Apologies if I do not come over as a Mr Fluffy Bunny, but I tend to speak it as it is and I find this can help people "wake up smell the coffee" PDQ. If however, it offends say so, I will back off.
So, IF, you KNOW it will destroy you, then it will, simple. Only you can alter your mindset, do you want to?
Did your job involve working from home? Or did you manage to get out to go to work? Your profile says you are "retired, luckily" not that you lost your job due to your aggrophobia, which was it?
The rises in PSA are not ideal, but over what length of time were you tested? How long did the readings take to rise?
If sex is that important to you, then do something as soon as you can because that will possibly give you the best chance of making a recovery in the SF area. The longer you leave taking action the more likely that what ever is developing inside you may need more radical treatment, cutting more out, to deal with it, possibly?
If your experts are shouting at you to get it out, then if I were you I would want a very convincing argument not to comply, do you have one?
as with Roy above, when diagnosed my priorities were:
1. Life - I told my surgeon t take out whatever he thought might cause me later alarm, and not to leave anything in, I did not want him apologising to me later for a recurrence because he had left cancerous cells inside my body in the mistaken belief that he was doing me favour for retaining a sex life or urine control.
2. Continence was my next priority, I did not want to be going around weeing and or pooing uncontrollably, if possible, but if LIFE meant that I became incontinent, even doubly so, I wanted to be alive to moan about it.
3. If possible I would like to retain the nerve bundles that would enable sexual function, but not if it jeopardised my LIFE.
I was lucky, caught early, moved fast, chose fast, operated on fast, and got urinary control and sexual function restored.
You and your wife really do need to get wise to what is going on PDQ so that you can start to look into it, and make informed decisions about what you will do moving forward.
And, if that means no treatment, you want let whatever is happening or developing inside you take it's course and deal with the consequences, so be it, that is your choice. Your family and friends should and will have to respect that choice.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
So sorry to hear this. Please have the op for the sake of your wife. El.
User
Hi Chris
Firstly welcome to the forum, even though none of us wish to be here but we are where we are I'm afraid. I am surprised the doctors allowed your PSA to rise to such a level before ordering more scans. It's difficult to suggest which options would be available to you until you have a more definitive diagnosis and if these do not pinpoint the areas if any, then there is a scan called a Choline PET/CT scan which is more sensitive and should show where the Cancer is. Your concerns regarding ED is one we all have agonised over, I found the best way for me was to prioritise my concerns which were 1,Life 2, incontinence 3, Erections in that order, as to put it bluntly my way of thinking was dead men don't have sex. With the techniques available, RP nowdays doesn't necessarily mean no erections, especially if they can spare the nerve bundles, but there are a number of other treatments out there so don't despair. Have you talked to the nurses at PCUK as they may be able to answer your concerns.
It wouldn't help to say don't worry as we all know how difficult it is initially we have all been there, but believe me it WILL get easier once you know what you are dealing with, and you have a plan of action in place. If you feel you don't have sufficient information to make an informed decision then tell them you need to see someone who has the time to go through it all with you, have you downloaded the toolkit from this site or you can order it to be posted to you, which gives you some of the questions you could ask of your consultants, and I find recording all my consultations helpful as I can always refer back if I am unsure of what was said at the time,as your head will be all over the place at the moment, also involve your wife by taking her with you as it will help both of you.
Roy
Edited by member 04 May 2015 at 18:02
| Reason: Not specified
User
Hello Chrisj and welcome
Firstly, we NEVER get fed up with new people on here. We were all of us that new person at one stage.
Everyone on here has experiencce in some form of Prostate Cancer, be it the patient, partner or family so we really do know, from first hand, what you are going through.
I am puzzled by the speed involved,in the Consultant's "Get it out now" aspect, bearing in mind they found two non-aggressive cancers and a POSSIBLE rib cancer but which might also be a prior injury. You haven't yet had the defining CAT/CT scans so the consultant is basing his concerns on his experience maybe. Having said that, they are not Gods and they don't always get it right.
What really concerns and worries me, is the fact that you appear to be pushed down a route you really don't want to take and nobody is giving you the information to make an informed decision.
So... you are not going to die in the next few days while you wait for the scans. You may worry yourself into an early grave though if you don't take a step back and review what has been said and what your other possible options are.
How can you be expected to make a choice when you don't know what the choices are.
I have a nephew who is bipolar, various relatives with severe depression and a grandmother who was agoraphobic and rarely left the house so I do appreciate how difficult all of this is for you to cope with BUT, you have to take control as much as you can, not just for yourself but for your family and friends.
You are already worrying about your wife having an affair if you develop ED. Do you really not trust her that much, isn't that a bit insulting to her?
As far as your varied and exciting love life is concerned, many of the treatments available do affect a man's ability to obtain and maintain an erection but that isn't to say all of them do and there are options for help in that department. The fact that you already have a slight ED problem due to testosterone levels gives you the advantage over a lot of men on here who have to face the reality of ED without that prior knowledge.
There is no reason to suppose that your exciting sex life will cease altogether if you have an operation. It just means you have to be more creative.
As far as I can make out, you are running ahead of yourself and allowing your fears to take over. That is not abnormal in any way, as I've already said, everyone on here has experience of Prostate cancer so to some extent a lot of us will have done the same running away!
Go and see your GP, both of you together, and explain your fears. Don't be railroaded by the hospital into doing anything until you have sussed out all your options and have had time to assimilate them.
Unless, that is, the results of the CAT/CT scans prove that you really do have to move fast. If that happens then at least you will know there is a reason for haste.
Download or apply for The Toolkit from this site. They are very helpful booklets regarding treatments, emotions and dealing with cancer. As has already been said there are nurses on here you can telephone for advice too.
Your confusion and distress are quite understandable. Your bipolar condition and depression are not going to help you so seek that help through your GP.
We are here to help but remember God (if you believe in such things) helps those who help themselves. You may find that by taking control of gathering the information that it helps you rationalise it all.
Good luck and best wishes to both of you. You will need to support each other in whatever the future holds.
Edited by member 04 May 2015 at 19:35
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Chris
Welcome to the forum you will get practical advice and support here but we are all just humans who in some way or another are involved with PCA. Most of us have no medical qualifications.
As a woman who lost her husband to this disease possibly because he was unlucky enough to have no real symptoms, and possibly because he had an extremely rare agressive and non responsive cancer, I would just reiterate what Dave and others have said you need to take action especially if your PSA is rising rapidly as seems to be the case.
Formulate questions that you need answers to and document them. Then decide on your priority plan, discuss all of this with your wife and make sure the medical team give you all the answers you need to make an informed decision. This can only happen when all tests are done, you are given your options and have had suitable feedback on the pros and cons of each option. It must be your decision and one that you can move forward with, no looking back or saying if only.
You say that you are bipolar so are you taking your medication regularly and do you see anyone for counselling sessions? You may want to tell them about this latest blow as it can impact on any treatment you might need to cope mentally with this disease going forward.
I know this must all be overwhelming but you can work through this if you draw on the help that will be available to you.
Follow what Dave,Roy and El have already said and never ever think we have no time for those who WANT help and support.
Xx
Mo
User
Hi Chris
Welcome to the forum.
You have done the right thing in coming on this forum. There are some wonderful and kind people on the forum and they have really helped me cope for over 2 years. All the people on the forum have been affected by PCa and know first hand all the emotions involved.
Forum friends have already given good advice so I won't repeat it. The purpose of my response is to try and give you some hope. I had op to remove prostate 29 months ago and here I am still alive to tell my tale.
My priorities were the same as already stated - life, continence and EF - in that order. I also considered the feelings of my wife and she wanted me alive. I can also add that my wife and I are as close as we ever were and have a wonderful relationship.
Whatever you decide to do I wish you all the very best.
User
Chris
I considered doing nothing, even sat on the anaesthetist's table I was thinking of not having the op, one year later life is almost back to normal and I have a chance of many years in front of me and I wonder why I even considered doing nothing. If you do nothing will you spend time thinking what if ? We still have an active and enjoyable sex life. Lots of good advice from the others.
Thanks Chris
User
Hi Chris,
I had my prostate removed 6 weeks ago. When I was told I had cancer and the options available I made the decision early that I wanted the 'badness' removed as I would a dead decaying tooth. It was an easy decision after watching the undignified death my father had after his prostate cancer was discovered too late and had spread to his bones and legs.
Your mental health issues do not proclude you from having the capacity to decide your destiny with this issue. You should listen to the advice,ask questions, share your concerns and discuss your options with your wife. Inevitability though no one can make the decision but you.
I am fine after my laperascopic procedure and the fear of the operation was far worse than the operation itself. I am 58 and still have dozens of things on my bucket list. I had 2 days in hospital and was only taking paracetamol when I came home. Please feel free to send me a P.M. if you want to know any more about my op. It's still fresh in my mind.
Good luck.
Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Having a brother who is bipolar and knowing how it has affected his life gives me some understanding of your predicament. He recently had a knee operation which has done him the world of good but the time leading up to it was a nightmare for him. If your wife has supported you through your dark times, then I would guess she would have no reason to look elsewhere afterwards. 13 months post op, things are returning to normal for me - if you need treatment, whatever you choose, my advice would be to go for it. The earlier you do it, the more likely side effects will be limited.
Paul
Stay Calm And Carry On. |
User
Hi Chris
There could be other suitable treatments - have you seen an oncologist to discuss all options? If any cancer is still localised then Brachytherapy or External Beam Radiotherapy may be suitable options for you to consider rather than prostatectomy.
dl
Show Most Thanked Posts
User
So sorry to hear this. Please have the op for the sake of your wife. El.
User
Hi Chris
Firstly welcome to the forum, even though none of us wish to be here but we are where we are I'm afraid. I am surprised the doctors allowed your PSA to rise to such a level before ordering more scans. It's difficult to suggest which options would be available to you until you have a more definitive diagnosis and if these do not pinpoint the areas if any, then there is a scan called a Choline PET/CT scan which is more sensitive and should show where the Cancer is. Your concerns regarding ED is one we all have agonised over, I found the best way for me was to prioritise my concerns which were 1,Life 2, incontinence 3, Erections in that order, as to put it bluntly my way of thinking was dead men don't have sex. With the techniques available, RP nowdays doesn't necessarily mean no erections, especially if they can spare the nerve bundles, but there are a number of other treatments out there so don't despair. Have you talked to the nurses at PCUK as they may be able to answer your concerns.
It wouldn't help to say don't worry as we all know how difficult it is initially we have all been there, but believe me it WILL get easier once you know what you are dealing with, and you have a plan of action in place. If you feel you don't have sufficient information to make an informed decision then tell them you need to see someone who has the time to go through it all with you, have you downloaded the toolkit from this site or you can order it to be posted to you, which gives you some of the questions you could ask of your consultants, and I find recording all my consultations helpful as I can always refer back if I am unsure of what was said at the time,as your head will be all over the place at the moment, also involve your wife by taking her with you as it will help both of you.
Roy
Edited by member 04 May 2015 at 18:02
| Reason: Not specified
User
Apologies if I do not come over as a Mr Fluffy Bunny, but I tend to speak it as it is and I find this can help people "wake up smell the coffee" PDQ. If however, it offends say so, I will back off.
So, IF, you KNOW it will destroy you, then it will, simple. Only you can alter your mindset, do you want to?
Did your job involve working from home? Or did you manage to get out to go to work? Your profile says you are "retired, luckily" not that you lost your job due to your aggrophobia, which was it?
The rises in PSA are not ideal, but over what length of time were you tested? How long did the readings take to rise?
If sex is that important to you, then do something as soon as you can because that will possibly give you the best chance of making a recovery in the SF area. The longer you leave taking action the more likely that what ever is developing inside you may need more radical treatment, cutting more out, to deal with it, possibly?
If your experts are shouting at you to get it out, then if I were you I would want a very convincing argument not to comply, do you have one?
as with Roy above, when diagnosed my priorities were:
1. Life - I told my surgeon t take out whatever he thought might cause me later alarm, and not to leave anything in, I did not want him apologising to me later for a recurrence because he had left cancerous cells inside my body in the mistaken belief that he was doing me favour for retaining a sex life or urine control.
2. Continence was my next priority, I did not want to be going around weeing and or pooing uncontrollably, if possible, but if LIFE meant that I became incontinent, even doubly so, I wanted to be alive to moan about it.
3. If possible I would like to retain the nerve bundles that would enable sexual function, but not if it jeopardised my LIFE.
I was lucky, caught early, moved fast, chose fast, operated on fast, and got urinary control and sexual function restored.
You and your wife really do need to get wise to what is going on PDQ so that you can start to look into it, and make informed decisions about what you will do moving forward.
And, if that means no treatment, you want let whatever is happening or developing inside you take it's course and deal with the consequences, so be it, that is your choice. Your family and friends should and will have to respect that choice.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hello Chrisj and welcome
Firstly, we NEVER get fed up with new people on here. We were all of us that new person at one stage.
Everyone on here has experiencce in some form of Prostate Cancer, be it the patient, partner or family so we really do know, from first hand, what you are going through.
I am puzzled by the speed involved,in the Consultant's "Get it out now" aspect, bearing in mind they found two non-aggressive cancers and a POSSIBLE rib cancer but which might also be a prior injury. You haven't yet had the defining CAT/CT scans so the consultant is basing his concerns on his experience maybe. Having said that, they are not Gods and they don't always get it right.
What really concerns and worries me, is the fact that you appear to be pushed down a route you really don't want to take and nobody is giving you the information to make an informed decision.
So... you are not going to die in the next few days while you wait for the scans. You may worry yourself into an early grave though if you don't take a step back and review what has been said and what your other possible options are.
How can you be expected to make a choice when you don't know what the choices are.
I have a nephew who is bipolar, various relatives with severe depression and a grandmother who was agoraphobic and rarely left the house so I do appreciate how difficult all of this is for you to cope with BUT, you have to take control as much as you can, not just for yourself but for your family and friends.
You are already worrying about your wife having an affair if you develop ED. Do you really not trust her that much, isn't that a bit insulting to her?
As far as your varied and exciting love life is concerned, many of the treatments available do affect a man's ability to obtain and maintain an erection but that isn't to say all of them do and there are options for help in that department. The fact that you already have a slight ED problem due to testosterone levels gives you the advantage over a lot of men on here who have to face the reality of ED without that prior knowledge.
There is no reason to suppose that your exciting sex life will cease altogether if you have an operation. It just means you have to be more creative.
As far as I can make out, you are running ahead of yourself and allowing your fears to take over. That is not abnormal in any way, as I've already said, everyone on here has experience of Prostate cancer so to some extent a lot of us will have done the same running away!
Go and see your GP, both of you together, and explain your fears. Don't be railroaded by the hospital into doing anything until you have sussed out all your options and have had time to assimilate them.
Unless, that is, the results of the CAT/CT scans prove that you really do have to move fast. If that happens then at least you will know there is a reason for haste.
Download or apply for The Toolkit from this site. They are very helpful booklets regarding treatments, emotions and dealing with cancer. As has already been said there are nurses on here you can telephone for advice too.
Your confusion and distress are quite understandable. Your bipolar condition and depression are not going to help you so seek that help through your GP.
We are here to help but remember God (if you believe in such things) helps those who help themselves. You may find that by taking control of gathering the information that it helps you rationalise it all.
Good luck and best wishes to both of you. You will need to support each other in whatever the future holds.
Edited by member 04 May 2015 at 19:35
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Chris
Welcome to the forum you will get practical advice and support here but we are all just humans who in some way or another are involved with PCA. Most of us have no medical qualifications.
As a woman who lost her husband to this disease possibly because he was unlucky enough to have no real symptoms, and possibly because he had an extremely rare agressive and non responsive cancer, I would just reiterate what Dave and others have said you need to take action especially if your PSA is rising rapidly as seems to be the case.
Formulate questions that you need answers to and document them. Then decide on your priority plan, discuss all of this with your wife and make sure the medical team give you all the answers you need to make an informed decision. This can only happen when all tests are done, you are given your options and have had suitable feedback on the pros and cons of each option. It must be your decision and one that you can move forward with, no looking back or saying if only.
You say that you are bipolar so are you taking your medication regularly and do you see anyone for counselling sessions? You may want to tell them about this latest blow as it can impact on any treatment you might need to cope mentally with this disease going forward.
I know this must all be overwhelming but you can work through this if you draw on the help that will be available to you.
Follow what Dave,Roy and El have already said and never ever think we have no time for those who WANT help and support.
Xx
Mo
User
Sandra
You may have gathered our posts hit about the same time so I had not seen yours.
Xx
Mo
User
Hi Chris
Welcome to the forum.
You have done the right thing in coming on this forum. There are some wonderful and kind people on the forum and they have really helped me cope for over 2 years. All the people on the forum have been affected by PCa and know first hand all the emotions involved.
Forum friends have already given good advice so I won't repeat it. The purpose of my response is to try and give you some hope. I had op to remove prostate 29 months ago and here I am still alive to tell my tale.
My priorities were the same as already stated - life, continence and EF - in that order. I also considered the feelings of my wife and she wanted me alive. I can also add that my wife and I are as close as we ever were and have a wonderful relationship.
Whatever you decide to do I wish you all the very best.
User
Chris
I considered doing nothing, even sat on the anaesthetist's table I was thinking of not having the op, one year later life is almost back to normal and I have a chance of many years in front of me and I wonder why I even considered doing nothing. If you do nothing will you spend time thinking what if ? We still have an active and enjoyable sex life. Lots of good advice from the others.
Thanks Chris
User
Wow thanks everybody -- so much really good advice . I didn't get any email notifications that people had replied , so sorry for the delay ok . So many people said nice things .
Elaine and I saw doctor 2 days ago . He apologised for such a push and when told of my real mental issues agreed it was probably a bad thing , although obviously he stated he only had my best intentions in mind .
We decided I have a guided TRUS with 3 samples next Tuesday -- They did find an irregular area on the second MRI which is next to the bladder neck . In addition im having a whole-body CT tomorrow to check the ribs , lymphs etc . So things are moving fast now .
I am calmer as is my wife , and we know final answers will come to us 27th May
Some of you answered my questions and asked your own . Im actually scared to reply to some as I don't want a public battering . I don't think I can read the posts while replying .
It seems so obvious to me that everyone on here was desperate to survive foremost and that makes so much natural obvious sense . I so don't want people to think im feeling sorry for myself , but im not enormously worrying about that . My wife and only child , and my step-children would be the only reason I would have surgery . If I was alone I would do absolutely nothing tbh .
I think ive reached the stage where I would have surgery so as not to let everyone down. I love my wife and trust her but have zero self-esteem going on.
Anyway im not there yet ! The 27th will tell . Im sorry if I haven't replied fully enough to some questions
User
Hi Chris,
I had my prostate removed 6 weeks ago. When I was told I had cancer and the options available I made the decision early that I wanted the 'badness' removed as I would a dead decaying tooth. It was an easy decision after watching the undignified death my father had after his prostate cancer was discovered too late and had spread to his bones and legs.
Your mental health issues do not proclude you from having the capacity to decide your destiny with this issue. You should listen to the advice,ask questions, share your concerns and discuss your options with your wife. Inevitability though no one can make the decision but you.
I am fine after my laperascopic procedure and the fear of the operation was far worse than the operation itself. I am 58 and still have dozens of things on my bucket list. I had 2 days in hospital and was only taking paracetamol when I came home. Please feel free to send me a P.M. if you want to know any more about my op. It's still fresh in my mind.
Good luck.
Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Having a brother who is bipolar and knowing how it has affected his life gives me some understanding of your predicament. He recently had a knee operation which has done him the world of good but the time leading up to it was a nightmare for him. If your wife has supported you through your dark times, then I would guess she would have no reason to look elsewhere afterwards. 13 months post op, things are returning to normal for me - if you need treatment, whatever you choose, my advice would be to go for it. The earlier you do it, the more likely side effects will be limited.
Paul
Stay Calm And Carry On. |
User
Thanks again everybody for some solid kind advice and hope . chris
User
Hi Chris
There could be other suitable treatments - have you seen an oncologist to discuss all options? If any cancer is still localised then Brachytherapy or External Beam Radiotherapy may be suitable options for you to consider rather than prostatectomy.
dl
User
Hi Devon lad,
I expect I will find out all on 27th May !! I've had the CT now and 2nd TRUS tomorrow guided by consultant rather than an ultrasound guy . He said I could have had a 2nd Template Biopsy , but they really want to get things moving because of my age . As I said they haven't REALLY found anything aggressive -- 2 small cancers ( can't remember the Gleason ). However they feel SURE its not a benign problem after all the checks . They worried about very rapid rise in PSA 6 to 34 in maybe 1 1/2 yrs !! Anyway Elaine and I going on 27th . Thanks again everybody.
PS Wow what a rush when they give you the dye during the CT scan . I wonder if that's what drugs feel like ?
User
Well Good Luck tomorrow Chris J and Elaine and also for the 27th May for results
Positive thoughts coming your way.
Best Wishes Sandra
We can't control the winds - but we can adjust our sails |
User
Grrrr sent a big reply re tests etc and site bombed and lost my message. Will post again when time
User
Hi Chris,
re your "Posted 08 May 2015 14:21:27" public battering. No one here is going to batter you, publicly or via private messaging.
It is difficult, nigh on impossible to convey any let alone every intended nuance or inflection with the written word that might or might not be there were it spoken.
Re LOST POST?
The site does crash every now and then, and has some maintenance issues periodically. You may like to compose your post in a document and then cut or copy the text and paste it here in future? May save the frustration of losing a lot of typing? Or type it here but "copy" the text regularly so if it crashes you have the past option?
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Thank you dave I appreciate your comment . I know you all good here but was worried my personal views on my health could actually upset others more poorly than myself !! I'm going to try to post again on a new post . People may be interested. Thanks again
User
I think ive posted but it has to be moderated ?? Should I have done it on this original post ?
User
Chris
if it relates to this conversation you should just post here. You only need to start a new thread or conversation if it is about a differnt matter or you just want to keep things separated.
Every new thread has to go through the moderator which can take days. I posted soehting new today at 1 and it still has not come up.
The problem is that the post gets time stamped when you submit it and when it finally gets released by the moderator it goes into that timeslot. Most of us read by looking at recent conversations since the last time we looked. So sometimes a new post can go completely unseen ... if that makes sense?
I will watch out for your post and respond so that it gets bumped back up the page.
xx
Mo
User
Ok thanks Mo . I just thought that as my first post was a welcome then any future stuff may get ignored ! Oh well