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User
Posted 18 Jul 2024 at 10:40

Hi All,

New to the community and felt it was time to introduce myself and set the scene. So my issues started back in May of this year when I had a digital exam for suspected haemorrhoids that revealed an enlarged Prostate so a PSA test (well 2 of them) was arranged returning results of 3.8 and 4.1.

Based on these results an MRI scan was arranged followed by a biopsy. I got the results of the biopsy on 16/07/2024 and was informed I have high risk cancer with a Gleason score of 4+4.

I am now going for a CT scan on 21/07/2024 to determine if it has spread or not. To say I'm petrified with what is happening is an understatement.

One thing I have noticed is a lot of posts mention a T grade (T3b and the like) I don't have this yet and has not been mentioned, is this something that comes as part of the further scans?

One thing I will say is so far I'm really impressed with this community and all the support, help and guidance available and I intend to be a regular visitor so apologies in advance as I'm sure i'll have many questions.

Dave

User
Posted 18 Jul 2024 at 18:56
Risca

There is no need to be petrified. Yes it seems scary but try and be positive, keep looking forward, there are very good treatment options available. There are loads of people on this site with very similar diagnosis to you and they've got through it and are now just getting on with life

I had PSA of 5 and 3+4 Gleason. I didn't get my T score (pT2c) until after surgery so maybe it's determined once the prostate is removed and examined.That was nearly 5 years ago

Gerard

User
Posted 19 Jul 2024 at 09:32

Hi Dave,

Sorry to see that you've had to find us, but Im glad that you have. You'll get lots of support here, from others who've faced what you're now facing.

If it's any comfort to you, I was diagnosed Gleason 8(4+4), which was later upgraded to Gleason 9(4+5) , T3a, the cancer had just breached the prostate capsule.

I had robotic surgery and 17 months later my PSA is undetectable.

I'm worse than you for always wanting to plan things, a self confessed control freak, but I've learnt with this disease things are often beyond your control. You have to put your faith in clinicians and take and deal with things one step at a time.

As Chris said I'd have thought you'd been given a provisional cancer staging after your MRI a radiological staging. 

Best of luck mate.

User
Posted 18 Jul 2024 at 10:40

Hi All,

New to the community and felt it was time to introduce myself and set the scene. So my issues started back in May of this year when I had a digital exam for suspected haemorrhoids that revealed an enlarged Prostate so a PSA test (well 2 of them) was arranged returning results of 3.8 and 4.1.

Based on these results an MRI scan was arranged followed by a biopsy. I got the results of the biopsy on 16/07/2024 and was informed I have high risk cancer with a Gleason score of 4+4.

I am now going for a CT scan on 21/07/2024 to determine if it has spread or not. To say I'm petrified with what is happening is an understatement.

One thing I have noticed is a lot of posts mention a T grade (T3b and the like) I don't have this yet and has not been mentioned, is this something that comes as part of the further scans?

One thing I will say is so far I'm really impressed with this community and all the support, help and guidance available and I intend to be a regular visitor so apologies in advance as I'm sure i'll have many questions.

Dave

User
Posted 18 Jul 2024 at 19:36

You will always get a revised /confirmed T score after surgery when the lab tests have been completed on the removed prostate. However you should also have a T score following the MRI/bone scan/biopsy. However they may well be holding back on that until the CT scan is completed. This is more likely a precautionary exercise rather than expecting to find spread. Good luck

User
Posted 19 Jul 2024 at 06:34

Hi Risca,

Welcome to the club that nobody wants to join, but it’s a good first step that you have as on here you will find the knowledge and support that will help you get through this.

Yes you will be scared…everyone IS when they are diagnosed and the waiting is the worst part. Waiting on tests, waiting on test results, waiting on treatment plans…and so on. Try and keep yourself busy and active, be kind to yourself, give yourself lots of treats, Do nice things with your family.It won’t stop you thinking about it but it will help keep your mind off thinking the worst. Once you have your full diagnosis and a treatment plan in place you should feel much better. In the meantime if you’re struggling seek out some support through something like Maggies if there is a centre near you, for me it has been transformational in how I’ve dealt with this disease. And please don’t think ‘It’s not for me’ (as I did for 6 months after diagnosis), go along and speak to them(no appointment needed, just walk in) and see what support groups they have. Also the Specialist nurses on this site are wonderful, they will make time for you and are so knowledgeable' so give them a ring.

I was T3BN0M0 so it had spread the the Seminal Vesicles…I didn’t even know what they were until I got this disease🀣🀣🀣. My PSA was 36 and Gleason 4+3. 2 years since treatment started my PSA is undetectable. So….there is plenty of hope for you that you will be cured. Try and stay positive avoiding Dr Google at all costs and use THIS site as your source of information.

I wish you all the best on you journey, there will be bumps along the road but don’t let this disease define you!

Derek

User
Posted 25 Jul 2024 at 10:49

Originally Posted by: Online Community Member

Have made the decision that this thing aint gonna drag me down, it might cause changes in life, it might never end and always be part of my life, but the one thing it will never do is take over my life.

I try my hardest to think positively, but in my opinion, you'd have to be Superman to escape completely unscathed.

PCa to me, is like an unpleasant mother-in- law who visits too often, for too long and is very difficult to get rid of.πŸ˜‰

 

 

Edited by member 25 Jul 2024 at 12:49  | Reason: Typo

User
Posted 01 Aug 2024 at 08:19
So minor update is that after appointment with Oncologist yesterday there is no update!!!!!!

Seems I've been the victim of an admin cock up and should not have been there until after the results of the PET scan are available (I did phone up and query this but was told to attend as there could be things to discuss).

Left me feeling a little bit down today with all the waiting (yes yes I know you guys have advised this is the worst bit lol).

Oh well, PET scan today and hopefully see the Oncologist in a couple of weeks.

The really daft thing is I feel I'm prepared (or at least come to terms with) for whatever treatment plan is advised (even if it is treatment for life), I just want to know and get on with things.

Dave

User
Posted 01 Aug 2024 at 08:50

Morning Dave.

Sorry to hear about the cock up. It's not good enough.

I'm due an 18 month post op follow up call from my CNS soon. I know for a fact she'll not have accessed my last 3 PSA checks. But at least I'll be able to tell her that the results were fine and I'm doing OK. She'll then be able to tick a box saying I've been done. 😁

User
Posted 01 Aug 2024 at 20:48

Adrian56,

Yes, 'box-ticking exercise' sounds familiar...

Best wishes,

JedSee.

User
Posted 14 Aug 2024 at 14:05

So, update time. Just got back from appointment with Onco where it was explained to me that about 5% of men have a condition where the PET scan does not show any signs of cancer, even the cancer that the biopsy has proven to be there, let alone any spread - Yup, I'm in that 5% so no clearer at this point as to if the little sod is confined to the prostate or not.

Looking to progress now on the assumption that there is no spread and plan treatment on that basis. Been offered the options of surgery or RT (with Brachy for good measure) + HT for 3 years.

Trouble is I really can't make up my mind on what option appeals the most (or should that be appeals the least?)

The "bish bash bosh" of surgery to get the dam thing out appeals but the risk of long term incontinence and ED puts me off. On the other hand having the treatment ongoing for 3 years and the risk of less severe but 3 years worth of side effects puts me off this option.

Daft as it seems, a part of me wishes there hadn't been options, just a simple case of cracking on with what's available.

Dave

User
Posted 14 Aug 2024 at 16:57

Hi Dave, 

Decisions, decisions, decisions eh. Not sure I can help you, it’s a case of doing your research, assessing the risks, impact of treatment and side effects and then going for it, I think. There are loads of threads on here discussing the dilemma faced when it comes to choosing treatment options. 

I’m on the ‘3 year HT & chemo & radio (incl brachy) path, just over a year into it. My path was set as my PCa is locally advanced, I just had one decision to make over whether to have brachy aswell or not. As I type this I’m dripping in sweat due to one of the million side effects of HT and must admit at the moment that the ‘bish bash’ option would have big appeal if it had been available to me.

Best of luck whichever path you choose, I feel for you it’s a difficult decision to make 😬🀞🀞

All the best

Spongebob

User
Posted 06 Sep 2024 at 11:58

Hi Dave

I thoroughly recommend the "Squeeze Men" app for the iPhone/Android. Costs £2.99 and it really helps with remembering and performing the exercises. 

User
Posted 06 Nov 2024 at 10:26

Hi Adrian,

Funnily enough you were the first person I thought of (outside the family) when I got the results. Couldn't believe how similar a path we have trod.

Dave

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User
Posted 18 Jul 2024 at 18:56
Risca

There is no need to be petrified. Yes it seems scary but try and be positive, keep looking forward, there are very good treatment options available. There are loads of people on this site with very similar diagnosis to you and they've got through it and are now just getting on with life

I had PSA of 5 and 3+4 Gleason. I didn't get my T score (pT2c) until after surgery so maybe it's determined once the prostate is removed and examined.That was nearly 5 years ago

Gerard

User
Posted 18 Jul 2024 at 19:36

You will always get a revised /confirmed T score after surgery when the lab tests have been completed on the removed prostate. However you should also have a T score following the MRI/bone scan/biopsy. However they may well be holding back on that until the CT scan is completed. This is more likely a precautionary exercise rather than expecting to find spread. Good luck

User
Posted 19 Jul 2024 at 06:34

Hi Risca,

Welcome to the club that nobody wants to join, but it’s a good first step that you have as on here you will find the knowledge and support that will help you get through this.

Yes you will be scared…everyone IS when they are diagnosed and the waiting is the worst part. Waiting on tests, waiting on test results, waiting on treatment plans…and so on. Try and keep yourself busy and active, be kind to yourself, give yourself lots of treats, Do nice things with your family.It won’t stop you thinking about it but it will help keep your mind off thinking the worst. Once you have your full diagnosis and a treatment plan in place you should feel much better. In the meantime if you’re struggling seek out some support through something like Maggies if there is a centre near you, for me it has been transformational in how I’ve dealt with this disease. And please don’t think ‘It’s not for me’ (as I did for 6 months after diagnosis), go along and speak to them(no appointment needed, just walk in) and see what support groups they have. Also the Specialist nurses on this site are wonderful, they will make time for you and are so knowledgeable' so give them a ring.

I was T3BN0M0 so it had spread the the Seminal Vesicles…I didn’t even know what they were until I got this disease🀣🀣🀣. My PSA was 36 and Gleason 4+3. 2 years since treatment started my PSA is undetectable. So….there is plenty of hope for you that you will be cured. Try and stay positive avoiding Dr Google at all costs and use THIS site as your source of information.

I wish you all the best on you journey, there will be bumps along the road but don’t let this disease define you!

Derek

User
Posted 19 Jul 2024 at 08:37
Thanks, Gerard, Chris and Derek,

As stated the waiting is the worst. I'm the sort of guy that likes to know what a situation is, what the outcomes may be, and then have a plan for it. Not the case at the moment, but will be soon.

This site really is gonna be a rock for me, My family have been amazing so far but fortunately none have them have gone through this and at times I've felt so very alone in this. It helps a lot just knowing that unfortunately there are so many other people that are in the same position as me, but more importantly so many people who are years down the track that I can learn from and take advice from.

Dave

User
Posted 19 Jul 2024 at 09:32

Hi Dave,

Sorry to see that you've had to find us, but Im glad that you have. You'll get lots of support here, from others who've faced what you're now facing.

If it's any comfort to you, I was diagnosed Gleason 8(4+4), which was later upgraded to Gleason 9(4+5) , T3a, the cancer had just breached the prostate capsule.

I had robotic surgery and 17 months later my PSA is undetectable.

I'm worse than you for always wanting to plan things, a self confessed control freak, but I've learnt with this disease things are often beyond your control. You have to put your faith in clinicians and take and deal with things one step at a time.

As Chris said I'd have thought you'd been given a provisional cancer staging after your MRI a radiological staging. 

Best of luck mate.

User
Posted 21 Jul 2024 at 19:30
So bit of a minor update:

So found out my T score is T3 a/b - not sure yet as waiting for results of CT scan that I had today. Got appointment through for oncologist on 31st July so hopefully by then will know how bad the situation is.

To say this s*** just got real is an understatement lol

Dave

User
Posted 24 Jul 2024 at 13:58
So the CT scan has come back as clear so now on to the PET scan just to confirm no spread. Feeling a lot more positive for the future now and ready to discuss treatment options.

Dave

User
Posted 25 Jul 2024 at 07:15

Hi Dave,

that’s good the CT scan has come back clear and your getting a PET scan to make sure. Hopefully that will be clear as well giving you more choice of treatments.

Staying positive is so important during this journey(ordeal?), so if you’re feeling more positive now that’s good…. I know it’s not easy at times so just be kind to yourself. It does get easier when you know what’s ahead. 
all the best for the 31st and keep us posted!

Derek

User
Posted 25 Jul 2024 at 09:45
Dave

Yes, you are following the same journey as a lot of us have been down. After the scans then they will discuss what the best treatment plan will be - you will probably have a couple of choices so feel free to ask questions as we have people who have been through every combination.

The main thing to remember is that PCa is (a) slow growing and (b) very treatable/curable. The chances are very high that you will eventually die of something completely unrelated and not PCa.

The anticipation and worry is honestly 100X worse than the actual treatment as we can all attest.

Best of luck and keep asking questions

Steve

User
Posted 25 Jul 2024 at 10:36
Thanks Steve and Derek,

Feeling a lot more positive this week than I was last week, last week I really was thinking "the end is nigh" and a lot of self sympathy was kicking in. Reading a lot of the topics on here from guys who have really been through the mill has been a huge inspiration and almost made me feel a bit of wimp lol.

Have made the decision that this thing aint gonna drag me down, it might cause changes in life, it might never end and always be part of my life, but the one thing it will never do is take over my life.

Dave

User
Posted 25 Jul 2024 at 10:49

Originally Posted by: Online Community Member

Have made the decision that this thing aint gonna drag me down, it might cause changes in life, it might never end and always be part of my life, but the one thing it will never do is take over my life.

I try my hardest to think positively, but in my opinion, you'd have to be Superman to escape completely unscathed.

PCa to me, is like an unpleasant mother-in- law who visits too often, for too long and is very difficult to get rid of.πŸ˜‰

 

 

Edited by member 25 Jul 2024 at 12:49  | Reason: Typo

User
Posted 25 Jul 2024 at 11:23

Originally Posted by: Online Community Member

Have made the decision that this thing aint gonna drag me down, it might cause changes in life, it might never end and always be part of my life, but the one thing it will never do is take over my life.

 

Absolutely.  At my diagnosis over 5 years ago, I was quizzing my consultant with dozens of questions.  He gave me a piece of advice I've never forgotten:  "don't make your life all about the cancer."  He was absolutely right.

It will impact your life, but it doesn't have to stop you doing what you love to do.  Wishing you all the very best. 

User
Posted 25 Jul 2024 at 12:30

Originally Posted by: Online Community Member
Absolutely.  At my diagnosis over 5 years ago, I was quizzing my consultant with dozens of questions.  He gave me a piece of advice I've never forgotten:  "don't make your life all about the cancer."  He was absolutely right.

That has to be the best piece of advice ever given. Spot on!

User
Posted 01 Aug 2024 at 08:19
So minor update is that after appointment with Oncologist yesterday there is no update!!!!!!

Seems I've been the victim of an admin cock up and should not have been there until after the results of the PET scan are available (I did phone up and query this but was told to attend as there could be things to discuss).

Left me feeling a little bit down today with all the waiting (yes yes I know you guys have advised this is the worst bit lol).

Oh well, PET scan today and hopefully see the Oncologist in a couple of weeks.

The really daft thing is I feel I'm prepared (or at least come to terms with) for whatever treatment plan is advised (even if it is treatment for life), I just want to know and get on with things.

Dave

User
Posted 01 Aug 2024 at 08:50

Morning Dave.

Sorry to hear about the cock up. It's not good enough.

I'm due an 18 month post op follow up call from my CNS soon. I know for a fact she'll not have accessed my last 3 PSA checks. But at least I'll be able to tell her that the results were fine and I'm doing OK. She'll then be able to tick a box saying I've been done. 😁

User
Posted 01 Aug 2024 at 20:48

Adrian56,

Yes, 'box-ticking exercise' sounds familiar...

Best wishes,

JedSee.

User
Posted 14 Aug 2024 at 14:05

So, update time. Just got back from appointment with Onco where it was explained to me that about 5% of men have a condition where the PET scan does not show any signs of cancer, even the cancer that the biopsy has proven to be there, let alone any spread - Yup, I'm in that 5% so no clearer at this point as to if the little sod is confined to the prostate or not.

Looking to progress now on the assumption that there is no spread and plan treatment on that basis. Been offered the options of surgery or RT (with Brachy for good measure) + HT for 3 years.

Trouble is I really can't make up my mind on what option appeals the most (or should that be appeals the least?)

The "bish bash bosh" of surgery to get the dam thing out appeals but the risk of long term incontinence and ED puts me off. On the other hand having the treatment ongoing for 3 years and the risk of less severe but 3 years worth of side effects puts me off this option.

Daft as it seems, a part of me wishes there hadn't been options, just a simple case of cracking on with what's available.

Dave

User
Posted 14 Aug 2024 at 16:57

Hi Dave, 

Decisions, decisions, decisions eh. Not sure I can help you, it’s a case of doing your research, assessing the risks, impact of treatment and side effects and then going for it, I think. There are loads of threads on here discussing the dilemma faced when it comes to choosing treatment options. 

I’m on the ‘3 year HT & chemo & radio (incl brachy) path, just over a year into it. My path was set as my PCa is locally advanced, I just had one decision to make over whether to have brachy aswell or not. As I type this I’m dripping in sweat due to one of the million side effects of HT and must admit at the moment that the ‘bish bash’ option would have big appeal if it had been available to me.

Best of luck whichever path you choose, I feel for you it’s a difficult decision to make 😬🀞🀞

All the best

Spongebob

User
Posted 15 Aug 2024 at 10:57
There is no right or wrong answer and both treatment plans appear to have similar 'curative' outcomes.

It really depends on how the treatment fits in with your life - surgery is disruptive for 2-3 months but then is generally all done with unless a short term HT/RT follow up is needed.

Starting with HT/RT takes longer and depends a lot on how you react to the HT - for some this is minor but some people have issues significant discomforts from it.

For me, getting the Mothership out of me was important - hence my choices :)

Good luck!

User
Posted 15 Aug 2024 at 11:03

Originally Posted by: Online Community Member
There is no right or wrong answer and both treatment plans appear to have similar 'curative' outcomes.

It really depends on how the treatment fits in with your life - surgery is disruptive for 2-3 months but then is generally all done with unless a short term HT/RT follow up is needed.

Starting with HT/RT takes longer and depends a lot on how you react to the HT - for some this is minor but some people have issues significant discomforts from it.

For me, getting the Mothership out of me was important - hence my choices :)

Good luck!

Hi Spongebob and Steve, many thanks for the responses and view points. The bits in bold in the quote are the 2 aspects that I find myself leaning towards surgery.

I know there are no  guarantees with any of the treatment paths but at least with the surgery I'll know sooner rather than later if I need additional treatment.

Dave

User
Posted 15 Aug 2024 at 11:25
Hi Risca, I was diagnosed 2022 scans, biopsy etc was graded T2c elected surgery to get rid of the pesky thing however once the prostate was under the microscope in full I was upgraded to T3b with positive margins. Initially undetectable PSA however approx 6 months ago it started to rise. Referred to oncology and started 33 sessions of radiotherapy last week. I have no regrets about having the surgery. Unfortunately I was one of the ones who have had a biochemical recurrence. Good luck in what ever treatment you decide. It is a difficult decision with pros and cons.
User
Posted 05 Sep 2024 at 08:32
Ok so latest update. After what feels like an age and much mind changing I am now booked in for RARP on 1st October. Had all the pre-op assessments yesterday and all good to go.

Dave

User
Posted 05 Sep 2024 at 08:57

Good luck Dave 🀞

User
Posted 05 Sep 2024 at 12:15

Hi Dave, 

If you haven't already, I would recommend that you start doing pelvic floor exercises between now and your operation. 

Good luck. 

Kev.

User
Posted 05 Sep 2024 at 15:02

Originally Posted by: Online Community Member

Good luck Dave 🀞

Ditto from me, Dave.

User
Posted 06 Sep 2024 at 08:25

Originally Posted by: Online Community Member

Hi Dave, 

If you haven't already, I would recommend that you start doing pelvic floor exercises between now and your operation. 

Good luck. 

Kev.

Cheers Kev, been doing them a couple of weeks in readyness

Dave

User
Posted 06 Sep 2024 at 11:58

Hi Dave

I thoroughly recommend the "Squeeze Men" app for the iPhone/Android. Costs £2.99 and it really helps with remembering and performing the exercises. 

User
Posted 03 Oct 2024 at 00:53

Ok so had the RARP yesterday and feel like I’ve been kicked by a horse πŸ˜‚.

It seems already that I may have made the wrong decision as the surgeon has already advised me to be prepared for further treatment, bit gutted to be sat in here in so much discomfort knowing it looks like it may have been for nothing.

oh well, at least at this stage they are still talking curative for now at least.

Dave

User
Posted 03 Oct 2024 at 07:24

Hi  Dave,

I'm sorry to hear that you are in pain and that the surgeon feels that'll you'll need further treatment. We're you given a pre op cancer staging? Reading your previous posts it seems that you were either T3a or T3b?

Edited by member 03 Oct 2024 at 07:31  | Reason: Additional text

User
Posted 03 Oct 2024 at 07:43

Originally Posted by: Online Community Member

Hi  Dave,

I'm sorry to hear that you are in pain and that the surgeon feels that'll you'll need further treatment. Were you given a pre op cancer staging? Reading your previous posts it seems that you were either T3a or T3b?

Hi Adrian, they said T3 a/b (couldn’t tell any further than that due to PET scan not working as expected). Shouldn’t really be a surprise I guess thinking about it.

Dave

User
Posted 03 Oct 2024 at 10:07

Originally Posted by: Online Community Member

bit gutted to be sat in here in so much discomfort knowing it looks like it may have been for nothing. 

Risca ,there are some medics that see removal of the mother ship as being beneficial.

Take it easy but try to keep mobile, hopefully the pain will ease over the next few days.

Thanks Chris 

Edited by member 03 Oct 2024 at 10:08  | Reason: Not specified

User
Posted 06 Nov 2024 at 08:28

So time for a bit of an update.

Had post-op follow up with the surgeon yesterday. Started off with the bad news that the pathology report had upgraded me from Gleason 8 (4+4) to Gleason 9 (5+4) and confirmed that the cancer had breached the prostate capsule πŸ˜ͺ

He followed that up with confirming that the Lymph nodes and other tissues removed had all come back negative and he was pretty happy to state he had got it all so no further treatment at this time just a PSA test in 6 to 8 weeksπŸ˜€

To say I'm happy with the outcome is an understatement and even the incontinence now suddenly feels bearable and I must admit seems to be getting a little better (though the leather thongs won't be making an appearance any time soon.

Dave

User
Posted 06 Nov 2024 at 10:18

Hi Dave.

Thanks for the update mate.

Our post op histology results are remarkably similar, and twenty one months later, my PSA is still undetectable at <.0.02.

Best of luck with your further tests and continued recovery. 

User
Posted 06 Nov 2024 at 10:26

Hi Adrian,

Funnily enough you were the first person I thought of (outside the family) when I got the results. Couldn't believe how similar a path we have trod.

Dave

User
Posted 06 Nov 2024 at 17:55

Originally Posted by: Online Community Member

To say I'm happy with the outcome is an understatement .....

 

 

Great news Dave, - touching the odd horse shoe does work sometimes 😬.

All the best.

 

User
Posted 06 Nov 2024 at 20:16

Yes Dave that’s good news, you can now concentrate on your recovery but take it easy!

All the best,

Derek

 
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