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First time on - massive denial

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User
Posted 28 Jan 2018 at 10:20

Morning everyone
My first time on the forums and it’s probably something I should have done a lot sooner but as you can see from the title I’m in denial about it all,and not dealing well with my circumstances at all.
My story in brief is - I went to the GPs in late September with urinary problems, thinking it was just my age (55). To cut a long story short PSA was 6.7 and initial biopsy gave me a Gleason score of 3+3, managing and monitoring was the plan. But after an MRI the score was pushed up to 3+4. In mid December I had the discussion with my consultant around Surgery vs Radiotherapy, Nicola my Macmillan Nurse at Sunderland also gave advice/info.
I attended a workshop ran by Nicola and her colleague in very late December where myself and 3 others were given more info around the robotic surgery, the side effects (both long & short term), recovery time,nerve sparing etc
This made my mind up for me,although I was already 95% of the way there, surgery it is.
But with one week to go, surgery is booked for Monday 5 February,per-op 31 Jan,abject panic is setting in. Bottom line is I don’t feel ready physically and particularly mentally.
Reading the forums I’m ill prepared in that I don’t have the info others have, my fault because I don’t ask. I read that you need to go into the surgery fit and healthy, well I’m healthy but I’m anything but fit. But more worryingly I’m fixated mentally with the side effects to the point that they are more important than the cancer. I know that is wrong but I’m really struggling,this surgery is principally about ridding my body of this disease something [name removed by Moderator],my consultant, and Nicola have made clear. They want to cure me but all I can think about is the side effects and my future eg dealing with ED & bladder issues.
I’m blanking off Lesley my wife, either not talking about it or changing the subject.
I know I’m being irrational and in some ways ungrateful, I have the opportunity of a possible cure but my mindset is such that I can’t even compute that.
I’m not sure anyone on the forums can even empathise with me or has been where I am but with a week to go I’m really struggling to accept all of this.
Sorry for the downbeat nature of this post when so many on here are strong and inspiring but I suppose we are all individual and deal with things our own way. I hope to get some strength,positiveness and even ideas for the way forward from people on here who have had to deal with much worse than me.
And on that note good luck to everyone who is going through this in whatever manner, sufferer,partner,family member.
Cheers
Derek

Edited by moderator 28 Jan 2018 at 12:30  | Reason: Not specified

User
Posted 28 Jan 2018 at 19:56
D

I do not reply very often to newbies asking for advice, my journey has been trying to say the least and I would not like to put anyone off having treatment. Like others on here your story also struck a chord with me.

I went to all my pre diagnosis and pre op scans and appointments alone, it was my problem, my body and my decision. Not proud of it but I sent my wife a text to say I had been diagnosed with cancer. I did not want to discuss the problem with her but was quite happy to talk to work colleagues and strangers with prostate cancer. Speak to the specialist nurse on this site , the number is at the top of the page , they may be able to put you in touch with a "buddy" who has gone through the same journey. In hindsight not involving the wife was the wrong approach and I would have struggled post op to care for myself. So get you wife involved.

I had four months to make my decision to have treatment or not, but the final decision was made whilst sat on the anesthetic room table 10 minutes before the op. A few weeks later I wondered why I had even considered not having treatment. Like you my main worries were ED and continence followed by cancer. My surgeons main concerns were the reverse of my thinking.

The ED can be overcome with various options and it can be tremendous fun trying to solve the problem. Incontinence can be depressing but surgical techniques have improved and incontinence is not guaranteed. I was initially almost dry 4 days post Catheter removal.

I wasn't mentally ready for the op, why do I want to put my body through an op that will change my life, I am not ill ? Imagine a few years in the future without any treatment and facing a potentially painful death and wishing you had chosen to have treatment. I was not particularly fit, I had lost over a stone but you cannot do a great deal between now and the proposed op date.

My op etc was quite straightforward, I did have a problem with constipation that landed me in the emergency department. I was back at work four weeks after the op and back to my new normal after about six weeks. I have had some additional problems but they are not common, would I do the same again, one hundred percent yes. You have got the opportunity to extend your life, why turn it down.

All the best for the future.

Thanks Chris

User
Posted 29 Jan 2018 at 10:34

Hi Derek

I read your post and can absolutely understand where you are coming from. I went for Radio Therapy accompanied by 6 months Hormone Therapy but I got very twitchy reading some posts about the after effects of RT. Notably the possibility of rectal incontinence. It wasn't helped by the fact that a friend had had RT and the treatment had damaged his bowel and he ended up in hospital for 2 weeks. I had visions, quite literally, of soiling myself.

But then I made a link, an unlikely link I admit, to various on-line forums for cars. You might be thinking of a particular model and you look at on-line forums and you read a catalogue of disasters even for models that have an excellent record for reliability. The reason for this, of course, is that people tend to go on forums seeking advice or to complain about problems. You almost never get anybody saying "Do you know what, I've had this car for 2 years and absolutely nothing has gone wrong."

Which is a roundabout way of saying that the worst case scenario is exactly that - a worst case - and by no means typical. That's not in any way to belittle anybody's fears or to suggest there are not things to consider carefully but the key thing to have in mind is defeating this disease. I wish you all the best and I've been there and know how you feel.

Pete

User
Posted 28 Jan 2018 at 10:20

Morning everyone
My first time on the forums and it’s probably something I should have done a lot sooner but as you can see from the title I’m in denial about it all,and not dealing well with my circumstances at all.
My story in brief is - I went to the GPs in late September with urinary problems, thinking it was just my age (55). To cut a long story short PSA was 6.7 and initial biopsy gave me a Gleason score of 3+3, managing and monitoring was the plan. But after an MRI the score was pushed up to 3+4. In mid December I had the discussion with my consultant around Surgery vs Radiotherapy, Nicola my Macmillan Nurse at Sunderland also gave advice/info.
I attended a workshop ran by Nicola and her colleague in very late December where myself and 3 others were given more info around the robotic surgery, the side effects (both long & short term), recovery time,nerve sparing etc
This made my mind up for me,although I was already 95% of the way there, surgery it is.
But with one week to go, surgery is booked for Monday 5 February,per-op 31 Jan,abject panic is setting in. Bottom line is I don’t feel ready physically and particularly mentally.
Reading the forums I’m ill prepared in that I don’t have the info others have, my fault because I don’t ask. I read that you need to go into the surgery fit and healthy, well I’m healthy but I’m anything but fit. But more worryingly I’m fixated mentally with the side effects to the point that they are more important than the cancer. I know that is wrong but I’m really struggling,this surgery is principally about ridding my body of this disease something [name removed by Moderator],my consultant, and Nicola have made clear. They want to cure me but all I can think about is the side effects and my future eg dealing with ED & bladder issues.
I’m blanking off Lesley my wife, either not talking about it or changing the subject.
I know I’m being irrational and in some ways ungrateful, I have the opportunity of a possible cure but my mindset is such that I can’t even compute that.
I’m not sure anyone on the forums can even empathise with me or has been where I am but with a week to go I’m really struggling to accept all of this.
Sorry for the downbeat nature of this post when so many on here are strong and inspiring but I suppose we are all individual and deal with things our own way. I hope to get some strength,positiveness and even ideas for the way forward from people on here who have had to deal with much worse than me.
And on that note good luck to everyone who is going through this in whatever manner, sufferer,partner,family member.
Cheers
Derek

Edited by moderator 28 Jan 2018 at 12:30  | Reason: Not specified

User
Posted 28 Jan 2018 at 14:36

Sorry, cut myself off in my prime. To continue, if you are in fact Gleason 6 and you had a low PSA and the MRI scan showed the cancer to be confined to the prostate capsule, then you have been offered two curative options. Not a lot of us on here have had that luck. Yes, you are lucky. Now make the most of it, embrace those who care about you and work at making that cure full and a great success so that you can look back on your fears with a smile, rather than in terror. The best way of helping yourself is to get fit, stay fit with gentle exercise and give your body a bit of help on the way with a balanced non-faddy diet which, by bring good for your heart, aids your recovery and subsequent good health.

Good Luck

AC

User
Posted 28 Jan 2018 at 14:47

Hi Derek

I was diagnosed last April after having no specific symptoms of any prostrate trouble. I just kept getting an occasional pain when I passed urine. I went to the doctor who sent me for blood tests and they came back with a raised PSA of 4.3

Following this I had a biopsy and then went in the body scanner and discovered I had the early stages of PC on both sides of the prostrate Gleason 4 and 3.

After discussions with the Surgeon and Radiotherapist and being only 55 years of age I was recommended for robotic surgery. You can have surgery and if that's not successful you can follow with radiotherapy, but if you have radiotherapy first you cannot have surgery after.

I think quite a few people like yourself blank things from the memory until its almost time for the treatment/surgery. You will be ready for it so don't worry.

The surgery was ok no real bad pain, after an overnight stay I was sent home with a blood drain, catheter in place and blood thinning injections and pain killers.

I had to keep measuring the amount of blood coming from the drain (sounds worse than it was) and then when it had slowed down I went back to the hospital for the drain to be removed.

Don't worry about the thought of injecting yourself its very easy and doesn't hurt. The nurses at your hospital will always be on hand to answer any questions you may have. I often phoned for advise and always got a quick response.

I had a complication as I had a leak in my bladder and needed 4 cystogram's so the catheter stayed in for 9 weeks, It was a bit uncomfortable but the majority of cases the catheter usually only stays in for 10 days max.

I was dry after 3 weeks - doing the exercises regularly I think certainly helped me.

I'm so glad I made the decision to have the operation and be rid of this terrible disease, a couple of weeks ago I got the good news, my PSA is less than 0.01 for the third time.

Hope my experiences help you and put your mind at ease. Honestly its not as bad as you may think.

Good luck and hope all goes well - I'm sure it will.

 

User
Posted 29 Jan 2018 at 15:28

Hi Derek, I am new to the site as well ,but can relate to your problem. I have Gleason 6 in both right and left sides , PSA ranging from 5.4 a year ago, down to 2.92 then back up to 3.5, and I go for my  latest set of blood tests next week to get an update. I am on active surveillance and have had 2 MRI scans and 2 sets of biopsies about a year apart. Last report was much easier to understand and feel I am now almost an expert on the terminology etc. !!  5 positive cores out of 14....Maximum % core involvement 10%,maximum cancer length 1mm, the other 4 cancer lengths 0.5mm, so overall Adenocarcinoma, present in 5 biopsy cores, Gleason 6 ,grade group1, so I am told "not to worry" and stay as fit as you can. I have read that biopsies can be hit or miss ,so what if other areas of my prostate have been missed and there is a greater % involvement. Its difficult not thinking about the worst scenario, however my wife has been brilliant and is in the medical profession herself and has kept me "grounded" as it were, so involving a partner is very important as you head through this worrying time. 

Good luck to you and all out there going through the same thing. 

 Keithyboy

 

I have not been offered any treatment as yet , I suppose next week might determine that.But I can sympathise with anyone who is wondering what the best option is when you have a localised 

Edited by moderator 11 Mar 2019 at 22:38  | Reason: Spacing issues

User
Posted 28 Jan 2018 at 14:17

Hello Derek and welcome to the site

If you are really uncertain about going ahead then perhaps you should ask for the op to be put off for now.

There is so much to take in and with no fore knowledge of outcomes it is always going to be hard to make a choice. You may (let's hope you do) sail through the whole thing and come out the other side wondering why you found it all so hard.
That, of course, will be with the benefit of hindsight, which if we all had that we'd never make a mistake and we'd all be rich!!

Firstly, as a wife myself, can I please say that it really isn't fair to "blank" your wife (imo)

What can we wives do to support our husbands if they won't let us in!! Not only does it mean we can't help and support our other halves but it leaves us in limbo. If we don't ask (because we keep getting blanked) then is may come across that we no longer care, which will be far from the case.

IF you go ahead with the op, then it will be your wife that is there to help you, make you tea, make sure you've got clean pyjamas and underpants!!
All without the benefit of knowing how you feel.
What are you afraid of in discussing it with her. That the dam will break and all your fears will come pouring out? Do you think she isn't silently going through the pros and cons as well?

For better, for worse, were the words used at our service. Over the years we have had to deal with some pretty horrible things (child and grandchild cancers to name just a couple) and without the support of each other we may not have been able to cope.

Please don't shut her out, well, not unless she has asked you to that is.

Your fears are natural. You have a decision to make which has the potential to change your life forever. It also has the potential to save your life and give you all the years with your wife and family that you planned on all those years ago.

I hope others come along to advise. I know that there have been a couple who changed their minds at the last minute about their treatment. Please never apologise for downbeat posts. You feel the need to offload, it's what we're here for.

The listening ear, the supportive shoulder. just remember, you have all that closer to home, and from one who will be affected almost as much as you by the decision you make.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Jan 2018 at 16:49
Hi Derek

I agree with what everybody has said especially Sandra. Whatever you do don't keep this to yourself and suffer in silence. You must involve your wife. She will help you in ways you can never imagine. They always say troubles shared are troubles halved.

I have tried my best to support my husband through this and whatever the future holds. I cannot imagine how I myself would cope if he froze me out.

Although there is perhaps no rush to start your treatment whatever you decide do bear in mind there is always a possibility of your final histology ( if you opt for surgery) being upgraded as the biopsy/ MRI can't show the whole picture. I myself would have been unhappy for my husband to do Active Surveillance as he had an element of Gleason 4 albeit a small amount. If you are a definite 3+3 it's a possibility but it's very difficult for even the professionals to be certain of it.

Best wishes whatever you decide

Ann

User
Posted 28 Jan 2018 at 17:05

Hi Derek,

I read your post and understand absolutely where you are coming from.  When you receive a cancer diagnosis your mind goes into overdrive and all rational thinking goes straight out of the window.  I can imagine your brain is doing 'thought gymnastics' struggling with the diagnosis and possible treatment side effects.  We always knew that my husband was at high risk of developing pca due to family history and he has been monitored for 15 years.  Last August (as I was completing radiotherapy for breast cancer) he was diagnosed with Gleason 8 in one side of his prostrate.  We were fortunate to be offered HT and radiotherapy or surgery.  I say fortunate, because like you, we have the chance of a cure.  Yes potential side effects can be devastating, but there is help out there.  Both the oncologist and surgeon felt that because of the high risk disease surgery would be the best option.

My husband had three months of hormone treatment to shrink his very large prostrate before surgery, which he underwent on Friday.  We have both been amazed at how well he is recovering.  He went down for surgery at 8am and was back on the ward at 3.30.  A bit of discomfort, but no real pain (lots of wind!).  We were home yesterday by 3.30.  He is up, walking and doing brilliantly well, just very tired.  As for the side effects, well we will deal with those when and if they come.  Having been on both sides of the fence so to speak, I can understand your thoughts, but I can also sympathise with your wife.  Please do try and talk, she will be worried and frightened too but you can get through this together, but you must try and talk. 

As for the forthcoming op, talk to your nurse or call one of the nurses on this site.  Get yourself down to a local Maggies or cancer support centre.  It took me 5 months following my own diagnosis to get help, but believe me, with support, counselling and possibly even medication you can get through this.  You have to you have no choice and can't do it alone.  You will find a new normal, I promise.  I say that both as a cancer 'survivor' and as the wife of a pc sufferer.

Sorry if I have rambled but your post struck a chord with me.

 

User
Posted 28 Jan 2018 at 17:43

Hi there,

Your post also struck a cord with me.. husband born 1963 G6 diagnosis and recommendation for surgery.

We ran very quickly from the surgery option as the quality of life issues made it a very serious decision- once it's gone, its gone.

I really feel for you as this time last year we had the same decision. Surgery was bottom of our list based on everything we read about low risk diagnosis.

You should take time to make sure all options are completely researched Derek.

Good luck

Clare

Show Most Thanked Posts
User
Posted 28 Jan 2018 at 14:17

Hello Derek and welcome to the site

If you are really uncertain about going ahead then perhaps you should ask for the op to be put off for now.

There is so much to take in and with no fore knowledge of outcomes it is always going to be hard to make a choice. You may (let's hope you do) sail through the whole thing and come out the other side wondering why you found it all so hard.
That, of course, will be with the benefit of hindsight, which if we all had that we'd never make a mistake and we'd all be rich!!

Firstly, as a wife myself, can I please say that it really isn't fair to "blank" your wife (imo)

What can we wives do to support our husbands if they won't let us in!! Not only does it mean we can't help and support our other halves but it leaves us in limbo. If we don't ask (because we keep getting blanked) then is may come across that we no longer care, which will be far from the case.

IF you go ahead with the op, then it will be your wife that is there to help you, make you tea, make sure you've got clean pyjamas and underpants!!
All without the benefit of knowing how you feel.
What are you afraid of in discussing it with her. That the dam will break and all your fears will come pouring out? Do you think she isn't silently going through the pros and cons as well?

For better, for worse, were the words used at our service. Over the years we have had to deal with some pretty horrible things (child and grandchild cancers to name just a couple) and without the support of each other we may not have been able to cope.

Please don't shut her out, well, not unless she has asked you to that is.

Your fears are natural. You have a decision to make which has the potential to change your life forever. It also has the potential to save your life and give you all the years with your wife and family that you planned on all those years ago.

I hope others come along to advise. I know that there have been a couple who changed their minds at the last minute about their treatment. Please never apologise for downbeat posts. You feel the need to offload, it's what we're here for.

The listening ear, the supportive shoulder. just remember, you have all that closer to home, and from one who will be affected almost as much as you by the decision you make.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Jan 2018 at 14:28

Derek, something not quite right here. An MRI scan will show where the cancer is. Only a biopsy can show whether it is Gleason 3+3 or 3+4, where it was sampled. I doubt if you had a second biopsy, so I assume you may have become confused by the numbers thrown at you and your fears about the situation.

User
Posted 28 Jan 2018 at 14:36

Sorry, cut myself off in my prime. To continue, if you are in fact Gleason 6 and you had a low PSA and the MRI scan showed the cancer to be confined to the prostate capsule, then you have been offered two curative options. Not a lot of us on here have had that luck. Yes, you are lucky. Now make the most of it, embrace those who care about you and work at making that cure full and a great success so that you can look back on your fears with a smile, rather than in terror. The best way of helping yourself is to get fit, stay fit with gentle exercise and give your body a bit of help on the way with a balanced non-faddy diet which, by bring good for your heart, aids your recovery and subsequent good health.

Good Luck

AC

User
Posted 28 Jan 2018 at 14:47

Hi Derek

I was diagnosed last April after having no specific symptoms of any prostrate trouble. I just kept getting an occasional pain when I passed urine. I went to the doctor who sent me for blood tests and they came back with a raised PSA of 4.3

Following this I had a biopsy and then went in the body scanner and discovered I had the early stages of PC on both sides of the prostrate Gleason 4 and 3.

After discussions with the Surgeon and Radiotherapist and being only 55 years of age I was recommended for robotic surgery. You can have surgery and if that's not successful you can follow with radiotherapy, but if you have radiotherapy first you cannot have surgery after.

I think quite a few people like yourself blank things from the memory until its almost time for the treatment/surgery. You will be ready for it so don't worry.

The surgery was ok no real bad pain, after an overnight stay I was sent home with a blood drain, catheter in place and blood thinning injections and pain killers.

I had to keep measuring the amount of blood coming from the drain (sounds worse than it was) and then when it had slowed down I went back to the hospital for the drain to be removed.

Don't worry about the thought of injecting yourself its very easy and doesn't hurt. The nurses at your hospital will always be on hand to answer any questions you may have. I often phoned for advise and always got a quick response.

I had a complication as I had a leak in my bladder and needed 4 cystogram's so the catheter stayed in for 9 weeks, It was a bit uncomfortable but the majority of cases the catheter usually only stays in for 10 days max.

I was dry after 3 weeks - doing the exercises regularly I think certainly helped me.

I'm so glad I made the decision to have the operation and be rid of this terrible disease, a couple of weeks ago I got the good news, my PSA is less than 0.01 for the third time.

Hope my experiences help you and put your mind at ease. Honestly its not as bad as you may think.

Good luck and hope all goes well - I'm sure it will.

 

User
Posted 28 Jan 2018 at 15:32

Rich, you have posted a couple of times recently that you were dry after 3 weeks - this is a bit confusing so can you clarify whether you mean that you were dry 12 weeks post op / 3 weeks after the catheter was removed?


Also, it is great that you are so positive but it is worth noting that not everyone has the support that you seem to have had. The idea that there will always be nurses on hand to answer questions etc is laughable to most of us :-(

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

User
Posted 28 Jan 2018 at 16:49
Hi Derek

I agree with what everybody has said especially Sandra. Whatever you do don't keep this to yourself and suffer in silence. You must involve your wife. She will help you in ways you can never imagine. They always say troubles shared are troubles halved.

I have tried my best to support my husband through this and whatever the future holds. I cannot imagine how I myself would cope if he froze me out.

Although there is perhaps no rush to start your treatment whatever you decide do bear in mind there is always a possibility of your final histology ( if you opt for surgery) being upgraded as the biopsy/ MRI can't show the whole picture. I myself would have been unhappy for my husband to do Active Surveillance as he had an element of Gleason 4 albeit a small amount. If you are a definite 3+3 it's a possibility but it's very difficult for even the professionals to be certain of it.

Best wishes whatever you decide

Ann

User
Posted 28 Jan 2018 at 17:05

Hi Derek,

I read your post and understand absolutely where you are coming from.  When you receive a cancer diagnosis your mind goes into overdrive and all rational thinking goes straight out of the window.  I can imagine your brain is doing 'thought gymnastics' struggling with the diagnosis and possible treatment side effects.  We always knew that my husband was at high risk of developing pca due to family history and he has been monitored for 15 years.  Last August (as I was completing radiotherapy for breast cancer) he was diagnosed with Gleason 8 in one side of his prostrate.  We were fortunate to be offered HT and radiotherapy or surgery.  I say fortunate, because like you, we have the chance of a cure.  Yes potential side effects can be devastating, but there is help out there.  Both the oncologist and surgeon felt that because of the high risk disease surgery would be the best option.

My husband had three months of hormone treatment to shrink his very large prostrate before surgery, which he underwent on Friday.  We have both been amazed at how well he is recovering.  He went down for surgery at 8am and was back on the ward at 3.30.  A bit of discomfort, but no real pain (lots of wind!).  We were home yesterday by 3.30.  He is up, walking and doing brilliantly well, just very tired.  As for the side effects, well we will deal with those when and if they come.  Having been on both sides of the fence so to speak, I can understand your thoughts, but I can also sympathise with your wife.  Please do try and talk, she will be worried and frightened too but you can get through this together, but you must try and talk. 

As for the forthcoming op, talk to your nurse or call one of the nurses on this site.  Get yourself down to a local Maggies or cancer support centre.  It took me 5 months following my own diagnosis to get help, but believe me, with support, counselling and possibly even medication you can get through this.  You have to you have no choice and can't do it alone.  You will find a new normal, I promise.  I say that both as a cancer 'survivor' and as the wife of a pc sufferer.

Sorry if I have rambled but your post struck a chord with me.

 

User
Posted 28 Jan 2018 at 17:43

Hi there,

Your post also struck a cord with me.. husband born 1963 G6 diagnosis and recommendation for surgery.

We ran very quickly from the surgery option as the quality of life issues made it a very serious decision- once it's gone, its gone.

I really feel for you as this time last year we had the same decision. Surgery was bottom of our list based on everything we read about low risk diagnosis.

You should take time to make sure all options are completely researched Derek.

Good luck

Clare

User
Posted 28 Jan 2018 at 19:56
D

I do not reply very often to newbies asking for advice, my journey has been trying to say the least and I would not like to put anyone off having treatment. Like others on here your story also struck a chord with me.

I went to all my pre diagnosis and pre op scans and appointments alone, it was my problem, my body and my decision. Not proud of it but I sent my wife a text to say I had been diagnosed with cancer. I did not want to discuss the problem with her but was quite happy to talk to work colleagues and strangers with prostate cancer. Speak to the specialist nurse on this site , the number is at the top of the page , they may be able to put you in touch with a "buddy" who has gone through the same journey. In hindsight not involving the wife was the wrong approach and I would have struggled post op to care for myself. So get you wife involved.

I had four months to make my decision to have treatment or not, but the final decision was made whilst sat on the anesthetic room table 10 minutes before the op. A few weeks later I wondered why I had even considered not having treatment. Like you my main worries were ED and continence followed by cancer. My surgeons main concerns were the reverse of my thinking.

The ED can be overcome with various options and it can be tremendous fun trying to solve the problem. Incontinence can be depressing but surgical techniques have improved and incontinence is not guaranteed. I was initially almost dry 4 days post Catheter removal.

I wasn't mentally ready for the op, why do I want to put my body through an op that will change my life, I am not ill ? Imagine a few years in the future without any treatment and facing a potentially painful death and wishing you had chosen to have treatment. I was not particularly fit, I had lost over a stone but you cannot do a great deal between now and the proposed op date.

My op etc was quite straightforward, I did have a problem with constipation that landed me in the emergency department. I was back at work four weeks after the op and back to my new normal after about six weeks. I have had some additional problems but they are not common, would I do the same again, one hundred percent yes. You have got the opportunity to extend your life, why turn it down.

All the best for the future.

Thanks Chris

User
Posted 28 Jan 2018 at 22:00

Hi Lyn

I was dry 3 weeks after the catheter was removed. It is not to brag that I was dry so soon but merely to offer some hope to others. I understand many have difficulty getting dry. 

The reason I have posted a few times is that people seem to be asking for advise and are asking the same questions on separate posts so I have just added my experiences to their post.

As for the nurses being on hand again I am only going from my experience - seems like I was lucky in every sense.

 

User
Posted 28 Jan 2018 at 22:34

No suggestion that you were bragging - it is really important for new members to hear good stories as well as bad. But I was at one point dealing with my dad, dad-in-law and husband all with prostate cancer and we have never - never - had a call back from the nurse specialist allocated, let alone met her. So I think it is important to offset the good stories with a note of caution that prostate cancer treatment and support is rather a postcode lottery. 

Edited by member 28 Jan 2018 at 22:36  | Reason: Not specified

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

User
Posted 29 Jan 2018 at 10:34

Hi Derek

I read your post and can absolutely understand where you are coming from. I went for Radio Therapy accompanied by 6 months Hormone Therapy but I got very twitchy reading some posts about the after effects of RT. Notably the possibility of rectal incontinence. It wasn't helped by the fact that a friend had had RT and the treatment had damaged his bowel and he ended up in hospital for 2 weeks. I had visions, quite literally, of soiling myself.

But then I made a link, an unlikely link I admit, to various on-line forums for cars. You might be thinking of a particular model and you look at on-line forums and you read a catalogue of disasters even for models that have an excellent record for reliability. The reason for this, of course, is that people tend to go on forums seeking advice or to complain about problems. You almost never get anybody saying "Do you know what, I've had this car for 2 years and absolutely nothing has gone wrong."

Which is a roundabout way of saying that the worst case scenario is exactly that - a worst case - and by no means typical. That's not in any way to belittle anybody's fears or to suggest there are not things to consider carefully but the key thing to have in mind is defeating this disease. I wish you all the best and I've been there and know how you feel.

Pete

User
Posted 29 Jan 2018 at 15:28

Hi Derek, I am new to the site as well ,but can relate to your problem. I have Gleason 6 in both right and left sides , PSA ranging from 5.4 a year ago, down to 2.92 then back up to 3.5, and I go for my  latest set of blood tests next week to get an update. I am on active surveillance and have had 2 MRI scans and 2 sets of biopsies about a year apart. Last report was much easier to understand and feel I am now almost an expert on the terminology etc. !!  5 positive cores out of 14....Maximum % core involvement 10%,maximum cancer length 1mm, the other 4 cancer lengths 0.5mm, so overall Adenocarcinoma, present in 5 biopsy cores, Gleason 6 ,grade group1, so I am told "not to worry" and stay as fit as you can. I have read that biopsies can be hit or miss ,so what if other areas of my prostate have been missed and there is a greater % involvement. Its difficult not thinking about the worst scenario, however my wife has been brilliant and is in the medical profession herself and has kept me "grounded" as it were, so involving a partner is very important as you head through this worrying time. 

Good luck to you and all out there going through the same thing. 

 Keithyboy

 

I have not been offered any treatment as yet , I suppose next week might determine that.But I can sympathise with anyone who is wondering what the best option is when you have a localised 

Edited by moderator 11 Mar 2019 at 22:38  | Reason: Spacing issues

User
Posted 11 Mar 2019 at 22:29

Derek,

reading your post I really appreciate your honesty. It is hard to know what to do. 

I have been having issues for years with my "water works" which I managed by toilet hopping and avoiding drinking on long train journeys. I had the usual symptoms, weak flow, endless need to go and so on. I had regular PSA tests and I even had biopsy about 6 years ago which damn near killed me when I got sepsis. Anyway, after all that time the levels remained on the watchlist until late last year when I had an incident that made me insist on another biopsy.

Actually with hindsight it could be seen as a funny incident. I had been in a meeting at a foreign government agency. All very posh and serious, lots of suits and powerpoint charts and business cards. During the meetings all went well and nothing untoward happened. However as soon as I left the government building I had an immediate and uncontrollable need to pee. There was no way back without spending twenty minutes in security and scanners. There was absolutely nothing I could do, the floodgates were opening and that was that. So I did the only thing possible and popped behind the ornamental shrubs outside the Ministry and let fly. In my haste I didn't quote beat the speed trap and suffice to say the plants got a good hosing as did my suit, shoes and briefcase. After that I had to do the walk of shame across a huge park to the nearest hotel with dark stains on my trousers and head down in shame. I don't think I have ever been so embarrassed in my life.

A month later and after insisting on a scan the new biopsy has been done (under GA this time, nomore torpedo's for me thank you very much) and the results shows up with a Gleason of 6 with all that that means. I discuss the years of problems and options it with my surgeon and agree to have the op. (Robotic). That's it. Decision made. Problem solved.

I had cancer. I knew I had cancer. I know it is serious. 

Strangely I didn't tell anyone for a few days. I couldn't. I guess I just wanted to "own it". You may think of it as denial but that is what I did. In some ways it still feels like someone elses' problem?

When I was diagnosed Xmas was coming and then my daughters 18th so I took the decision to only tell my wife and the people who had to know for work. (The wife is completely stoic and just gets on with things so I wasn't expecting a great drama from her and I wasn't disappointed.) Otherwise I said nothing because I didn't want to upset people and ruin the festivities. (I still haven't told my mother. She would just go into panic.) Christmas came and went and so did the party and two weeks later I went into surgery. On the day of the op I still didn't think it was that serious.

I am now 4 weeks post op. The penny is just dropping. 

I think it has gone well but I still leak like a collander and whilst the scars are healing I haven't really acknowledged the seriousness of the whole thing, even to myself. In fact I get incredibly annoyed with myself for being weak. Why hasn't the leaking stopped? Why can't I get an erection? Why do I get so tired all the time? 

The nurses keep telling me it was major surgery. It just doesn't feel like it. The scars are small and because I didn't make a fuss or tell anyone before I went in it feels like an anti-climax. I don't know if I should be angry or glad: "Where are the flowers and chocolates and weeping fans wishing me well? Should I have had a melt down and changed my life completely? Did I make the right choice? Can I just do that again please. I kind of missed the opportunity last time?"

Above all, I want to get back to normal, but honestly, I am afraid of what normal is. I think the leaking will shame me again and until I can control my bladder I really don't want to leave the house unless I am in a place without any people. But... and this is a big but I am damn well going to have to.

So, that is making me think again about the denial. Maybe I should actually say something. I am sure that people will be supportive and it might even get me to face it myself. I don't think I am scared of having cancer. I am more concerned about what others think. I know it is stupid but that's just how it is for me. Perhaps, deep down I want to make a huge fuss and wail and moan and lash out with anger but right now I would prefer to just go out without the fear of pissing my pants in public.

Up to now partial denial has been a friend. It has stopped me from feeling like a victim and has kept me calm. I hope that your journey towards acceptance that we have had cancer is a good one. Mine has been perplexing but at least I am still travelling. 

User
Posted 11 Mar 2019 at 22:56

I took the totally opposite to dealing with my Gleason 9 prostate cancer.  My oncologist told me I couldn’t have my prostate removed as I had so much cancer they couldn’t guarantee that  it would cure me so I went on the hormone therapy radiotherapy route.

I decided before any symptoms or disappearing for treatment would have people wondering what was wrong with me, I decided to tell my friends and family immediately.  I have always been very fit person retiring from marathon running 20 years ago and taking up competitive cycling as a sport.  As a direct consequence of the hormone therapy affecting my muscle tone my cycling friends soon realised instead of me being at the front-end I was lagging off the back then once I had the radiotherapy the fatigue setting and I  Took up cycling alone as I couldn’t keep up even on a 30 mile ride.  The response I got from my cycling friends once I told them it was amazing they started organising flat easy rides that I could keep up with there was never a word of sympathy in fact there was a lot of banter aimed at my condition which for me was fine and it kept me smiling.  My wife was a nurse for 45 years and all she said was well technology has advanced a lot and I’m sure it won’t be a problem! 

Our three children were worst affected once you use the C word they think you’re on the way out.  Talking to them and explaining that I wasn’t going to drop dead in the next few months and that after treatment I would possibly have 10 to 15 years left hopefully, calmed everybody down.

 So yes, in my case I think telling everybody what I was going through was the right decision for me, but everybody is different 

User
Posted 12 Mar 2019 at 05:42
It's perhaps worth noting that the original poster hasn't been back since his one and only post well over a year ago, so not much point in replying!

Cheers,

Chris

 
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