Hi Chris,
Sorry to read that your options appear to be limited to surgical intervention only. Did your MDT explain why they felt that this was the only route forward?
As for the side effects, they can not assure you of anything. None are guaranteed to happen just as none are guaranteed not to happen. The most likely side effect is for a ling and happy life, albeit a different lifestyle but you do get used to that as time passes as you adapt to your new normal lifestyle. Bear in mind that you will tend to get here the worst case scenarios I suspect as these will be people looking for help and ideas to improve their lot after surgery etc. Most men will cope with zero or minor consequential interference and not be online asking for help. Or they may be elsewhere on others sites.
If you are to have the op, will it be open or robotic? I am not sure how much work you will have done but it seems a lot, so may be open?
We have all been in the waiting room full of older men, wait until you get to the ward. I thought I was a youngster at 55, but you are lucky that you were diagnosed, do not forget that.
atb
dave
Edit to add, EF may take some time to recover, some men get it straight away or PDQ, some men take a while, some men need artificial help. No point worrying about this until you have to deal with whatever state you are dealing with.
Dry orgasm, some women prefer this. For example no damp patch in bed, no potential discharge if engaged in oral sex.
Urinary incontinence, may take a while to recover this, some men get to back straight away, or PDQ, others tale longer, some need artificial help. Again, no point worrying about this until you have to deal with it.
Whatever issues you encounter you are fortunate to have beside you a loving and supportive partner, so you will not be dealing or coping alone.
Edited by member 27 May 2015 at 18:33
| Reason: Not specified
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
Hi Chris,
My Husband is pretty much in the same position as you and a young pup at 46! His only option is also Surgery, he is having Da Vinci on. 9th July. When we saw Oncologist they said he has poor Urine flow so if the wanted Brachytherapy he would have to have a TURP 6 months before so really decision was made as there was no need to have 2 ops in 6 months - he has now got his head around it and at least we know the PSA will go down straight away. As for the ED and incontinence somebody had written here recently that you need to decide what is most important to you and in what order so we agreed that Life, Continence and ED are the most important to him. Also our Oncologist said if he was talking to a man 10 years older he would advise watchful waiting but as Stuart is so young he couldn't guarantee how quick/slow the Cancer would progress in a younger man and we could be in a worse position 10 years down the road when he is still a young 56.
I hope it all goes well and as you said the decision has now been taken out of your hands so now is the time to do your pelvic floor exercises before the big op, it helps with the incontinence😊
Best wishes to. You and El,
Trish
Edited by member 27 May 2015 at 19:08
| Reason: Not specified
User
Definitely not rambling Chris, you've been in turmoil trying to select your option and then finding out that there was actually only one on offer - a spanner in the works to say the least!!!
Steve said he wished that he had been "told" what he was having done then he wouldn't have had to make a choice, it would've been made for him. But your choice has now been made for you, a treatment plan sorted and your surgery booked.
El is there for you every step of the way and the PCUK "virtual buddies" are here for you too if you need a little extra support, but you know that already.
Enjoy your San Miguel, you earned it, I hope El's getting a glass of something nice too?
All best wishes
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
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Hi its Chris
Thankyou for your support as always . I got drunk last night so haven't responded politely as I should have done . Maureen it will be interesting to track your journey as it was what I was offered then taken away from me . But I couldn't make my mind up anyway haha .
And Trish its nice to meet you . So your husband and I will be on the same journey but me first Grrr . It will be great to exchange notes and advice etc . All the best luck .x
Thankyou Countryboy as you have given me some hope and good advice these last few weeks and it will be taken on board . Its going to be Lapro by hand . Ive not nagged for robotic or anything but he has great pedigree -- I have a consultant friend who had a major sniff around.
Thankyou Sandra for ongoing support. It all helps . Im trying to be brave ( I am brave and used to pain ) . And im not going to post on here whinging. Im not great inside -- in fact im distraught massively. And I cant read the future . And im going to hate incontinence ( might be worse due to bladder reconstruction - the cancer is on the bladder but not in it ), and im TERRIFIED about erectile dysfunction as it has always been so important to me ( maybe unhealthily so ) . But we are who we are .
Obviously I wont be posting now other than to maybe help others on their posts . I want to try and share my journey with others ., as ive taken comfort and support from reading theirs .
So here we go -- awesome 48th on june 7th hopefully , then in someone elses hands on 15th June . We'll see how it goes !!
Chris
User
John had his bladder reconstructed as part of the RP (but open surgery not LRP) and if anything, he was dry more quickly than most.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris
I have a brother who is bipolar, so I have some understanding of your thought processes. You will worry more but, easy to say and not so easy to do, trust in whatever decision you make, ensure you get full physical and emotional support from day 1 by talking to all parties involved, (medical and family), and you won't regret your choice.
I am enjoying life more than ever 13 months post op, and you can do the same.
Paul
Stay Calm And Carry On. |
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Thank you Paul and Lyn. I AM distraught but am accepting what has to be done and will just grit my teeth and get on with it. We have good back-up and support both mental and physical - even spiritual from some friends
I today UPDATED my profile to explain exactly my journey should anyone wish to read it or someone new maybe compare it to their own circumstances . Thank-you to Prostate Cancer UK online Community
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I had such an enormous wobble last night , feeling violently ill , tired , depressed , shaking inside etc . I just had to hit the sack after what had been a spell of slight positivity.
Just feel so wretchedly unhappy about what is about to happen me , and how it will effect everybody. I massively have to apologise to people on here that are in the sensible camp , but not once since this happened to me have I thought "oh no i've got cancer / I must get this out of me / I'm going to die " . All I can think , and what keeps going round and round in my head is " I don't want the operation / I don't want to go on / I don't want this to change my life / I don't want this to affect my marriage as it will / I don't want the inevitable horrible arguments ahead , I don't WANT to be blo...dy Impotent at 48 "
Round and round in my head making me sick to the stomach , as I don't have any choice . I keep making the right noises to people saying " Yeh well I have to do the right thing for my wife and family " . When in fact I don't want to do it !
Is it always the right thing for a man to "man-up" , "do the right thing " and " be there for everyone" , or do you get a choice in your own life - as at the end of the day it is your own life !
El and I see the family doctor together on the 2nd , and straight after we get an hour together with my lovely compassionate female psychiatrist , who is genuinely worried about my near future .
I followed Louise's post so closely yesterday and it broke my heart . I feel so sorry for them both and hope that it all comes good. I sympathise for them both . It made me so sad as I know in months I will be in the same boat and it sucks to be honest that people have to go through this .
I read her last post last night , and just saw me down the line......
Quote
""" I think the fact that he has (touch wood) been cured is part of the problem in a weird way. He had no symptoms so went from being completely well to incontinent and impotent. And because it was caught early and he was cured, everyone keeps telling him he's been very lucky. And he doesn't feel it""""
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I wonder if you will be able to receive or process the help that you need here? Maybe you could consider altering your thought cycle? Have you considered speaking to a counsellor, your GP or anyone else who may be able to help you?
Most if not all the possibilities that you have expressed concern about may not happen, yet you appear to be planning for the future as if the worst case scenario has happened?
The only fact that you have not considered is that you may not come around after any surgery? When you are about to go under and the anaesthetist casually informs you that there is a 1 in a, I forget how large the next figure was, but it wasn't large enough for me, it is rather sobering. And then you wake up, and it is done.
While there may not be much control that you can exercise over the physical medical aspects of your situation, there is something that you can do to control how you deal with it mentally and this will impact on how those around you deal with it and you.
Irrational thinking serves no useful purpose.
Hopefully you can alter yours?
artb
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
Chris I think the fact you are seeing your Psychiatrist on Tuesday is good. Hopefully she will be able to offer you the support you need.
I am aware that bipolar can cause delusional or irrational thinking. But for what it's worth, and in my opinion, I don't think your thoughts are irrational. If someone had said to me there's a real chance you will be incontinent and impotent by your mid fifties I would have requested they put me down first.
Your thoughts are rational as you have read some of the stories on here and it makes your dx real. However, most of the people on here are here as they have ongoing problems. The majority of men with PCa won't even have seen this site. A lot of those men will now be getting on with their lives and will have got over their side effects.
I hope your consult with your Psychiatrist goes well and you get the support you need.
Keep posting mate as people who are on here are standing with you
Bri
Edited by member 31 May 2015 at 13:34
| Reason: Not specified
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Hi Chris,
I haven't replied to your posts earlier as we are on a different treatment path. You ask if you as a man have choices (I am assuming you mean to go ahead and have the RP or not) , we all have choices and I have just posted about one of Trevor's half brothers who chose not to have any treatment , I don't know the full story but ED was his main reason for not going ahead. He lived for 3 years .
You are right there are no guarantees after the OP but some men regain sexual function fairly quickly and yes you are young to have PC but your age may play in your favour. Your healing process will be faster than say a 70 year old. A very wise man on here once said Dead men don't have erections. Sometimes in life the worry of what might happen can be far worse than what actually happens.
I see you have a young son and I am sure that when you look at him you think of the future, try and stay focused on a positive future , don't get me wrong I am a negative Nelly myself and replay all of the worst case scenarios in my head so I do understand how you are feeling and this must be so much worse with your BP.
Unfortunately choosing not to have the RP will almost certainly give you ED the Hormone Treatment will do this and a progressing disease will also do this. You have a more than fighting chance at the moment, wabbles at this stage are normal .
We are all behind you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Chris,
It is not possible to predict with accuracy how much longer in terms of life span surgery and maybe in need further treatment might give you over doing nothing but the difference could be considerable albeit with potential side effects as have previously been discussed. By having the surgery you will be demonstrating to your family as well as yourself that you are doing the best you can to stay with them for longer and try to at least stave off what can be a very unpleasant way of leaving this world.
Something that you have most probably considered but I can't recall having been mentioned in this thread is the possibility of having some of your sperm frozen as you and your good lady may wish to have another child at some stage. A very personal choice for you both to consider before any surgery.
Barry |
User
Hi Chris, sorry I have not posted before but felt I had nothing to add until now.
We are similar/ not similar, I was diagnosed last October age 49, I have 3 kids, 10, 15 and 17, Gleson 9 PSA was 342 on dx now 5.
Before reading this, don't get me wrong, I have daily wobbles and tears, just had a bout due to C, prognosis statistically 4 years, never given any options ie HT plus chemo and RT only, toe and finger nails in a bad way, just had to self enema ready for RT this week ( why they make you practice twice before each session Lord knows), chemo ended but stopping taking steroids cold turkey may have has an effect on me mentally and to top it all have just got back from a "get away from it" holiday but had terrible tooth ache for the last 3 days so ruined that plus of course not an erection in sight this year but............
Stats are based on history and in the last 10 years where most stats come from, there has been massive advances in PC treatment so I genuinely believe any stat should " on average" move longer, those stats are not usually age divided, you like me are relatively young so I think that gives us a better chance so sod too much reliance on stats( accepting dark thought are going to happen).
As for sex, well I was a great fan of it and it's true to say that if you have a libido still ( as you clearly do) then you are going to miss it ( or think you will) however once the HT and other procedures kick in there is a good chance that ( statistically ha ha) you may not be so bothered. I am being selfish here ( ie not considering my wife's needs) but I have replaced sex with more running. There are still things you can do for your wife but more out of love for her rather than what's in it for me.
As has been said in earlier comments, sex v ( quality) life no contest for me or my wife , I am closer than ever to my family, feel good 90% of the time and plan things in rolling 3 month periods. I realise before I used to plan a holiday 12 months in advance and semi wish my life away to that time. Now I seize every day and have crammed more into the last 6 months than I would have before in 3 years.
The above may not make your choices any easier as I am not in your situation in that regard but what matters most is being around with general good quality of life as far as I see it , you may disagree of course.
A final thought, I am employed in the banking industry (boo hiss I hear the forum say) but one lesson we have learnt ( although I would say that I have never been involved in all the bad stuff) before we make any decision now is to think what today's action will look like under scrutiny in 5 or 10 years time, if we think we could hold our head up morally then we have made the right decision. So perhaps do that for your dilemma, in 5 or 10 years what would have mattered most in those proceeding years? In any case you may be able to have cake and eat it anyway.
Sorry for the long comment, hope I have not offended , take care
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi again Chris,
have thought about my earlier post and wanted to clarify my view, my "irrational" may be your "normal", "usual" whatever? I have not walked a mile in your shoes, from what you say, my issues, largely dealt with, lucky me, are nothing compared to what you are dealing with, PCa Bi-Polar etc.
I tend to give it straight, no fannying, tough love, maybe, and maybe I got you wrong earlier?
Stay here, draw strength from here, 'here" is always here for you.
atb
dave
Edited by member 31 May 2015 at 21:23
| Reason: Not specified
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
Chris
I am so sorry everything is all topsy turvy for you right now, most men that I know who have been in your situation with PCa have been exactly the same, had the same dreams the same fears and anxieties. Some have had nagging doubts right up to the second the anaesthetist does his job before surgery. Others have gritted their teeth and gone for it hoping and praying they have made the right decision just wanting that cancer out, gone bannished and who shives a gite what happens later.
As a woman I cannot possiby understand what is going through your mind about your Cancer, those feelings and insecurities cannot be felt by me or any other person who is not walking exactly the same path that you are. However I can chat with you here and try to understand how El and your family and friends might feel. I can try and be supportive and I do have a really good understanding of the issues BP can throw into this already difficult situation. My Father and my eldest Sister Jen suffered for many years with BP,
You need not worry about posting under the influence of San Miguel ..Many of us have been down that route of course I would worry if you were taking meds for BP that do not work well with alcohol of any sort but I am sure you are well used to what you can and can't manage on that front.
Anyway you like me have a birthday coming up, mine will be a bit tricky too but I am determined that I will have a good one and I hope you do too.
The decision has been made for you and surgery it is so try to realign your thoughts, you know how to do this and I am sure your Psychiatrist will help you with this during the week.
I just wanted to post so that you know there are a whole bunch of us here who are with you in spirit and willing you along every step of the way.
All the very best
xxx
Mo
User
Chris,
You know my story. I had the op 9 weeks ago. What I failed to mention was how scared I felt. Your thoughts and fears I would imagine are not unusual. I had convinced myself that although there is a 250,000 to 1 chance of dying under anaesthetic I would be the one. I was certain I would be incontinent for the rest of my life. In reality I am virtually back to full control. I didn't want anymore kids at 59 but as previously stated I would have frozen my sperm if I did. I have not had a sniff downstairs in the erection department but I am sure I will get stirrings back. If I don't I will be alive to support my family and offer them my ,often unwanted, advice.
You are going to feel anxious. I am a relatively calm pragmatist but as I said earlier I got things out of perspective. Your mental health condition cannot be blamed for the fear of the unknown that lies ahead. Sometimes you just have to put your trust in others. When I get a little anxious about flying I always say to myself 'the captain wants to get there in one piece too.'
Take care,
Paul
Edited by member 01 Jun 2015 at 09:52
| Reason: Not specified
THE CHILD HAS GROWN, THE DREAM HAS GONE |
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Thanks to everyone who posted overnight ( I couldn't log on ). I don't really know what to say to be honest ! Either in a positive light or a negative light . I always talk too much , and my mum used to remind me " you cant have a good conversation if you don't listen " Im desperately trying to listen to you all , and am grateful for the advice you have all given me . At the end of the day I have no choice . And yes I have hoped I don't wake up from the anaesthetic many times over . Ill just have to face what is happening , but we are both terrified of the consequences and future repercussions. Which are very real given my history .
I'll try to remember to not post when im down -- ive said that once before but did anyway . This time ill try harder ok .
Best wishes Chris
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When you wake from that anaesthetic Chris your new life begins.
No it won't be the same, but there isn't anything yet to say it will be a lot worse.
Terrified - of course you are. You are stepping into the unknown so it is to be expected.
If an expert told you that you needed to strap on a parachute and jump off a cliff in order to save your life, would you be anxious to take that step towards the edge.
You'd be a strange one if you weren't. You'd firstly worry that the parachute wouldn't open but it will and although the journey to the ground may well be a bit of a bumpy ride they'll be people at the bottom to make sure you have a safe landing, with your loved ones waiting to greet you and say "well done"
As for posting or not when you are down, that is up to you. There are many on here who have benefited from the propping up that we are very good at so don't feel you have to be an outcast.
We'll offer the support for as long as it's needed, until you can stand alone and say "Bloody hell - I did it".
Best wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Chris
just sent you a PM did anyone tell you If there was an Olympc gold medal for talking Mo would win it hands down ... NO .. i'm surprised so there you go I just told you!
You post whenever you need to we will try to understand. I have posted in a terrible state before now, very emotional or under the influence of too much wine, sleep deprived, angry when I misunderstood something or just plain scared and I am not walking the path that you are.
Have faith in yourself
best wishes
xx
Mo
User
"I will try to remember not to post when I am down". Gosh, that's exactly when lots of us DO post. Don't worry about it - there is usually someone around to give you a reply whether you want it or not!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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