John,
You are probably at the most frustrating and infuriating part of your particular PCa experience. As far as I am aware there is still no one best option to deal with PCa? So, you have HIFU, Brachytherapy, open surgery, Robotic assisted surgery, External beam therapy, Radiation, Hormone. Are there more? Probably.
Various opinions and views - confusion.
Some people will suggest that if you or for radiation treatment as your first or preferred option, then you may not be able to have any surgery later as the radiation turns the prostate to mush and it is then too difficult to remove. Some people will say that in some cases this is not the case and you could have radiation treatment and you may if you need it later and ask for it, find a surgeon who will operate.
The side effects of radiation hormone, seed (Brachy) I do it not know enough about, I had the Robot. Not saying you should.
Potential side effects of the robot explained to me were ED, urinary incontinence, bowel incontinence, both, and as I was in the prep room it was also pointed out to me that a very small percentage of patients die on the table. Nobody said that my penis would probably end up shorter, by maybe up to an inch due to the length of urethra removed when they cut out the prostate.
No medical professional I met with advised me to go with them, they only offered there specialism, and then suggested I speak to others before making my final choice. Although after I had the surgery, several medical professionals said that they would have opted for my choice if they had been me. Maybe they were being tactful?
You are where so many of us were, decision time where no one treatment seems to be the best or guarantees success.
And as for potential side effects, remember they are all ONLY POTENTIAL., including LIFE. Many men have none , many have some over the long or short term. Fitness and age seem to be a factor, and also the skill of the surgeon, and to a degree luck.
For those who have had side effects that make them rue there initial treatment decision, this is of little use to you. They are them, and although we all have the same bits and may have had similar or the same surgical procedure, the result is not guaranteed, and no way of knowing the side effects.
In may case I read a lot, asked a lot, and opted for the best choice for me, in short I wanted it out as soon as possible. The idea of leaving a cancerous lump in me, no. I could not entertain this option at all. For me surgery was the only option. In my view I was treating the cancer and my whole being head and heart.
At prep and meeting the surgeon I was very clear to him, take it out, and, told him that if you are at all concerned take whatever else out you think you need to. I told him that I did not want him apologising to me a year later when telling me that I had a recurrence because he had tried to do me a favour and left some bits in.
My priority wish list was
1. Life
2. Urinary and bowel control
3. Erectile function saved
I got them all, eventually. And still improving 2 years 4 months on.
Think about what you would want, to be able to say to yourself later, "it was right for me". No point regretting, no point moaning, this is all negative. What ever you opt for just get on and deal with it.
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
"Decent sex life?" - Yep!
"Erections can be restored with pumps, pills and injections. Is this really true?" - Yep (in the vast majority of cases so I believe)
Recovery though is dependent on a range of things e.g. the sparing of one / both nerve bundles, your age, how good your erections are now, pre-surgery. It can also take quite a time (up to two years).
Hopefully post treatment you'll be put in touch with the local erectile rehabilitation team who will be able to help.
Flexi
User
Originally Posted by: Online Community MemberThanks Chris,
I'd be interested in what this stalwart has to say. I know there are no guarantees. My choice presently is prostatectomy or HIFU. My information is that HIFU is more risky.
Any comments welcome.
John
Search on members list for LynEyre, or go to http://community.prostatecanceruk.org/members?g=members&letter=L
For discussion on treatment options you would need to read threads by people who have joined the site without having made a decision as to treatment and are asking about or discussing options. ChrisJ is a recent joiner, there will be others.
Your mate may say you are "mad to opt for surgery"? But, it is not his cancer, it is yours alone. Whatever you decide to do, it is you that will deal with the consequences, not him. Hopefully you will have to deal with the consequences or side effects, including life, for many years to come. My view is that anyone should present you with the facts about their situation and the outcomes for them, but should not tell you or persuade you what to do. You should decide what treatment you want or do not want on what you have read, been told and researched, your family longevity, and then feel comfortable with.
atb
dave
Edited by member 28 Jul 2015 at 09:19
| 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. |
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User
"Decent sex life?" - Yep!
"Erections can be restored with pumps, pills and injections. Is this really true?" - Yep (in the vast majority of cases so I believe)
Recovery though is dependent on a range of things e.g. the sparing of one / both nerve bundles, your age, how good your erections are now, pre-surgery. It can also take quite a time (up to two years).
Hopefully post treatment you'll be put in touch with the local erectile rehabilitation team who will be able to help.
Flexi
User
Stay Calm And Carry On. |
User
J
Decent sex life ? Sometimes out of this world, always fun, you can both get complete satisfaction without an erection or aids. It can be a long road to recovery some have been lucky and regained erections quite quickly, I have just started on muse with excellent results. Search for a conversation "a wife's story of ED" plenty of info on treatments.
Thanks Chris
User
Thanks for your replies everyone. I have been reading your own stories and am impressed by what I read. Good news for all of you.
You confirm what I had previously thought but am a little confused because a mate has been telling me about his HIFU five years ago which passed with virtually no side effects and he says I would be mad to elect for surgery.
I'm not convinced by him as I believe that surgery provides a more final solution to the cancer so I would rather put up with the side effects than spend the rest of my life worrying about cancer coming back.
I am on the way to see a HIFU specialist now so hoping for some clarity.
I am 59, by the way, with slightly younger sexy wife who is supportive and up for any challenge.
User
Hi Johnny , im 6 weeks post surgery and desperately didn't want to have it done re the side-effects , but to be fair now ive had it done im just kind of getting on with it . Im virtually dry continence-wise which is amazing . No erections and im not expecting any for a good while tbh . My wife and I are both 48 , and when we get the time ( school holidays ) im sure our sexlife will get back on track without an erection . I will soon be getting to see the ED nurse and will be pushing hard for injections or Muse to virtually guarantee an erection when I need it . Either that or I will see a consultant privately . My surgeon promised that one way or another I would be able to achieve erections good enough for sex .
Chris
User
Thanks for your replies everyone. I have been reading your own stories and am impressed by what I read. Good news for all of you.
You confirm what I had previously thought but am a little confused because a mate has been telling me about his HIFU five years ago which passed with virtually no side effects and he says I would be mad to elect for surgery.
I'm not convinced by him as I believe that surgery provides a more final solution to the cancer so I would rather put up with the side effects than spend the rest of my life worrying about cancer coming back.
I am on the way to see a HIFU specialist now so hoping for some clarity.
I am 59, by the way, with slightly younger sexy wife who is supportive and up for any challenge.
User
J
it would appear one of our stalwarts is on holiday who would no doubt take you to task over the statement " I believe that surgery provides a more final solution to the cancer"
I think it is fair to say no treatment has guarantees, and many guys still to have RT after surgery.
My aim is to emulate several guys I met who are between 7 and 14 years post op with no other intervention.
I had surgery and am still happy with that choice despite an on going stricture problem , life is almost back to normal.
I also have a younger wife who I adore and she has been a rock.
All the best with your choices.
Thanks Chris
X
User
Thanks Chris,
I'd be interested in what this stalwart has to say. I know there are no guarantees. My choice presently is prostatectomy or HIFU. My information is that HIFU is more risky.
Any comments welcome.
John
User
Originally Posted by: Online Community MemberThanks Chris,
I'd be interested in what this stalwart has to say. I know there are no guarantees. My choice presently is prostatectomy or HIFU. My information is that HIFU is more risky.
Any comments welcome.
John
Search on members list for LynEyre, or go to http://community.prostatecanceruk.org/members?g=members&letter=L
For discussion on treatment options you would need to read threads by people who have joined the site without having made a decision as to treatment and are asking about or discussing options. ChrisJ is a recent joiner, there will be others.
Your mate may say you are "mad to opt for surgery"? But, it is not his cancer, it is yours alone. Whatever you decide to do, it is you that will deal with the consequences, not him. Hopefully you will have to deal with the consequences or side effects, including life, for many years to come. My view is that anyone should present you with the facts about their situation and the outcomes for them, but should not tell you or persuade you what to do. You should decide what treatment you want or do not want on what you have read, been told and researched, your family longevity, and then feel comfortable with.
atb
dave
Edited by member 28 Jul 2015 at 09:19
| 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
Thanks Dave
I will look up those threads. Quite agree it's my decision and I am more inclined to follow professionals' advice than amateur mates! But it's unsettling to get conflicting advice from the professionals.
Cheers
John
User
Welcome to the real world.
You just have to go with info given and decide.
I think with hindsight we would have done it differently .☺
User
Thanks, Hilary. What would you have done differently?
User
The Hifu wasnt mentioned and was in its infancy but with all the problems Sean has with incontinence (having tests soon for maybe op)he may have opted for brachytherapy,or whatever radiotherapy they considered. However that does cause ed,so maybe not as ed isn't one of our problems.😊
User
John,
You are probably at the most frustrating and infuriating part of your particular PCa experience. As far as I am aware there is still no one best option to deal with PCa? So, you have HIFU, Brachytherapy, open surgery, Robotic assisted surgery, External beam therapy, Radiation, Hormone. Are there more? Probably.
Various opinions and views - confusion.
Some people will suggest that if you or for radiation treatment as your first or preferred option, then you may not be able to have any surgery later as the radiation turns the prostate to mush and it is then too difficult to remove. Some people will say that in some cases this is not the case and you could have radiation treatment and you may if you need it later and ask for it, find a surgeon who will operate.
The side effects of radiation hormone, seed (Brachy) I do it not know enough about, I had the Robot. Not saying you should.
Potential side effects of the robot explained to me were ED, urinary incontinence, bowel incontinence, both, and as I was in the prep room it was also pointed out to me that a very small percentage of patients die on the table. Nobody said that my penis would probably end up shorter, by maybe up to an inch due to the length of urethra removed when they cut out the prostate.
No medical professional I met with advised me to go with them, they only offered there specialism, and then suggested I speak to others before making my final choice. Although after I had the surgery, several medical professionals said that they would have opted for my choice if they had been me. Maybe they were being tactful?
You are where so many of us were, decision time where no one treatment seems to be the best or guarantees success.
And as for potential side effects, remember they are all ONLY POTENTIAL., including LIFE. Many men have none , many have some over the long or short term. Fitness and age seem to be a factor, and also the skill of the surgeon, and to a degree luck.
For those who have had side effects that make them rue there initial treatment decision, this is of little use to you. They are them, and although we all have the same bits and may have had similar or the same surgical procedure, the result is not guaranteed, and no way of knowing the side effects.
In may case I read a lot, asked a lot, and opted for the best choice for me, in short I wanted it out as soon as possible. The idea of leaving a cancerous lump in me, no. I could not entertain this option at all. For me surgery was the only option. In my view I was treating the cancer and my whole being head and heart.
At prep and meeting the surgeon I was very clear to him, take it out, and, told him that if you are at all concerned take whatever else out you think you need to. I told him that I did not want him apologising to me a year later when telling me that I had a recurrence because he had tried to do me a favour and left some bits in.
My priority wish list was
1. Life
2. Urinary and bowel control
3. Erectile function saved
I got them all, eventually. And still improving 2 years 4 months on.
Think about what you would want, to be able to say to yourself later, "it was right for me". No point regretting, no point moaning, this is all negative. What ever you opt for just get on and deal with it.
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
User
Originally Posted by: Online Community MemberJohn,
You are probably at the most frustrating and infuriating part of your particular PCa experience. As far as I am aware there is still no one best option to deal with PCa? So, you have HIFU, Brachytherapy, open surgery, Robotic assisted surgery, External beam therapy, Radiation, Hormone. Are there more? Probably.
Various opinions and views - confusion.
Some people will suggest that if you or for radiation treatment as your first or preferred option, then you may not be able to have any surgery later as the radiation turns the prostate to mush and it is then too difficult to remove. Some people will say that in some cases this is not the case and you could have radiation treatment and you may if you need it later and ask for it, find a surgeon who will operate.
The side effects of radiation hormone, seed (Brachy) I do it not know enough about, I had the Robot. Not saying you should.
Potential side effects of the robot explained to me were ED, urinary incontinence, bowel incontinence, both, and as I was in the prep room it was also pointed out to me that a very small percentage of patients die on the table. Nobody said that my penis would probably end up shorter, by maybe up to an inch due to the length of urethra removed when they cut out the prostate.
No medical professional I met with advised me to go with them, they only offered there specialism, and then suggested I speak to others before making my final choice. Although after I had the surgery, several medical professionals said that they would have opted for my choice if they had been me. Maybe they were being tactful?
You are where so many of us were, decision time where no one treatment seems to be the best or guarantees success.
And as for potential side effects, remember they are all ONLY POTENTIAL., including LIFE. Many men have none , many have some over the long or short term. Fitness and age seem to be a factor, and also the skill of the surgeon, and to a degree luck.
For those who have had side effects that make them rue there initial treatment decision, this is of little use to you. They are them, and although we all have the same bits and may have had similar or the same surgical procedure, the result is not guaranteed, and no way of knowing the side effects.
In may case I read a lot, asked a lot, and opted for the best choice for me, in short I wanted it out as soon as possible. The idea of leaving a cancerous lump in me, no. I could not entertain this option at all. For me surgery was the only option. In my view I was treating the cancer and my whole being head and heart.
At prep and meeting the surgeon I was very clear to him, take it out, and, told him that if you are at all concerned take whatever else out you think you need to. I told him that I did not want him apologising to me a year later when telling me that I had a recurrence because he had tried to do me a favour and left some bits in.
My priority wish list was
1. Life
2. Urinary and bowel control
3. Erectile function saved
I got them all, eventually. And still improving 2 years 4 months on.
Think about what you would want, to be able to say to yourself later, "it was right for me". No point regretting, no point moaning, this is all negative. What ever you opt for just get on and deal with it.
atb
dave
Good post and good advice Dave!
User
I would concur with most people's comments on here. Fun can be had after an RP but how well you recover erections will to a certain extent, depend on whether you have both or just one side of nerve bundles removed. As a former Gleason 7 and who has had all treatments except chemo, I can say that there is always a sex life after surgery though for many, a new type of sex life. If life and love are more important (and losing your life is the alternative to doing nothing about any cancer), then you will find that town I talk about called Acceptance and be happy that you are alive to enjoy each day. If you have a good woman who stands by you, your love will overcome any obstacles. I wish you luck brother.
Bazza
User
I had old fashion surgery on Feb 11th and there is no sign of an erection but if it no sex or no cancer I would take no sex. You can show your partner other sexually attention such as oral etc.
I am sure if she is like my wife she rather have me sharing her bed than being alone. Sex is a part of showing love not the only way.
User
Great post Dave, it really helped me crystallise my thoughts around the subject and I totally agree with the priority list you noted...waiting to see the oncologist on the 24th, going to seem like an eternity though...
User
Yes it will.I have found that everything is hurry up and wait!
User
Chris J, don't set yourself up too much just in case it is a disappointment. Caverject and Muse work for about half of men that need them, and they tend to be the ones for whom Viagra and Cialis didn't work either.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberJ
it would appear one of our stalwarts is on holiday who would no doubt take you to task over the statement "I believe that surgery provides a more final solution to the cancer"
I think it is fair to say no treatment has guarantees, and many guys still to have RT after surgery.
My aim is to emulate several guys I met who are between 7 and 14 years post op with no other intervention.
I had surgery and am still happy with that choice despite an on going stricture problem , life is almost back to normal.
I also have a younger wifewho I adore andshe has been a rock.
All the best with your choices.
Thanks Chris"
X
Quite right. There is insufficient data yet to understand the long term effects of HIFU but what we do know is that surgery is likely to cause ED straight after the op which may often improve as the months turn into a year or 2 or 3. RT and brachy also cause ED but often this does not develop until 5 years or more after the treatment was finished. In terms of the important side effect (remission or 'cure') the stats from a huge European research project show that all other things being equal RT and surgery have exactly the same success rate. Again, HIFU is too new for any statistically significant evidence for 10 or 15 year outcomes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Johnny, this is the conversation mentioned by the guys above
http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001
Edited by member 05 Aug 2015 at 02:12
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|