Prostate cancer
Discussion
52classic said:
Just 'checking in.' Now 5 months in since discontinuing my principal drug Enzalutamide (on Consultant's instruction).
PSA holding at zero! Staying on Tamsilosin though, probably indefinitely. I am told that it may take up to a year for the effects of the drug to go completely but my energy levels are already improving. The whole process of 'getting back to normal' is quite enjoyable.
I am an avid follower of this thread and seeing people share experiences at all levels I find to be useful and reassuring, therefore I'm against splitting the thread for that reason.
Viper - Thank you for your wise words from time to time. I was devastated top hear about your problems with NHS. A load of grief you don't need at a difficult time.
Crankedup - Where are you? I think we started on here at around the same time and I'd love to hear how you're doing.
Yes, where is Crankedup? Let us know how you are doing. PSA holding at zero! Staying on Tamsilosin though, probably indefinitely. I am told that it may take up to a year for the effects of the drug to go completely but my energy levels are already improving. The whole process of 'getting back to normal' is quite enjoyable.
I am an avid follower of this thread and seeing people share experiences at all levels I find to be useful and reassuring, therefore I'm against splitting the thread for that reason.
Viper - Thank you for your wise words from time to time. I was devastated top hear about your problems with NHS. A load of grief you don't need at a difficult time.
Crankedup - Where are you? I think we started on here at around the same time and I'd love to hear how you're doing.
The Yorkshire and Harrogate Cancer Alliance keep asking me to be a champion of their cause but after more horrendous stuff from the NHS here I've declined. This time its the mother-in-law. 10 years ago she went to her GP with bad acid reflux and heartburn. She kept going back and back and back but got nowhere. So after pestering the practice for 10 years she got very much worse and was finally sent for a scan. She was diagnosed with stage 2 esophageal cancer and is now in the middle of radiotherapy and some very bad chemo. The consultant at Leeds wanted to know why she had not been diagnosed 10 years ago as the main causes are smoking (non smoker), alcohol (teetotal) and chronic heartburn and acid reflux.
The Gauge said:
What are the options available for treatment of an enlarged prostate?
Thanks to my enlarged prostate my bladder is gradually getting worse in that I'm now waking up between 4am-5am to pee, and I can never get back to sleep again so i'm often tired during the day. Needing to pee more often through the day too. Got another PSA test in a few days (had lone last year with MRI & biopsy but thankfully all clear).
I'm hoping for another high PSA result to trigger another appointment with Urology Dept and MRI so I can discuss it further with them.
A lot will depend on how enlarged yours is. Meds are the first point of call but depending on your age and lifestyle the side effects may not be ideal.Thanks to my enlarged prostate my bladder is gradually getting worse in that I'm now waking up between 4am-5am to pee, and I can never get back to sleep again so i'm often tired during the day. Needing to pee more often through the day too. Got another PSA test in a few days (had lone last year with MRI & biopsy but thankfully all clear).
I'm hoping for another high PSA result to trigger another appointment with Urology Dept and MRI so I can discuss it further with them.
I'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
westberks said:
A lot will depend on how enlarged yours is. Meds are the first point of call but depending on your age and lifestyle the side effects may not be ideal.
I'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
Thank you. I'm 52 so would meds be the normal course of action or would they be just for older men?I'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
Good look with your PAE surgery, from what I have just read the recovery time is very quick.
the-photographer said:
Thanks for the link, very informative.westberks said:
A lot will depend on how enlarged yours is. Meds are the first point of call but depending on your age and lifestyle the side effects may not be ideal.
I'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
Your local NHS trust should be able to refer you to another hospital that does offer aquablation etc.I'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
I’m in wales and was treated at UCLH with cryotherapy
Damp Logs said:
westberks said:
A lot will depend on how enlarged yours is. Meds are the first point of call but depending on your age and lifestyle the side effects may not be ideal.
I'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
true, i've been moved from Wilts to berks; but then its the time factor and how long the refereal takesI'm having PAE surgery next week; this is primarily a starting point as my prostate is ridiculously enlarged and they are doing this to initially get it down to a HOLEP size.
I'm 56, so the ongoing 'function' is very still very important; if i was 76 I'd probably just have it removed and be done with it!
the Brochure linked above is very good, but the treatment options depend on what your local health trust offer. I was quite keen on the aquablation or vapour options, but neither are offered and i'd need to private for that.
I've had a good experience overall with the NHS despite some early hiccups; the current process of going for surgery after 8 years of monitoring has been handled very well.
Your local NHS trust should be able to refer you to another hospital that does offer aquablation etc.
I’m in wales and was treated at UCLH with cryotherapy
The Gauge said:
Thank you. I'm 52 so would meds be the normal course of action or would they be just for older men?
Good look with your PAE surgery, from what I have just read the recovery time is very quick.
meds to start usually; but ED & moobs weren't part of my newly single at 48 plan; so i didn't bother!Good look with your PAE surgery, from what I have just read the recovery time is very quick.
just get fully tested and advised by GP and read up so you can ask the questions and not be fobbed off
westberks said:
mark387mw said:
I’ve been reading up on PAE as that’s the likely future for me.
Urologist said my prostate is ‘humongous’ explaining the high PSA. Too big for most options so I think PAE will be inevitable when it’s time. I have an appointment next week to discuss my IPSS and other symptoms.
I understand the method of PAE but once the blood is cut off, how far does it shrink/die?
I visualise a dead prostate hanging around the base of my bladder!
I'm also in team 'humungous'. I've been referred from my local major hospital to a adjoining trust with better facilities for Holep; they immediately passed me onto the department that do the PAE.Urologist said my prostate is ‘humongous’ explaining the high PSA. Too big for most options so I think PAE will be inevitable when it’s time. I have an appointment next week to discuss my IPSS and other symptoms.
I understand the method of PAE but once the blood is cut off, how far does it shrink/die?
I visualise a dead prostate hanging around the base of my bladder!
I'm then going to have a follow up MRI a few months later to measure the reduction and then maybe holep the rest of it. Hopefully will find out the extent they expect it to reduce but i think it depends on the individual reaction; hopefully a lot!
Prostate is 10 times bigger than it should be and says HoLEP is the gold standard.
That’s me on the journey now. An upside will be coming off the tamsulosin.
omniflow said:
Not sure if this has been mentioned before, but is it worth splitting this thread into 2. People who have, or think they might have Prostate Cancer in one thread, and then people who don't have cancer but have prostate issues in the other thread. Personally, I'm in the 2nd bucket, and am quite happy to read about everything prostate related, but I was thinking that people who have the worst of problems possibly don't want to read about people who have relatively minor issues.
There have been other threads but usually short lived. This one seems more thorough for either camp. Two other threads on the subject:
https://www.pistonheads.com/gassing/topic.asp?h=0&...
https://www.pistonheads.com/gassing/topic.asp?h=0&...
mark387mw said:
Having had the consultation with the urologist today, he wants to book me in for HoLEP in September. I’m in New Zealand and he says PAE not an option here.
Prostate is 10 times bigger than it should be and says HoLEP is the gold standard.
That’s me on the journey now. An upside will be coming off the tamsulosin.
I'm having the PAE as a prelim prior to holep once the prostate has reduced. They prefer to do the holep up to 180cc with my consultant and I'm around 230cc.Prostate is 10 times bigger than it should be and says HoLEP is the gold standard.
That’s me on the journey now. An upside will be coming off the tamsulosin.
a week today and counting.......
Viper201 said:
52classic said:
Just 'checking in.' Now 5 months in since discontinuing my principal drug Enzalutamide (on Consultant's instruction).
PSA holding at zero! Staying on Tamsilosin though, probably indefinitely. I am told that it may take up to a year for the effects of the drug to go completely but my energy levels are already improving. The whole process of 'getting back to normal' is quite enjoyable.
I am an avid follower of this thread and seeing people share experiences at all levels I find to be useful and reassuring, therefore I'm against splitting the thread for that reason.
Viper - Thank you for your wise words from time to time. I was devastated top hear about your problems with NHS. A load of grief you don't need at a difficult time.
Crankedup - Where are you? I think we started on here at around the same time and I'd love to hear how you're doing.
Yes, where is Crankedup? Let us know how you are doing. PSA holding at zero! Staying on Tamsilosin though, probably indefinitely. I am told that it may take up to a year for the effects of the drug to go completely but my energy levels are already improving. The whole process of 'getting back to normal' is quite enjoyable.
I am an avid follower of this thread and seeing people share experiences at all levels I find to be useful and reassuring, therefore I'm against splitting the thread for that reason.
Viper - Thank you for your wise words from time to time. I was devastated top hear about your problems with NHS. A load of grief you don't need at a difficult time.
Crankedup - Where are you? I think we started on here at around the same time and I'd love to hear how you're doing.
The Yorkshire and Harrogate Cancer Alliance keep asking me to be a champion of their cause but after more horrendous stuff from the NHS here I've declined. This time its the mother-in-law. 10 years ago she went to her GP with bad acid reflux and heartburn. She kept going back and back and back but got nowhere. So after pestering the practice for 10 years she got very much worse and was finally sent for a scan. She was diagnosed with stage 2 esophageal cancer and is now in the middle of radiotherapy and some very bad chemo. The consultant at Leeds wanted to know why she had not been diagnosed 10 years ago as the main causes are smoking (non smoker), alcohol (teetotal) and chronic heartburn and acid reflux.
Some really quite horrible stories in here and really sorry to hear, that’s a terrible situation regarding your Mother in Laws diagnosis failure. Of course wish for a good outcome.
My current situation is that I await a second procedure to help control the post radio therapy proctitis. I lost so much blood prior to first procedure, doctors said inially I would have to live with it as no treatment available (fibs) I ended up in hospital several occasions for blood and iron transfusions to get me back on feet. I thought I was a goner at one stage as did my son. I hope that I am over the worst now but I am a different body compared to 2020 just before I became poorly.
Wish as always good recoveries and outcomes to all
crankedup5 said:
Sorry for absence chaps, got a bit waylaid.
Some really quite horrible stories in here and really sorry to hear, that’s a terrible situation regarding your Mother in Laws diagnosis failure. Of course wish for a good outcome.
My current situation is that I await a second procedure to help control the post radio therapy proctitis. I lost so much blood prior to first procedure, doctors said inially I would have to live with it as no treatment available (fibs) I ended up in hospital several occasions for blood and iron transfusions to get me back on feet. I thought I was a goner at one stage as did my son. I hope that I am over the worst now but I am a different body compared to 2020 just before I became poorly.
Wish as always good recoveries and outcomes to all
crikey, hopefully over the worst of it and the second op is successful. you've been through it!Some really quite horrible stories in here and really sorry to hear, that’s a terrible situation regarding your Mother in Laws diagnosis failure. Of course wish for a good outcome.
My current situation is that I await a second procedure to help control the post radio therapy proctitis. I lost so much blood prior to first procedure, doctors said inially I would have to live with it as no treatment available (fibs) I ended up in hospital several occasions for blood and iron transfusions to get me back on feet. I thought I was a goner at one stage as did my son. I hope that I am over the worst now but I am a different body compared to 2020 just before I became poorly.
Wish as always good recoveries and outcomes to all
Good luck with the next stage Crankedup. I can't believe you are still suffering with proctitis. I only had it during the radiotherapy and some magic cream sorted it out.
As you know, the treatment damages the digestive system and it is very susceptible to radiotherapy as the beams pass through your body. I bet they didn't tell you that at the start!!!
As you know, the treatment damages the digestive system and it is very susceptible to radiotherapy as the beams pass through your body. I bet they didn't tell you that at the start!!!
I had "gel separation' to avoid proctitis. A gel polymer was injected in my 'taint' to force the rectum away from the prostate so they could keep the radiation away from the rectum as much as possible. It was a little like having a biopsy - feet in stirrups, lose all dignity, local anaesthetic, disturbingly long needle, some mild discomfort and done. Whilst in the latter stages of radiotherapy I noticed more frequent and looser bowel movements, it was pretty mild.
This was done on private medical insurance. I'm not sure the NHS offer it.
This was done on private medical insurance. I'm not sure the NHS offer it.
Without getting into too much detail I have made an investment into Andrew the toilet tissue manufacturer 
Still the problem continues, I had some ‘welding’ done accessing the damaged areas via you know where. Reading of people’s experiences in here with very similar conditions and the treatments offered, I am less enamoured now with the Trust that are looking after me. My second procedure I was advised ‘I shouldn’t have to wait to long’. Five months and counting. Should have kept my private health care insurance going! Having said that I have tremendous respect and thanks to Addenbrookes who administered the R.T.
Still the problem continues, I had some ‘welding’ done accessing the damaged areas via you know where. Reading of people’s experiences in here with very similar conditions and the treatments offered, I am less enamoured now with the Trust that are looking after me. My second procedure I was advised ‘I shouldn’t have to wait to long’. Five months and counting. Should have kept my private health care insurance going! Having said that I have tremendous respect and thanks to Addenbrookes who administered the R.T.
AstonZagato said:
I had "gel separation' to avoid proctitis. A gel polymer was injected in my 'taint' to force the rectum away from the prostate so they could keep the radiation away from the rectum as much as possible. It was a little like having a biopsy - feet in stirrups, lose all dignity, local anaesthetic, disturbingly long needle, some mild discomfort and done. Whilst in the latter stages of radiotherapy I noticed more frequent and looser bowel movements, it was pretty mild.
This was done on private medical insurance. I'm not sure the NHS offer it.
Crikey that sounds a luxury option to have been offered, I wish I had know of it before my R.T. Would have been pleased to open the wallet if it was not on service menu of NHS. Instead I’ve had three years of misery, embarrassment and more NHS appointments with further procedures, stays in hospital and points of collapse. But I’m still here moaning This was done on private medical insurance. I'm not sure the NHS offer it.
I think that all of us in here can concur the loss of dignity aspects.
I feel for those of you going through your troubles and wish you all well.
Someone I know of has been diagnosed with prostate cancer, picked up by chance during tests for other matters, he has it in his lymph nodes too and is waiting for an op where they open him up to remove the prostate and hopefully all the cancer.
Anyone know much about this, and what the chances of success are? Hopefully high?
Someone I know of has been diagnosed with prostate cancer, picked up by chance during tests for other matters, he has it in his lymph nodes too and is waiting for an op where they open him up to remove the prostate and hopefully all the cancer.
Anyone know much about this, and what the chances of success are? Hopefully high?
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