital and told them I must speak to someone.

A kind and caring nurse rang back. She told me all my scans were clear. I was utterly shocked. My wife and I both broke down.

But my point is: Surely the hospital could have told me that without me having to ring up.Would they have let me suffer for a month...? So always best to ring with any serious concern as you might get an answer earlier. They are busy -- but they do seem to understand what we are all going through.

Fingers crossed for your result. Stay strong...

User
Posted 02 Aug 2026 at 12:34

I start getting emotional even a couple of weeks before each of my husband's tests but try to keep this to myself because I know he needs me to be strong. Wishing you strength and the best for tomorrow.

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User
Posted 21 Jul 2026 at 13:34

Hello Graham,

 

Sorry you find your self here. Yes it is normal to find this all totally absorbing and unable to concentrate on anything else. It can feel terrifying to begin with. I and many other felt exactly like this.

But like others have said once a plan is in place you really do feel better that something is being done. Also bone scan, totally normal. 

Your grading, PSA and Gleason all point to very treatable options for curative intent.

Do ask anymore questions whenever you need to, lots of helpful on here.

 

All the best 

John

 

 

User
Posted 21 Jul 2026 at 14:20
Hi Graham

John is totally correct - it is mind-blowing at first, so many thoughts whirl through your brain at the strangest of times - especially at night.

It does get easier as the treatment pathway is confirmed and you move on into actually doing something about this awful disease.

The treatments available now are so much more advanced than say 10 years ago - so although I was in a dreadful state at the beginning (PSA - 953!) I am after 10 months easier in my mind about it all - having had triplet therapy. I am to discuss RT at my next appointment.

I do however take steps to manage my minds wanderlust and have utilised yoga and meditation as an aid to calm. The Headspace App is also useful - the Coping with Cancer course I found really helpful.

Do remember that you can see our own profiles by clicking on the avatar or our names.

Best wishes - stay positive

CeePee

User
Posted 21 Jul 2026 at 20:21
GrahamBT,

The answers above are perfect, but I will just address your question on the Bone Scan. Yes this is perfectly normal and does not mean they think you have spread to your bones. They are just ensuring the full extent of the cancer is known. I am not medically trained but when I was sent for my bone scan in May 2024, after my diagnosis in March 2024, I was told it was routine. So, please don't let your mind make it worse than it currently is. Sadly, the diagnosis phase is a real roller coaster and I doubt there are many guys who don't have the issues you have/had.

I so agree that having a treatment plan helps and I found that focussing on the next step was more helpful than looking back at the diagnosis and letting that panic me.

I so hope and pray that you soon have a treatment plan and that is a success.

User
Posted 21 Jul 2026 at 20:44

Hi Graham

A wife here. Yes it's all very stressing at first.

As John said wisely we found it exactly the same. It's a few world of all kinds of fears and PSA.

Yes the scan is standard procedure. I'm guessing a PET scan. 

I believe it would be very rare for it to have progressed with a PSA as low as 5.5. I think it's more possible around 20 or so. But waiting for results is always stressful.

I wish you well and you will work your way out of this tunnel. I hope you have some support around you too 

User
Posted 23 Jul 2026 at 18:56

Had my scans today (two sets) is this normal practice?

 

I guess I have an agonising wait now for the results :(

 

User
Posted 23 Jul 2026 at 19:09

GrahamBT I had a CT scan a couple of weeks back -- and a bone scan last week. I was told that the results could take up to 6 weeks.

 

It is unbearable. I can`t think of anything else. It dominates every second. I have convinced myself it will be very bad news.

 

Gleason 9. Cambridge 5. T3. The cancer is cribriform...which means it is like a honeycomb and breaks up very easily and is more than likely to have spread. I do have some lower back pain and am losing weight.

I can`t believe this is happening.I don`t know how to cope. I won`t last six weeks.

 

 

 

User
Posted 23 Jul 2026 at 19:11

It’s really hard isn’t it. I’m going for a walk soon to hopefully get some headspace 

User
Posted 23 Jul 2026 at 19:29

If I keep busy there are moments when it leaves my mind...but when it soon comes back it is devastating all over again.

My life and my wife`s life has changed forever now. We are keeping it from our children as long as possible. That adds to our distress as the hospital visits build up.

I have started hormone therapy but waiting 3 months for the second injection worries me with an aggressive cancer...

Sorry my fears don`t help anyone but I have to let it out...

User
Posted 23 Jul 2026 at 19:36
Hi Linkbekka

Personally I found the Headspace app to be just the thing for me, it takes a bit of getting used to and getting into the mindset to meditate but this old dog learnt a few new tricks! Their Coping with Cancer course was really good. You do have to pay about £50 pa but I have found it very worthwhile.

I also have a "Snoozeband" which is an eye pad with vey flat earphones built in so you can sleep with it on, just bluetooth to your phone and put some relaxing sounds on - I use Radio 3 Unwind now after I really messed up my Spotify algorithm!!

Please continue to use this forum to vent! You are amongst friends and we have probably already been there...

Best wishes - stay positive

CeePee

User
Posted 23 Jul 2026 at 19:54

Hi Graham,

I am finding myself wishing myself into a coma to get through the waiting days but this is not going to happen so I am trying to find other distractions, or I would prefer to say coping mechanisms. Distractions only last a short before the mind returns to the same point. 

My mind is eased more effectively by the comforting thoughts that there are so many other wonderful, helpful, and caring people sharing the burden of the journey and that, similarly, there are so many encouraging and positive stories from members whom were given far from encouraging diagnostic news - certainly more than I expected.

My newly adopted mantra, which I say to myself when my mind races in negative directions - which is more than often - is “surrender to the process”.  

From the information I am absorbing at the moment, treatment advances have made enormous leaps even compared to just a decade ago.

Best wishes,

R

 

User
Posted 23 Jul 2026 at 20:28

I am sorry this has dropped on your lives. I am not a medical person, just the wife of a man with the same disease. 

I have the belief that the hormone therapy halts it pretty quickly. In the circumstances it's good you've already started. Do you know which injection? They put it in reverse fairly soon. In 3 weeks or so there should be a drop in PSA. The level of hormone injection is pretty steady for the 3 months . It doesn't tail off etc . I'm no expert but when you're a bit clearer on things you may feel bit more steady. 

User
Posted 23 Jul 2026 at 20:37

Hi Linkbekka

I can't imagine really how worried this must make you. You're in limbo at the moment. But I've just looked at your profile.

PSA 8. My husband's was 7.1. In 3 weeks it dropped to 1.7. He had a Decapeptyl injection.

Last PSA was 0.2

I believe it is unlikely to have spread far when below PSA 20 but that is a general rule.

There are also new drugs just in use including Abiraterone.  

The consultants will consult and work out a best route for you 

 

User
Posted 24 Jul 2026 at 10:31

Having done some -- too much -- research it appears the PSA level as a guide to the severity of the cancer is misleading. My moderate PSA of 8 has gone out the window when I look at Gleason 9 Cambridge 5 T3 cribriform aggressive cancer. 

After my initial DRE the consultant gave me a too favourable opinion, almost assuring me with a PSA o0f 8 the cancer would be slow growing, confined to the prostate and treatment would only be monitoring. Wrong.

On a different note: Please check out Prost8.org.uk  They are a charity run by experts giving information on focal therapy. But I think it is only suitable if you have localised cancer -- and is only available in a few areas. But I submitted my diagnosis and got a sympathetic and knowledgeable reply from one of their consultants.

My injection was Leuprorelin.

User
Posted 24 Jul 2026 at 11:26

Originally Posted by: Online Community Member
My newly adopted mantra, which I say to myself when my mind races in negative directions - which is more than often - is “surrender to the process”.  

That is a fantastic mindset to have, and one that I've tried to adopt. However, sometimes the process fails.  Occassionally, I needed to be politely assertive to get 'things done' and get results in a timely fashion. 

User
Posted 24 Jul 2026 at 11:45

Strange day today, had my scans yesterday and now feeling really really down today ☹️

I’m guessing I’m stuck on this emotional rollercoaster until I get a clear diagnosis and forward plan. 

User
Posted 24 Jul 2026 at 12:21
GrahamBt Ditto. Felt terrible after scans -- and hate hospitals. Currently going fast on that roller coaster -- but wish it would go faster towards a definitive diagnosis which I was told could take six weeks. Unbearable I think.....
User
Posted 25 Jul 2026 at 13:24

I watched the interview with Chris Hoy yesterday. I’m not going to lie, it was hard to watch and at times I broke down, really broke down, but it left me feeling more positive and less emotional, for now …

has anyone else watched it and found it helpful?

 

User
Posted 25 Jul 2026 at 13:26

Do you have a link for it please 🙏 

User
Posted 25 Jul 2026 at 14:23
Hi

I think the one being referred to is on BBC iPlayer, so search Chris hoy?

Best wishes - stay positive

CeePee

User
Posted 25 Jul 2026 at 14:25

Thank you x

User
Posted 25 Jul 2026 at 14:30

Yes it’s on the BBC iplayer

User
Posted 25 Jul 2026 at 14:47
I couldn`t watch that. I`d never get any sleep.....
User
Posted 25 Jul 2026 at 16:25

It was a really hard emotional watch , but given the diagnosis he received it is very positive. They are managing his treatment effectively at the moment. 

 

User
Posted 29 Jul 2026 at 16:38

I have a meeting on Monday to review my scans, really stressed, this part is awful ☹️

User
Posted 31 Jul 2026 at 06:18

Hi Graham.

It`s a very rough ride, isn`t it...? 

I had my scans over the last three weeks and waiting for the results has been emotional and mental hell. I convinced myself I was looking at a horror story.

A few days ago I got a message to say I have a meeting scheduled for the 25th August. I told my wife i simply cannot wait another month for an answer it will destroy my brain. So I rang the hospital and told them I must speak to someone.

A kind and caring nurse rang back. She told me all my scans were clear. I was utterly shocked. My wife and I both broke down.

But my point is: Surely the hospital could have told me that without me having to ring up.Would they have let me suffer for a month...? So always best to ring with any serious concern as you might get an answer earlier. They are busy -- but they do seem to understand what we are all going through.

Fingers crossed for your result. Stay strong...

User
Posted 02 Aug 2026 at 11:36

Got my scan results appointment tomorrow, feeling really emotional and low today ☹️

I guess this is normal, fear of the unknown 

User
Posted 02 Aug 2026 at 12:34

I start getting emotional even a couple of weeks before each of my husband's tests but try to keep this to myself because I know he needs me to be strong. Wishing you strength and the best for tomorrow.

User
Posted 02 Aug 2026 at 12:38

GrahamBT You know we will all be waiting to hear the outcome of your meeting.

Remember whatever happens there are multiple ways of dealing with this. One way or another -- easy or tough -- you will get through this.

 
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