I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

I’ve just been diagnosed

Email this conversation Print this conversation
User
Posted 17 Dec 2022 at 20:39

Can someone help?just diagnosed on Thursday. Gleason score of 7 and 9 in some areas? PSA of 15.

I’ve been offered either a drastic prosectomy via some robot method or hormone therapy for 2 years with radiotherapy?

I’ve got so many questions- can somebody advice? Terrified of the side effects in each option.

User
Posted 18 Dec 2022 at 00:28

Geoff, you'll be surprised at how quickly you get over this initial shock, especially if you read a few posts on this forum and realise that prostate cancer is quite normal and is just a result of growing old. 

Yes now you have to do some investigation, decide your priorities in life, and then choose a treatment which hopefully won't do much harm. 

Dave

User
Posted 18 Dec 2022 at 06:57
Try not to get too stressed about it: prostate cancer is basically a matter of being a man and living long enough and, when caught at any early stage (as yours has been) is an eminently treatable condition.

As you rightly surmise, both surgery and radiotherapy have side-effects. Basically a question of whether you prefer to get it over with quickly via surgery or slowly and more gently via RT. RT was (for various reasons) strongly recommended in my case; I found it all entirely bearable and I'd be happy to answer any questions you have about it.

Best wishes,

Chris

User
Posted 18 Dec 2022 at 07:16
The other factor apart from choice of preferred side effects is your attitude to the risk associated with still having a prostate if you take the RT option.

Having it removed means that particular part of your anatomy is never going to cause issues again and the cancer is guaranteed not to come back in your prostate.

Educate yourself about the latest research on RP v RT for your particular staging and make an informed decision.

Try not to look at old case statistics as both RT and RP have reduced their side effect profile in recent years.

User
Posted 18 Dec 2022 at 07:22
Hi Geoff,

Sorry you have now joined our club. I felt exactly the same as you did. Initial diagnosis and choosing ( yes you will probably have to choose your treatment option ) is one of the most stressful periods of this journey.

This website/forum is excellent. Look at the publications page and order or download the ones that are helpful. The toolkit is good.

I did a lot of research and I’m glad I did because most of the information I got from the medical professionals was adequate but seemed to gloss over some things.

Nobody on this forum should suggest a treatment for you, however the forum is full of life experiences which may help you decide your treatment path.

Wishing you all the best.

Rgds

Dave

User
Posted 19 Dec 2022 at 06:54

Thank you all again 

I can’t send direct messages as yet as I’m new and the platform doesn’t allow that yet but thanks to you all and to Brendan whom I can’t yet reply to directly? Good luck to you all. Whilst I’m a coward and I’m scared I’m also very determined and know I will get through this (with everyone’s support). Thank you.

User
Posted 19 Dec 2022 at 07:48

Hi Geoff sorry you are on here like us all I had Gleason 9 psa 25 and had 37 fractions off radiotherapy and 2 years off hormone therapy psa has been 0.01 since the end of radiotherapy good luck with your treatment gaz 👍

User
Posted 19 Dec 2022 at 11:41

Cooleymountain, 

You are correct that one part of the story is distant metastasis. It doesn't matter if you have RP or RT. If the cancer is lurking elsewhere you have a serious problem. Up until very recently if it was discovered in one or two places it was assumed it was probably in several hundred places and HT was the only way of slowing it down. Just recently if it is in one or two places it will be treated with SABR and this may provide a total cure.

Another possibility is cancer cells just outside of the prostate. These won't be removed by RP, but will get sufficient RT to kill* them.

As far as cancer in the prostate is concerned RP will definitely remove it. RT will kill* all of it.

(* Kill. It is possible that some will survive but I think it is a very small chance with modern RT)

Completely separate to this is the possibility of a brand new tumour, Old Barry had this. I don't know how common it is. It can not be irradiated again, and RP on a fried prostate is pretty much guaranteed incontinence. For old Barry it was treated with HIFU.

So fracij is right if the prostate is removed, you have eliminated the chance of any cancer remaining in prostate and any chance of a tumour starting again. But RT has the advantage in clearing the prostate bed.

If you are T1,T2 don't worry too much about the prostate bed. If you are T3 do worry about it.

I would argue that the possible side effects of RP are not worth the risk in any situation. The side effects of RT plus two years of HT, are bearable. Others have a different view on side effects, so in the end that is your personal opinion.

Apparently in the end both give you about a 70% chance of full remission, so it doesn't really matter which you choose.

I was not offered RP, my cancer was T3 with extra capsular extension. So cancer cells were almost certainly in the prostate bed.

Nowadays no one with a cancer diagnosis puts on a hair shirt in penance. But many say they will change there diet to a miserable diet, and they opt for attacking the cancer and their bodies with sharp knives (my view of surgery). I am of the opinion that these are motivated by the same attitude as hair shirt penance. Try to follow the logic not the emotions. RP and RT are both valid treatments just choose one for the right reasons.

Edited by member 19 Dec 2022 at 11:43  | Reason: Not specified

Dave

User
Posted 19 Dec 2022 at 12:22

Had hot flushes that's all it was all tolerable and I worked all the way through treatment yes ok now nearly back to normal but only just stopped hormone therapy so will be a while in my system but feeling really well 👍

Show Most Thanked Posts
User
Posted 17 Dec 2022 at 23:19


Hi Geoff,

My first suggestion is that you obtain a complete diagnosis, either through your treating hospital or GP and rquest that you be copied into all correspondence. You could then put this into your Profile/Bio so we have a better idea of your situation and can make more meaningful replies. The fact that you have been offered either Robotic Prostatectomy or HT +RT indicates your cancer has been found at a fairly early stage and that you are offered treatment with curative intent.

Secondly, I suggest you download or get a hard copy of the 'Tool Kit' which gives basic details of the disease and comments on treatments. This may well answer some of your questions but this disease and it's treatment is quite involved, so you make still wish to ask further questions. It is often left to the patient to decide which of the treatment patients open to him he opts for. This is because there are pros and cons for all treatments and side effects can differ and considering these different men can make different decisions.
https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 17 Dec 2022 at 23:20  | Reason: to highlight link

Barry
User
Posted 18 Dec 2022 at 00:28

Geoff, you'll be surprised at how quickly you get over this initial shock, especially if you read a few posts on this forum and realise that prostate cancer is quite normal and is just a result of growing old. 

Yes now you have to do some investigation, decide your priorities in life, and then choose a treatment which hopefully won't do much harm. 

Dave

User
Posted 18 Dec 2022 at 06:57
Try not to get too stressed about it: prostate cancer is basically a matter of being a man and living long enough and, when caught at any early stage (as yours has been) is an eminently treatable condition.

As you rightly surmise, both surgery and radiotherapy have side-effects. Basically a question of whether you prefer to get it over with quickly via surgery or slowly and more gently via RT. RT was (for various reasons) strongly recommended in my case; I found it all entirely bearable and I'd be happy to answer any questions you have about it.

Best wishes,

Chris

User
Posted 18 Dec 2022 at 07:16
The other factor apart from choice of preferred side effects is your attitude to the risk associated with still having a prostate if you take the RT option.

Having it removed means that particular part of your anatomy is never going to cause issues again and the cancer is guaranteed not to come back in your prostate.

Educate yourself about the latest research on RP v RT for your particular staging and make an informed decision.

Try not to look at old case statistics as both RT and RP have reduced their side effect profile in recent years.

User
Posted 18 Dec 2022 at 07:22
Hi Geoff,

Sorry you have now joined our club. I felt exactly the same as you did. Initial diagnosis and choosing ( yes you will probably have to choose your treatment option ) is one of the most stressful periods of this journey.

This website/forum is excellent. Look at the publications page and order or download the ones that are helpful. The toolkit is good.

I did a lot of research and I’m glad I did because most of the information I got from the medical professionals was adequate but seemed to gloss over some things.

Nobody on this forum should suggest a treatment for you, however the forum is full of life experiences which may help you decide your treatment path.

Wishing you all the best.

Rgds

Dave

User
Posted 18 Dec 2022 at 07:30

Thank you all for the initial replies. I will do more research, download the toolkit suggested and I’m sure I will return soon to discuss. Thank you all again. Best Wishes to you all and hope you all have a good Xmas with family and friends. 👍

User
Posted 18 Dec 2022 at 07:47

Thanks Barry - all down loaded 

User
Posted 18 Dec 2022 at 07:48

Thanks Dave

User
Posted 18 Dec 2022 at 07:48

Thank you 

User
Posted 18 Dec 2022 at 07:49

Thanks Chris

User
Posted 19 Dec 2022 at 01:38

Francij1 

As you will have gleaned from my other posts, I am a man looking for answers and not professing to know any regarding treatment. I am also still considering options. 

I find your point about RP being worthy of consideration, a reasonable hypothesis "as without a prostate, the cancer will not return there". It certainly got me thinking. It is a very valid consideration indeed. 

I find this observation to be very helpful, as it appears to me that generally there seem to be more in the RT camp than the RP camp. Indeed at this moment in time I am also there but still pondering.

However, it also questions from me:

1. Surely the fact that the prostate is gone is only part of the story, for the cancer may be lurking undetected in other parts of the body?

2. If one had RT and the cancer returned to a different part of the prostate could this be radiated?

3. Are there any statistics about returning cancer within the prostate following RT?

Your answer for me on my journey, is very stimulating as it touches on an aspect of recurrence that I had hitherto not considered, neither have I seen much reference to cancer returning within the prostate. Most posts that I have read have talked about recurrence, but unless I was sleepwalking, I had deduced that the recurrence was found in other parts of the body as the cells had escaped and been undetected. I hope this makes sense and elicits some responses that will assist in providing answers to the initial question.

Brendan 

Cooleymountain 

 

 

 

 

Edited by member 19 Dec 2022 at 01:41  | Reason: Not specified

Cooleymountain 

User
Posted 19 Dec 2022 at 06:54

Thank you all again 

I can’t send direct messages as yet as I’m new and the platform doesn’t allow that yet but thanks to you all and to Brendan whom I can’t yet reply to directly? Good luck to you all. Whilst I’m a coward and I’m scared I’m also very determined and know I will get through this (with everyone’s support). Thank you.

User
Posted 19 Dec 2022 at 07:48

Hi Geoff sorry you are on here like us all I had Gleason 9 psa 25 and had 37 fractions off radiotherapy and 2 years off hormone therapy psa has been 0.01 since the end of radiotherapy good luck with your treatment gaz 👍

User
Posted 19 Dec 2022 at 07:51

Gaz

what were your side effects like? 

 

thanks for responding 

 

are you back to normal now?

 

Best Wishes 

 

geoff

User
Posted 19 Dec 2022 at 11:41

Cooleymountain, 

You are correct that one part of the story is distant metastasis. It doesn't matter if you have RP or RT. If the cancer is lurking elsewhere you have a serious problem. Up until very recently if it was discovered in one or two places it was assumed it was probably in several hundred places and HT was the only way of slowing it down. Just recently if it is in one or two places it will be treated with SABR and this may provide a total cure.

Another possibility is cancer cells just outside of the prostate. These won't be removed by RP, but will get sufficient RT to kill* them.

As far as cancer in the prostate is concerned RP will definitely remove it. RT will kill* all of it.

(* Kill. It is possible that some will survive but I think it is a very small chance with modern RT)

Completely separate to this is the possibility of a brand new tumour, Old Barry had this. I don't know how common it is. It can not be irradiated again, and RP on a fried prostate is pretty much guaranteed incontinence. For old Barry it was treated with HIFU.

So fracij is right if the prostate is removed, you have eliminated the chance of any cancer remaining in prostate and any chance of a tumour starting again. But RT has the advantage in clearing the prostate bed.

If you are T1,T2 don't worry too much about the prostate bed. If you are T3 do worry about it.

I would argue that the possible side effects of RP are not worth the risk in any situation. The side effects of RT plus two years of HT, are bearable. Others have a different view on side effects, so in the end that is your personal opinion.

Apparently in the end both give you about a 70% chance of full remission, so it doesn't really matter which you choose.

I was not offered RP, my cancer was T3 with extra capsular extension. So cancer cells were almost certainly in the prostate bed.

Nowadays no one with a cancer diagnosis puts on a hair shirt in penance. But many say they will change there diet to a miserable diet, and they opt for attacking the cancer and their bodies with sharp knives (my view of surgery). I am of the opinion that these are motivated by the same attitude as hair shirt penance. Try to follow the logic not the emotions. RP and RT are both valid treatments just choose one for the right reasons.

Edited by member 19 Dec 2022 at 11:43  | Reason: Not specified

Dave

User
Posted 19 Dec 2022 at 12:22

Had hot flushes that's all it was all tolerable and I worked all the way through treatment yes ok now nearly back to normal but only just stopped hormone therapy so will be a while in my system but feeling really well 👍

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK