Prostate cancer
Discussion
Damp Logs said:
BoomerPride said:
You're in a very similar situation to mine back in August last year. My bone scan was clear. Prostate cancer progression is slow so hopefully you have caught it early.
I found the process of hormone injections and radiotherapy tolerable with no significant side effects. Though I find it difficult to keep my weight down due to the injections.
Just guessing from your user name, are you being looked after by Bangor hospital?
If it’s anything like my experience at Bangor, I’d be looking for a second opinion…..I found the process of hormone injections and radiotherapy tolerable with no significant side effects. Though I find it difficult to keep my weight down due to the injections.
Just guessing from your user name, are you being looked after by Bangor hospital?
Damp Logs can you expand on the issues with Bangor please.
Penrhyn said:
BoomerPride yes you are correct l saw Linda Fon Williams , she was great to deal with.
Damp Logs can you expand on the issues with Bangor please.
Tried to send a PMDamp Logs can you expand on the issues with Bangor please.
Consultant was not interested in offering anything other than removal or radiotherapy, wasn’t aware of focal therapies(actually said one didn’t exist), and denied them being available on nhs. The nurse had to refer to a note on the wall next to his desk for details of one. After I chose to investigate these, there was little or no contact.
I was/am very lucky and got referred to UCLH, and then received cryotherapy.
Dealing with Betsi Cadwallader is a complete nightmare anyway.
Good luck with it all, and fight for what you want rather than them tell you
Anything else, let me know
Penrhyn said:
Turned up at Urology to see a specialist nurse.
I have Prostate Cancer 4.3 , she is arranging a bone scan.
I have a list of options to consider assuming nothing nasty found in the bone scan. Looks like Radiotherapy and Hormone injections is top of their list.
I was diagnosed with stage 4 prostate cancer. Bones scan clear. Radiotherapy combined with hormones/drugs was the only option for me. I have Prostate Cancer 4.3 , she is arranging a bone scan.
I have a list of options to consider assuming nothing nasty found in the bone scan. Looks like Radiotherapy and Hormone injections is top of their list.
I'm happy with that.
Radiotherapy is no joke but is perfectly doable. Allow about 6 weeks after radiotherapy to recover.
Hormones have some side-effects - zeroing your testosterone means you have less drive/energy and kills your libido. I have to take low dose steroids too.
Result is I feel pretty normal. I'd say 95% of where I was before and much better quality of life - more bladder control.
Get yourself fit before you start and drop weight, as keeping it off is a challenge. You'll have to work hard to keep the weight off afterwards too. I'm in the gym at least 3x per week and walk 6k every day.
Happy to chat offline if you want a blow by blow. Just PM me.
The whole purpose of this thread is to help those who may have or do have prostate cancer. To this end I and many, many others have posted as much help and advice as possible to help those starting out on this road. We have all openly and clearly said which treatment we have had and the various side effects that might develop.
I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
Viper201 said:
The whole purpose of this thread is to help those who may have or do have prostate cancer. To this end I and many, many others have posted as much help and advice as possible to help those starting out on this road. We have all openly and clearly said which treatment we have had and the various side effects that might develop.
I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
I don’t think there’s any intention of being dishonest or secretive with the use of a private message. It does open an option of an actual conversation, by phone or even face to face between people.I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
I’m happy to outline my experience on here, and indeed this forum has helped me, but I’ve also spoken to several guys not on PH(how can this be possible??) who have been put in touch with me by friends and even a GP.
I have previously posted on here about my experience.
I do understand your comments.
Mike
Viper201 said:
The whole purpose of this thread is to help those who may have or do have prostate cancer. To this end I and many, many others have posted as much help and advice as possible to help those starting out on this road. We have all openly and clearly said which treatment we have had and the various side effects that might develop.
I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
I have already documented my diagnosis, treatment and side effects in this thread in minute detail. Feel free to go back and read those contributions at your leisure. I thought I would just be adding repetition to what I'd already written. I was, i thought, offering a new contributor who might need some support a friendly ear if they wanted to vent. I hadn't realised that this would cause you offence. I'm not sure, even now, why it would.I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
AstonZagato said:
Viper201 said:
The whole purpose of this thread is to help those who may have or do have prostate cancer. To this end I and many, many others have posted as much help and advice as possible to help those starting out on this road. We have all openly and clearly said which treatment we have had and the various side effects that might develop.
I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
I have already documented my diagnosis, treatment and side effects in this thread in minute detail. Feel free to go back and read those contributions at your leisure. I thought I would just be adding repetition to what I'd already written. I was, i thought, offering a new contributor who might need some support a friendly ear if they wanted to vent. I hadn't realised that this would cause you offence. I'm not sure, even now, why it would.I find it very disheartening that we are resorting to Private Messages which help no one. The advice given may well correlate to the questioner but as we all know very well, everyone is different and will react differently to the various treatments.
If this thread is to continue helping others then it needs to be done in an open and honest way. A new member of this club will not get any benefit or helpful advice if we go down the PM route. I fully understand there are potentially embarrassing aspects but in order to beat this disease, we should be frank and open. Thank you!
I had a phone chat with Penrhyn (just under an hour), which I hope was useful, and would have been impossible to have on here.
As I said to him, I was very lucky to be put in contact with a couple of guys(ironically both in motor trade) who not only gave great advice when I was at an early stage, but also made me realise that we have to make our own decisions about treatment options and not be pushed down a road by nhs consultants.
I feel extremely lucky, and feel I owe it to anyone on this road to share what little support and encouragement I can, as I think we all do.
Damp Logs said:
Very well put AZ, but don’t think Viper was offended, perhaps just wanting to avoid what I’ve seen happen on other forums(certainly not PH).
I had a phone chat with Penrhyn (just under an hour), which I hope was useful, and would have been impossible to have on here.
As I said to him, I was very lucky to be put in contact with a couple of guys(ironically both in motor trade) who not only gave great advice when I was at an early stage, but also made me realise that we have to make our own decisions about treatment options and not be pushed down a road by nhs consultants.
I feel extremely lucky, and feel I owe it to anyone on this road to share what little support and encouragement I can, as I think we all do.
Correct! I was not offended at all as I said disheartening. I had a phone chat with Penrhyn (just under an hour), which I hope was useful, and would have been impossible to have on here.
As I said to him, I was very lucky to be put in contact with a couple of guys(ironically both in motor trade) who not only gave great advice when I was at an early stage, but also made me realise that we have to make our own decisions about treatment options and not be pushed down a road by nhs consultants.
I feel extremely lucky, and feel I owe it to anyone on this road to share what little support and encouragement I can, as I think we all do.
The second part I've highlighted in your post is really important. You always have a second opinion option so any concerns, then use it.
Prostate Cancer UK and Macmillan are good sources of info and help.
Little update, I had a second procedure yesterday with an effort to stop bleeding following my RT treatment. Unfortunately it didn’t go as well as hoped for and I’m advised no more procedures I will have to live with the bleeding. My bladder wall is very thin and fragile which is why no more procedures.
I’m advised a new drug is now available to help my condition and I need to consult with my GP to be prescribed this. Alternative is using bloody enema’s routinely
Other Chaps I know, including in here, have had no such problems, just unlucky I guess.
Consultant told me If I have further significant bleeds to get myself into A&E, so washing their hands of me now.
I’m advised a new drug is now available to help my condition and I need to consult with my GP to be prescribed this. Alternative is using bloody enema’s routinely
Other Chaps I know, including in here, have had no such problems, just unlucky I guess.
Consultant told me If I have further significant bleeds to get myself into A&E, so washing their hands of me now.
Crikey Cranked, you are bloody unlucky. Has anyone mentioned this procedure for your condition - Neobladder Reconstruction? Probably not something you may want to do but a lifetime of enemas... 
https://www.mayoclinic.org/tests-procedures/neobla...
https://www.mayoclinic.org/tests-procedures/neobla...
Apologies, I have more-read my Sigmoidoscopy report following the weeks treatment.
Enema to see if it will reduce the bleed for further therapy and then consider Purastat therapy if bleeding remains significant. Doc’ was referring to lower rectum bleeding not as I said earlier bladder.
Purastat therapy sounds like my way forward.
Enema to see if it will reduce the bleed for further therapy and then consider Purastat therapy if bleeding remains significant. Doc’ was referring to lower rectum bleeding not as I said earlier bladder.
Purastat therapy sounds like my way forward.
Edited by crankedup5 on Tuesday 13th August 15:28
Best of luck to everyone who’s going through treatment , but I can honestly say as someone who is active surveillance ( watch & wait ) I’m having nightmares reading some of the treatments , I didn’t cope at all with the 1 st biopsy while awake , told anymore from you & we will take you down the theatre & put you asleep !!( my wife works at hospital & had pre- warned them I’d be a nightmare ) .
Credit to you all , I know you have to have the treatment but your hell of a lot braver that me , all the best .
Credit to you all , I know you have to have the treatment but your hell of a lot braver that me , all the best .
Gas1883 said:
Best of luck to everyone who’s going through treatment , but I can honestly say as someone who is active surveillance ( watch & wait ) I’m having nightmares reading some of the treatments , I didn’t cope at all with the 1 st biopsy while awake , told anymore from you & we will take you down the theatre & put you asleep !!( my wife works at hospital & had pre- warned them I’d be a nightmare ) .
Credit to you all , I know you have to have the treatment but your hell of a lot braver that me , all the best .
TBH always I have found the wait to be the hardest part of treatments. As soon as you are being examined or treatment application the medical team always ensure any pain is dealt with by sedatives etc. Good luck with. journey and keep posted if you wish.Credit to you all , I know you have to have the treatment but your hell of a lot braver that me , all the best .
crankedup5 said:
Gas1883 said:
Best of luck to everyone who’s going through treatment , but I can honestly say as someone who is active surveillance ( watch & wait ) I’m having nightmares reading some of the treatments , I didn’t cope at all with the 1 st biopsy while awake , told anymore from you & we will take you down the theatre & put you asleep !!( my wife works at hospital & had pre- warned them I’d be a nightmare ) .
Credit to you all , I know you have to have the treatment but your hell of a lot braver that me , all the best .
TBH always I have found the wait to be the hardest part of treatments. As soon as you are being examined or treatment application the medical team always ensure any pain is dealt with by sedatives etc. Good luck with. journey and keep posted if you wish.Credit to you all , I know you have to have the treatment but your hell of a lot braver that me , all the best .
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