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Diagnosed yesterday out the blue

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User
Posted 30 Nov 2019 at 12:08

Hi everyone, was hoping I'd never have the need to join such a community, but yesterday was given news that cancer had been detected in tissue following a TURP procedure, neither I, my wife or surgeon expected that so it hit everyone out the blue. I was hoping I'd be given the green light to just go away and get on with my life. Now it's like a cloud hanging over me, I feel numb is the best way to describe it. All we know at the moment is I have a gleeson score (think that's it) of 7. My surgeon has said it's early stage and it may well have all been removed during TURP (I have to be honest and say I doubt that) so I'm now in position of having to wait till January for a scan, blood tests and biopsy, they can't do it before as everything needs to settle down after TURP. So a good few weeks of this cloud and not knowing . I'm at a loss of what to do at this point. The more I read the more I think sh#t this is serious life changing or ending stuff...at 53...I'm reading about how cancer cells can drift off and form elsewhere, all scary stuff and I'm struggling to find any positives...I'm also reading about the hifu  procedure instead of the prostate being removed which is what my surgeon has suggested may need to happen pending test and scan results...Anything anyone has to say will be very much appreciated at this stage, I'm meant to be a strong man doing what I do, but I feel anything but that right now...cheers

Edited by member 30 Nov 2019 at 12:58  | Reason: Spelling mistake

User
Posted 30 Nov 2019 at 13:24

Steve, sorry you find yourself here.

To be honest, there's nothing to do until you get your scan results. There's a good chance it's been caught very early as they saw no sign before or during the TURP. You might be T1 stage.

I would suggest you try and forget about it until January, as far as you can.

User
Posted 30 Nov 2019 at 13:57

Hi Steve,

Andy's right, there's little you can do until the scan results.

I did the same as you, I read far too much on the subject (and it did me no good). I would suggest as you're in to fitness, to maybe use that as a coping strategy, to focus your mind. Going through this is already making you stronger, don't doubt yourself, you will find strength.

User
Posted 30 Nov 2019 at 14:22
The fact that it was picked up from the material removed during a TURP rather than biopsy makes it much easier to predict whether there is significant cancer present - if there was, they would have seen evidence at the edges of what was removed and would know that some has been left behind. It seems that your surgeon, having seen the pathology, is fairly confident that this is not the case.

Try not to overthink or start preempting what decisions you might or might not make; you could drive yourself round the twist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2019 at 17:15

Hi Steve

I know its hard when you get the first results but still have to wait to get all the answers, It sounds you have a Gleason 7 as you said but will need the MRI ,bone scans and ultra sounds to get a good idea of your options.

I was diagnosed in 2016 with Gleason 3+4=7 you can check my journey by clicking on my avatar.But overall i had Brachytherpy in September 2016 and three years on am doing well with PSA at 0.22 and yearly blood tests. I am a little older than you at 73 but very happy with the results so far.If i can be any help later on with questions just ask.

Good luck John.

User
Posted 30 Nov 2019 at 19:36
Steve,

Difficult though this may seem to believe in your current situation, prostate cancer is not going to "dominate your life for as long as you've got left". All the indications are that it's been caught at an early stage and may well indeed have already been removed. Knowing that you've got prostate cancer simply becomes "the new normal" and you get on with life, because that's just what you'd got to do.

We probably all have a twinge of anxiety waiting for the 6 monthly (or whatever it may be) PSA test result, but other than that I can honestly say that these days (I was diagnosed in May 2018) I never think about cancer from one week to the next. I'm happier now that I've been for years because my cancer's been treated and all the trivial stuff I used to worry about seems so unimportant now in comparison.

Yes, a cancer diagnosis is life changing, but strange though it may seem to say, the change can be for the better. It certainly has been in my case.

Very best wishes,

Chris

User
Posted 02 Dec 2019 at 06:55
Waiting for all the test results is the hardest part of the whole experience for many, Steve. Unfortunately there's no shortcut - just take things a day at a time and try not to dwell on it (easier said than done, I know).

Best wishes,

Chris

User
Posted 02 Dec 2019 at 15:54
Steve,

I have tried to reply to your question about MRI after Turp but the boxes that enable this are missing so I cannot do so and when trying to bring this to attention just get 'access denied' In any event would be a good idea to post all questions you have about yourself under a common thread rather than start new ones.

Barry
User
Posted 02 Dec 2019 at 18:50

Hi Steve,

I have read this thread with interest and I do not normally respond as there are so many better qualified responders on this site that I invariably just enjoy reading the daily updates, perhaps like many others.

I had a shock diagnosis on Jan 2nd this year 2019.  Gleason 7 (4-3).

Cutting a long story short, I have had a RARP and as of this morning my PSA is undetactable.  I had the prostectomy in April, an open inguinal hernia operation 6 weeks ago and have a salienoscopy tomorrow morning at Oxford.

On top of this, I have resigned from my General Management position and set up my own business and am very, very busy and earning very well.

just an endorsement of what someone else has stated.  Pca has changed my life.....but to be honest......for the better.

Please look at this next stage of your life as exactly that.....you next stage.  Enjoy, embrace, change for the better and do something that you will be proud of.

 

Good fortunes on your journey

 

kind regards

 

Steven

 

 

 

 

 

User
Posted 02 Dec 2019 at 19:08

Originally Posted by: Online Community Member
Steve,

I have tried to reply to your question about MRI after Turp but the boxes that enable this are missing so I cannot do so and when trying to bring this to attention just get 'access denied' In any event would be a good idea to post all questions you have about yourself under a common thread rather than start new ones.

Stevej99 posted that question in the 'ask the nurses' section which has now been closed back down. 

Steve, you should trust your specialist rather than well meaning advice from random people or websites. If he says you should have MRI in January, then that is what he has assessed is the correct pathway for you. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Dec 2019 at 21:55

Steve,

Well what Lyn has said explains why you didn't get any replies to your TURPS question.

You may find the latter part of this NHS guide helpful regarding recovery. https://www.nhs.uk/conditions/transurethral-resection-of-the-prostate-turp/recovery/

As regards having an MRI subsequent to a TURPS or biopsy, this has to be delayed until the Prostate has healed and a good image can be obtained and in view of what you had done your consultant will want this done when s/he feels this is appropriate, (late January would not surprise me).
How soon you can reach previous activerty levels after a procedure will depend on a number of factors, largely on how fit and young you are and what you had done. Should you go on to have a prostatectomy even a robotic one, you will have to take it very easy for a period, only lifting very light things for a time. Again you should receive advice on this from your hospital. Men who have RT rather than surgery usually have HT at the same time and the combined effects tend to make you tired and muscles ache so that you don't feel able to cycle so far or do whatever exercise to the extent you normally would. As long as men are on HT there will be some side effects, differeing in type and intensity from one individual to another but the body can become used to HT after a time and the effects become less. With surgery, after a few months a fit may can reach his his former level of fitness although this may be affected by incontenance for example.

The stages can't be rushed and you don't want to risk setting yourself back by trying to do too much too soon.

Let us know when you get your full diagnosis and what treatment you are offered.

Edited by member 02 Dec 2019 at 21:56  | Reason: Not specified

Barry
User
Posted 07 Dec 2019 at 09:48

Hi everyone, I have finally got a copy my of  consultants letter through, and lots of medical words which I'm starting to get my head around. The key points though are this I think...incidental Gleason 3+4-7 prostate cancer in 5 out of the 60 chips, less than 5%, stage T1a...

So that's what we know at the moment. The next stage is having to wait untill new year for everything to settle following the TURP, then we can do scans etc...I've been told the best biopsy available is something called a fusion biopsy, so looking into that presently...anyway that's me done, thought I'd give an update. Looking forward to watching the boxing tonight and having some normality back in my life after this past week...👍 Stay strong everyone and thanks again👊

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User
Posted 30 Nov 2019 at 13:24

Steve, sorry you find yourself here.

To be honest, there's nothing to do until you get your scan results. There's a good chance it's been caught very early as they saw no sign before or during the TURP. You might be T1 stage.

I would suggest you try and forget about it until January, as far as you can.

User
Posted 30 Nov 2019 at 13:57

Hi Steve,

Andy's right, there's little you can do until the scan results.

I did the same as you, I read far too much on the subject (and it did me no good). I would suggest as you're in to fitness, to maybe use that as a coping strategy, to focus your mind. Going through this is already making you stronger, don't doubt yourself, you will find strength.

User
Posted 30 Nov 2019 at 14:14

Thank you Kev and Andy, Its incredibly hard not to read stuff and it just seems right now whatever happens, it's going to be a long bumpy ride, and this is going to just dominate my life for however long I've got left. I'm in the shock and disbelief stage at the moment, the uncertainty is a killer, what I do know is it's gonna be a hard road ahead. I am a fighter (literally, I teach this stuff, I'm vastly into the mental strength side of things as well as the physical, and to lose all that scares me as it has defined who I am) but mostly it's the effect this is going to have on my wife and girls. When you've always been the one who they rely on, and you fix things that go wrong, you have their backs etc...just upsetting....I'm hoping all these emotions will settle down in coming days/weeks. Do people have the prostate removed and just get on with their lives almost as normal once it's all healed. I get the stuff about erections etc, and it sounds as though that's unavoidable, incontinence worries me I must admit..sorry to go on guys, as you can imagine it's a bit of a rollercoaster at moment.

User
Posted 30 Nov 2019 at 14:22
The fact that it was picked up from the material removed during a TURP rather than biopsy makes it much easier to predict whether there is significant cancer present - if there was, they would have seen evidence at the edges of what was removed and would know that some has been left behind. It seems that your surgeon, having seen the pathology, is fairly confident that this is not the case.

Try not to overthink or start preempting what decisions you might or might not make; you could drive yourself round the twist.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Nov 2019 at 17:15

Hi Steve

I know its hard when you get the first results but still have to wait to get all the answers, It sounds you have a Gleason 7 as you said but will need the MRI ,bone scans and ultra sounds to get a good idea of your options.

I was diagnosed in 2016 with Gleason 3+4=7 you can check my journey by clicking on my avatar.But overall i had Brachytherpy in September 2016 and three years on am doing well with PSA at 0.22 and yearly blood tests. I am a little older than you at 73 but very happy with the results so far.If i can be any help later on with questions just ask.

Good luck John.

User
Posted 30 Nov 2019 at 19:36
Steve,

Difficult though this may seem to believe in your current situation, prostate cancer is not going to "dominate your life for as long as you've got left". All the indications are that it's been caught at an early stage and may well indeed have already been removed. Knowing that you've got prostate cancer simply becomes "the new normal" and you get on with life, because that's just what you'd got to do.

We probably all have a twinge of anxiety waiting for the 6 monthly (or whatever it may be) PSA test result, but other than that I can honestly say that these days (I was diagnosed in May 2018) I never think about cancer from one week to the next. I'm happier now that I've been for years because my cancer's been treated and all the trivial stuff I used to worry about seems so unimportant now in comparison.

Yes, a cancer diagnosis is life changing, but strange though it may seem to say, the change can be for the better. It certainly has been in my case.

Very best wishes,

Chris

User
Posted 30 Nov 2019 at 20:15

Thank you so much for your reply John, it is much appreciated that you took time to reply. All these replies help believe me. Thank you again and I will keep you all updated of my progress. 

User
Posted 30 Nov 2019 at 20:21

Thanks for your words Chris, I appreciate others words of encouragement and their story.  These next few weeks are kind of a limbo for me, I'm trying to be positive looking at treatment possibilities, just doing my homework I guess, I'm thinking informed is the best.

User
Posted 01 Dec 2019 at 16:50

Thank you everyone for your kind words, advice and support. It is very much appreciated as I try come to terms with this bombshell news. Yesterday was tough, a bit of an emotional roller coaster, but I'm trying to be a bit more positive today, done what I guess everyone does when being given the news, researched like a madman on the internet. I'm quite liking what I'm hearing about HIFU but guess I need all the tests done in January before I know if that is a possibility, so untill then I've got my fingers crossed everything will be good come the results and hifu is a possibility...thanks again everyone.

User
Posted 02 Dec 2019 at 06:55
Waiting for all the test results is the hardest part of the whole experience for many, Steve. Unfortunately there's no shortcut - just take things a day at a time and try not to dwell on it (easier said than done, I know).

Best wishes,

Chris

User
Posted 02 Dec 2019 at 14:03

Thanks Chris, I'm guessing right now I will have good days and bad days until this is all done with and I know what I'm up against.

User
Posted 02 Dec 2019 at 15:54
Steve,

I have tried to reply to your question about MRI after Turp but the boxes that enable this are missing so I cannot do so and when trying to bring this to attention just get 'access denied' In any event would be a good idea to post all questions you have about yourself under a common thread rather than start new ones.

Barry
User
Posted 02 Dec 2019 at 16:22

Thanks Barry, could you answer in this thread if you know? Many thanks.. Steve

User
Posted 02 Dec 2019 at 18:50

Hi Steve,

I have read this thread with interest and I do not normally respond as there are so many better qualified responders on this site that I invariably just enjoy reading the daily updates, perhaps like many others.

I had a shock diagnosis on Jan 2nd this year 2019.  Gleason 7 (4-3).

Cutting a long story short, I have had a RARP and as of this morning my PSA is undetactable.  I had the prostectomy in April, an open inguinal hernia operation 6 weeks ago and have a salienoscopy tomorrow morning at Oxford.

On top of this, I have resigned from my General Management position and set up my own business and am very, very busy and earning very well.

just an endorsement of what someone else has stated.  Pca has changed my life.....but to be honest......for the better.

Please look at this next stage of your life as exactly that.....you next stage.  Enjoy, embrace, change for the better and do something that you will be proud of.

 

Good fortunes on your journey

 

kind regards

 

Steven

 

 

 

 

 

User
Posted 02 Dec 2019 at 18:59
Great post, Steve - was the hernia caused by the RARP? It is a common side effect not often discussed by medics with their patients.

Good luck with the new venture.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Dec 2019 at 19:08

Originally Posted by: Online Community Member
Steve,

I have tried to reply to your question about MRI after Turp but the boxes that enable this are missing so I cannot do so and when trying to bring this to attention just get 'access denied' In any event would be a good idea to post all questions you have about yourself under a common thread rather than start new ones.

Stevej99 posted that question in the 'ask the nurses' section which has now been closed back down. 

Steve, you should trust your specialist rather than well meaning advice from random people or websites. If he says you should have MRI in January, then that is what he has assessed is the correct pathway for you. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Dec 2019 at 19:19

Thanks for that Steven, great to hear your positivity and things seem to be going good for you. I hope that everything continues to go well and normality returns. That's what I'm already beginning to look on with envy now, the mundaneness of normality, of not having to worry about cancer. As I've said before I'm in limbo until all the tests are done in the new year, only then do I know where I am and what my options are. Thanks again everyone, your advice and words give me hope👍 Can I just ask everyone another question, and this is regarding training. I'm very much into fitness, weight training, biking, boxing etc. Is there anyone else on here similar and if so how has this affected your training? Are you back to training as hard as you did prior to treatment.? Thanks again everyone...Steve 

User
Posted 02 Dec 2019 at 21:55

Steve,

Well what Lyn has said explains why you didn't get any replies to your TURPS question.

You may find the latter part of this NHS guide helpful regarding recovery. https://www.nhs.uk/conditions/transurethral-resection-of-the-prostate-turp/recovery/

As regards having an MRI subsequent to a TURPS or biopsy, this has to be delayed until the Prostate has healed and a good image can be obtained and in view of what you had done your consultant will want this done when s/he feels this is appropriate, (late January would not surprise me).
How soon you can reach previous activerty levels after a procedure will depend on a number of factors, largely on how fit and young you are and what you had done. Should you go on to have a prostatectomy even a robotic one, you will have to take it very easy for a period, only lifting very light things for a time. Again you should receive advice on this from your hospital. Men who have RT rather than surgery usually have HT at the same time and the combined effects tend to make you tired and muscles ache so that you don't feel able to cycle so far or do whatever exercise to the extent you normally would. As long as men are on HT there will be some side effects, differeing in type and intensity from one individual to another but the body can become used to HT after a time and the effects become less. With surgery, after a few months a fit may can reach his his former level of fitness although this may be affected by incontenance for example.

The stages can't be rushed and you don't want to risk setting yourself back by trying to do too much too soon.

Let us know when you get your full diagnosis and what treatment you are offered.

Edited by member 02 Dec 2019 at 21:56  | Reason: Not specified

Barry
User
Posted 02 Dec 2019 at 22:46

Thank you Barry for all the info. The possible side effects are the reason I am looking so much into HIFU at the moment if this is a possibility for me. 

 

 

User
Posted 07 Dec 2019 at 09:48

Hi everyone, I have finally got a copy my of  consultants letter through, and lots of medical words which I'm starting to get my head around. The key points though are this I think...incidental Gleason 3+4-7 prostate cancer in 5 out of the 60 chips, less than 5%, stage T1a...

So that's what we know at the moment. The next stage is having to wait untill new year for everything to settle following the TURP, then we can do scans etc...I've been told the best biopsy available is something called a fusion biopsy, so looking into that presently...anyway that's me done, thought I'd give an update. Looking forward to watching the boxing tonight and having some normality back in my life after this past week...👍 Stay strong everyone and thanks again👊

 
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