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User
Posted 31 Oct 2024 at 15:10

I’ve been trying to find studies with enough participants and time elapsed that will show any patterns of treatment satisfaction over time and cancer reoccurrence rates, its not easy! Being new to all this ( I was diagnosed with a T2c 3+4 on Monday, two recent PSAs of 5.2 and then 4.7) it seems bizarre that there is no go to treatment considering the numbers of men world wide who sadly seem to get it…☹

The only study I’ve been able to find so far is from an American platform, prostatecancerfree.org. They claim to have the put together data on 129,000 men with prostate cancer. Is anyone familiar with it? It offers success and reoccurrence rates on several treatment options. The study seems to show some quite specific patterns over which some treatments perform better than others, particularly for those with an intermediate or high risk diagnosis.  Everywhere else I’ve been looking, and the kind people on here who responded to my first post with some helpful advice/suggestions, seems to show there is no clear ‘better treatment’.

A little knowledge is dangerous I know, but my urologist strongly suggested NSRP and was a little dismissive of Brachy. Most things I’ve looked at seem to suggest Brachy has similar results and reoccurrence rates (or better according to the study from prostecancerfree.org) but few people seem to have Brachytherapy? Have I got that wrong?

I'm going to speak to an oncologist as was suggested to me on here to get their thoughts. I am sure I am treading a well-worn path taken by us newly diagnosed of ‘looking for answers’ that probably don’t clearly exist, but the prostatecancerfree.org study, seems to show Brachy as a better option for treatment success and non-reoccurrence than NSRP. Brachy also seems to be a much less invasive procedure than surgery, and thats without all the risks that go with surgey, the much longer rehab, and the ED and incontinence issues looking more likley with surgey. There are the longer term risks with the bowel and bladder problems with RT I've read, but possible long term incontinence and ED don't sound great either with NSRP..

Maybe I’m just going down unhelpful rabbit holes, but after chatting with the consultant I thought surgery was really the only option.. now I’m not so sure.

Thanks in advance for any insight/help.

 

 

User
Posted 14 Nov 2024 at 13:01

I thought I’d update you on my experiences so far, hopefully it'll help someone. 

I have seen or spoken to consultants, professors and oncologists in Brighton, Southampton, Guildford, and London. Except for one professor who has strongly advised to have surgery, everyone else has said there are different options, that will likely have a similar outcome but with different journeys and side effects. They have a preference for their fields of expertise as you'd expect. Initially I was keen on the idea of Brachytherapy as that looked a lot less invasive than surgery and with very similar mid/long term outcomes. However, the specialist oncologist said she thought I should have 6 months of hormone therapy, 3 months pre brachy and 3 months post brachy, and after looking into HT I really didn’t like the idea of the side effects. Plus waiting a further 3 months after 3 months of trial and tribulations with getting diagnosed and getting to this point, I am not sure my mental health would be able to cope with the HT side effects and the waiting… So, in 2 weeks I am having a NSRP that with be with the single port Da Vinci Robot, Retzius sparing and with the Neuro safe procedure too…I am not delighted that I must have surgery but what I have learned with my 3+4 T2c is that it’s probably my best option. Non of the treastmenest sounds great, and as one of the professorssaid to me'its a case of choosing your posion'.

Like us all I hoped of course it wasn’t cancer, then I hoped it would be no worse than a 3+3 so we could possibly watch and wait, then I hoped if that wasn’t an option then focal therapy would be possible… All those have been ruled out and the brachy with 6 months HT seems a worse option than the surgery now. So, I finally have a treatment plan. I have found the process of trying to find the most suitable treatment mentally exhausting tbh… I’ve been told that its ‘lucky’ to have options as many others don’t have that opportunity, I appreciate that, and I hope I can look back on that and agree. I haven’t felt particularly lucky with any of it if I’m honest!   I’ll post what I experience with the surgery and then post op experiences too so hopefully they’ll help someone on a similar path. Thanks for your thoughts and comments guys.

User
Posted 31 Oct 2024 at 15:10

I’ve been trying to find studies with enough participants and time elapsed that will show any patterns of treatment satisfaction over time and cancer reoccurrence rates, its not easy! Being new to all this ( I was diagnosed with a T2c 3+4 on Monday, two recent PSAs of 5.2 and then 4.7) it seems bizarre that there is no go to treatment considering the numbers of men world wide who sadly seem to get it…☹

The only study I’ve been able to find so far is from an American platform, prostatecancerfree.org. They claim to have the put together data on 129,000 men with prostate cancer. Is anyone familiar with it? It offers success and reoccurrence rates on several treatment options. The study seems to show some quite specific patterns over which some treatments perform better than others, particularly for those with an intermediate or high risk diagnosis.  Everywhere else I’ve been looking, and the kind people on here who responded to my first post with some helpful advice/suggestions, seems to show there is no clear ‘better treatment’.

A little knowledge is dangerous I know, but my urologist strongly suggested NSRP and was a little dismissive of Brachy. Most things I’ve looked at seem to suggest Brachy has similar results and reoccurrence rates (or better according to the study from prostecancerfree.org) but few people seem to have Brachytherapy? Have I got that wrong?

I'm going to speak to an oncologist as was suggested to me on here to get their thoughts. I am sure I am treading a well-worn path taken by us newly diagnosed of ‘looking for answers’ that probably don’t clearly exist, but the prostatecancerfree.org study, seems to show Brachy as a better option for treatment success and non-reoccurrence than NSRP. Brachy also seems to be a much less invasive procedure than surgery, and thats without all the risks that go with surgey, the much longer rehab, and the ED and incontinence issues looking more likley with surgey. There are the longer term risks with the bowel and bladder problems with RT I've read, but possible long term incontinence and ED don't sound great either with NSRP..

Maybe I’m just going down unhelpful rabbit holes, but after chatting with the consultant I thought surgery was really the only option.. now I’m not so sure.

Thanks in advance for any insight/help.

 

 

User
Posted 31 Oct 2024 at 19:12
I find it a mind blowing that I am supposed to make a decison about something i know literally nothing about apart from what ive read/been told in a few days. There are clearly many brilliant medical professionals that are highly skilled, experienced and hugely knowledgable, yet they will expect me to make a decison as to the right way forward.. I cannot think of many other scenarios where this would happen. Im still a little shell shocked with the diagnosis tbh, and perhaps rambling unhelpfully, I still find it very very strange though...
User
Posted 31 Oct 2024 at 19:36

Hi Adrian I get there are no guarantees, but there must be 'better options' that medical professionals with years of experience would be best placed to suggest. I guess Im answering my own question really as the urlogist said to me  surgery...but, from what ive seen in this forum it looks like its not always that straightforward. Thanks for the message, I hope you're well. 

User
Posted 31 Oct 2024 at 19:50

Gus, I entirely agree with you. It seems ridiculous to me that clinicians can't get their heads together to say that a particular treatment path is likely to have better outcomes than another.

Perhaps, in the future, they'll input all your details into a computer and artificial intelligence will calculate your best treatment option.

Edited by member 01 Nov 2024 at 05:22  | Reason: Additional text

User
Posted 01 Nov 2024 at 08:56
Thanks for the response Gee. Ive spoken again with my surgeon and he says he expects me to make a very good recovery given my circumstances. He mentioned you could use a neurosafe technic but said he wasnt yet convinced it made a genuine difference as the outcome of examining the frozen prostate surface is not as black and white as a pathology report,so risks removing healthy tissue too, he said it'll take a few years for the data to show whether its better or not. He said he would do it if I wanted but wasnt his reccomendation...His comments were that if I get a reoccurence then its much more staightforward to deal with post RP than Brachy. He has set up a meeting for me with a consultant who does Brachy, I'll see how that goes. I do feel a bit lost though... I hope your symptomes eventually improve, good news though that your PSA is undetectable.
User
Posted 02 Nov 2024 at 07:14
I think when looking online at various studies everything can become very confusing. The problem is the variables. The studies are carried out over different time frames, include patients with different Gleason scores, different stages of disease, positive, negative margins, PNI etc, etc. The studies including men who undergo radiotherapy as their primary treatment may even be less reliable as often it is only after a prostactomy the true extent of disease is recognised. That is another minefield the studies on upgrading and downgrading of disease following surgery.

My husband chose surgery in May this year and I think primarily because if there is a reoccurrence more pathways remain open to you ie salvage radiotherapy. I think in your circumstances I would speak to the experts the surgeon and oncologist available to you to reach a personalised decision. We have all been there either personally or with loved ones but there is no perfect solution for anyone or even a clear cut solution. In this country it seems broadly surgery is often recommended to younger men and radiotherapy to older men. I am not sure of the rationale for this but may be a question for the Team around you.

I wish you all the very best in whatever decision you take.

User
Posted 04 Nov 2024 at 03:47

Where you are offered several treatment options you can look at each in two ways. One is to consider all that is involved in having a treatment and what may be needed as follow up and potential side effects. The other aspect is what treatment is likely to give you a better outcome in the short to long term. There are numerous things that have a bearing on this, some can be determined by clinicians, like the type and extent of cancer you have as mentioned here https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/types. But there as so many variables as affects PCa patients as to why some treatments will work better for one patient than another beyond the type of their cancer, it's position, extent and possible spread as well as how resistant an individual will be to a particular treatment. So it is here that a patient needs as much help as possible from his clinicians and even then they will be making some assumptions on his case based on diagnostic tests and their experience. Trials don't give a sufficiently good indication to an individual. They don't account for how well treatment was delivered and how dated equipment and techniques used were and sometimes how suitable those taking part were. Your best and most up to date information comes from your personal expert advisors on how they see your case and even they may not always agree. It is often the case that different treatments are likely to deal satisfactorily with a candidates cancer at least in the short trerm. In the longer term any initial treament may require supplementing. A patient's Doctors may well leave the final decision to the individual who having considered medical possibilities, what is involved in a treatment and potential side effects, can decide what to opt for.

It may be helpful to read the information on various treatments provided by this Charity in the 'Tool l Kit' as here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 04 Nov 2024 at 03:49  | Reason: to highlight link

Barry
User
Posted 04 Nov 2024 at 16:38

Hi Gus,

You will find that each specialist  will push you towards his procedure every time as i found so it is better to read up as much as possible about each option and the side affects and there are many members on here to help you.

I had the choice of Robotic removal or Brachytherapy and went down the Brachytherapy route as i felt the side affects would be less and also the operation is less intrusive .

I am 8 years on and doing very well so far and had no side affects worth talking about. 

If you click on my Avatar you can see my journey so far.

John.

Show Most Thanked Posts
User
Posted 31 Oct 2024 at 18:34

Originally Posted by: Online Community Member
my urologist strongly suggested NSRP and was a little dismissive of Brachy.

You can substitute "all other treatments" for Brachy in this sentence.

You need to speak with the practitioners of each treatment you are interested in.

User
Posted 31 Oct 2024 at 18:56
Thanks Andy
User
Posted 31 Oct 2024 at 19:05

In my experience, you can talk to as many specialist consultants as you want but you'll be non the wiser. They are usually very non committal, or very rarely proclaim to save as well as Jesus. 

It seems to me that there are no guarantees for any particular treatment. Or am I just being totally cynical?

 

Edited by member 31 Oct 2024 at 19:21  | Reason: Typo

User
Posted 31 Oct 2024 at 19:12
I find it a mind blowing that I am supposed to make a decison about something i know literally nothing about apart from what ive read/been told in a few days. There are clearly many brilliant medical professionals that are highly skilled, experienced and hugely knowledgable, yet they will expect me to make a decison as to the right way forward.. I cannot think of many other scenarios where this would happen. Im still a little shell shocked with the diagnosis tbh, and perhaps rambling unhelpfully, I still find it very very strange though...
User
Posted 31 Oct 2024 at 19:36

Hi Adrian I get there are no guarantees, but there must be 'better options' that medical professionals with years of experience would be best placed to suggest. I guess Im answering my own question really as the urlogist said to me  surgery...but, from what ive seen in this forum it looks like its not always that straightforward. Thanks for the message, I hope you're well. 

User
Posted 31 Oct 2024 at 19:50

Gus, I entirely agree with you. It seems ridiculous to me that clinicians can't get their heads together to say that a particular treatment path is likely to have better outcomes than another.

Perhaps, in the future, they'll input all your details into a computer and artificial intelligence will calculate your best treatment option.

Edited by member 01 Nov 2024 at 05:22  | Reason: Additional text

User
Posted 01 Nov 2024 at 07:26

Gus, Your assessment of the situation is spot-on. That was precisely how I felt at diagnosis almost 3yrs ago. I felt like a rabbit caught in the headlights... Sadly, I did not have this great website resource to help me, I had 5mins "consultation with each of the experts, even did 2 further biopsies to check if I was eligible for HiFU, in the end the decision to proceed (with HiFU or any other treatment was left to me). Mine I was told off the cuff was slow growing, and I thought I could leave it alone, the consultant then said, if I did, I would be home in 15yrs. 

In the end I went for surgery, and 2.5yrs on have all the side effects you already alluded to. From a cancer point of view PDA has remained undetectable, however the issues still persists. I do sometimes wonder with all these side effects if I made the right call!

User
Posted 01 Nov 2024 at 08:56
Thanks for the response Gee. Ive spoken again with my surgeon and he says he expects me to make a very good recovery given my circumstances. He mentioned you could use a neurosafe technic but said he wasnt yet convinced it made a genuine difference as the outcome of examining the frozen prostate surface is not as black and white as a pathology report,so risks removing healthy tissue too, he said it'll take a few years for the data to show whether its better or not. He said he would do it if I wanted but wasnt his reccomendation...His comments were that if I get a reoccurence then its much more staightforward to deal with post RP than Brachy. He has set up a meeting for me with a consultant who does Brachy, I'll see how that goes. I do feel a bit lost though... I hope your symptomes eventually improve, good news though that your PSA is undetectable.
User
Posted 01 Nov 2024 at 09:27

Hello Gus, this is exactly how I felt after being left to choose an option, especially after having one consultant say surgery the best route and another saying HT/RT. Like you say they're the experts, I was somebody who only recently discovered what the prostate actually does (other than turn cancerous and try and kill me ;))

I plumped for HT/RT after being told it was my best chance of cure, and surgery would not be nerve sparing and I would most likely need RT/HT anyway. I am T3B (very early) N0M0 gleason 7 (3+4)

It's a shame you can't fast forward each scenario to see outcomes both in respect to cure and side effects. Mind you if I had the power to manipulate time, space and matter like that I'd remove cancer as a thing, like the Beatles in the film Yesterday.... I'd keep the Beatles though.

All the best in your choosing

John

User
Posted 01 Nov 2024 at 13:59
Thanks for the message John. I'll see where the conversation with the Brachy consultant goes and hopefully make the right choice.. Good luck with your journey :)
User
Posted 01 Nov 2024 at 14:20

Originally Posted by: Online Community Member
His comments were that if I get a reoccurence then its much more staightforward to deal with post RP than Brachy. He has set up a meeting for me with a consultant who does Brachy, I'll see how that goes. I do feel a bit lost though... I hope your symptomes eventually improve, good news though that your PSA is undetectable.

This point is what really swayed my decision. I also on reflection, the fact that several avenues or choices are open is in itself a good starting point to be in. In a way, I like the democratisation of the treatment options. As the alternative could have been, to be railroaded into an option due to severity of the disease. So a lot to be thankful for. I see a lot of famous men, who have gone through the same paths and have come out the other side intact. I complain about my incontinence, I am bone dry when I am awake, no matter what I do, my only issue is at night when I am asleep. As for the ED, the fix again is VED which I use to great effect, so really like I said, I have a lot to be grateful for that the disease was caught early.

I often hear the well worn phrase that most men will die with it than as a result of the disease. However, my wife's uncle (mid 80s) is dying from it as we speak. He is in so much pain and it is painful to see.

User
Posted 01 Nov 2024 at 17:56

Sorry to hear about your wifes uncle ☹ I hope they get him as comfortable as possible.

I have read so many different stats about reoccurrence rates it is so unhelpful. Ranging from 5% to 20 -50%!!  It’s a mine field… ....The more I try and find answers the worse it seems to get!  

User
Posted 01 Nov 2024 at 19:21

I was in the same boat but came to the conclusion that there's no right or wrong or good or bad treatment choices, it's seems to be totally random and  individual. Reading this forum its become  clear to me that everyone reacts differently to the treatments and recovers differently so I don't think it's possible to say this or that route is better. I went with my gut feeling that surgery was the best option for me personally. Sometimes now I wonder if it was but as things improve thoughts change. Do I worry about reoccurrence, yes I do,  could it be in 6 months or 5 years or never. I guess we all have these thoughts unfortunately.  I wish it was easier for everyone with a clearer documented route to a healthy outcome. 

User
Posted 02 Nov 2024 at 07:14
I think when looking online at various studies everything can become very confusing. The problem is the variables. The studies are carried out over different time frames, include patients with different Gleason scores, different stages of disease, positive, negative margins, PNI etc, etc. The studies including men who undergo radiotherapy as their primary treatment may even be less reliable as often it is only after a prostactomy the true extent of disease is recognised. That is another minefield the studies on upgrading and downgrading of disease following surgery.

My husband chose surgery in May this year and I think primarily because if there is a reoccurrence more pathways remain open to you ie salvage radiotherapy. I think in your circumstances I would speak to the experts the surgeon and oncologist available to you to reach a personalised decision. We have all been there either personally or with loved ones but there is no perfect solution for anyone or even a clear cut solution. In this country it seems broadly surgery is often recommended to younger men and radiotherapy to older men. I am not sure of the rationale for this but may be a question for the Team around you.

I wish you all the very best in whatever decision you take.

User
Posted 03 Nov 2024 at 20:02

Thanks. I have set up a few appointments with different consultants, hopefully a path will become clear. 

User
Posted 04 Nov 2024 at 03:47

Where you are offered several treatment options you can look at each in two ways. One is to consider all that is involved in having a treatment and what may be needed as follow up and potential side effects. The other aspect is what treatment is likely to give you a better outcome in the short to long term. There are numerous things that have a bearing on this, some can be determined by clinicians, like the type and extent of cancer you have as mentioned here https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/types. But there as so many variables as affects PCa patients as to why some treatments will work better for one patient than another beyond the type of their cancer, it's position, extent and possible spread as well as how resistant an individual will be to a particular treatment. So it is here that a patient needs as much help as possible from his clinicians and even then they will be making some assumptions on his case based on diagnostic tests and their experience. Trials don't give a sufficiently good indication to an individual. They don't account for how well treatment was delivered and how dated equipment and techniques used were and sometimes how suitable those taking part were. Your best and most up to date information comes from your personal expert advisors on how they see your case and even they may not always agree. It is often the case that different treatments are likely to deal satisfactorily with a candidates cancer at least in the short trerm. In the longer term any initial treament may require supplementing. A patient's Doctors may well leave the final decision to the individual who having considered medical possibilities, what is involved in a treatment and potential side effects, can decide what to opt for.

It may be helpful to read the information on various treatments provided by this Charity in the 'Tool l Kit' as here https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 04 Nov 2024 at 03:49  | Reason: to highlight link

Barry
User
Posted 04 Nov 2024 at 16:38

Hi Gus,

You will find that each specialist  will push you towards his procedure every time as i found so it is better to read up as much as possible about each option and the side affects and there are many members on here to help you.

I had the choice of Robotic removal or Brachytherapy and went down the Brachytherapy route as i felt the side affects would be less and also the operation is less intrusive .

I am 8 years on and doing very well so far and had no side affects worth talking about. 

If you click on my Avatar you can see my journey so far.

John.

User
Posted 04 Nov 2024 at 18:56

John , probably the exception and it was a few years ago ,but the senior oncologist at our hospital said something along the lines of the following. If a guy is suitable for surgery or RT, I would push him towards surgery. He went on to mention removal of the mothership and easier salvage options.

Many will suggest it is flawed thinking and I am not qualified to comment. 

Thanks Chris 

User
Posted 14 Nov 2024 at 13:01

I thought I’d update you on my experiences so far, hopefully it'll help someone. 

I have seen or spoken to consultants, professors and oncologists in Brighton, Southampton, Guildford, and London. Except for one professor who has strongly advised to have surgery, everyone else has said there are different options, that will likely have a similar outcome but with different journeys and side effects. They have a preference for their fields of expertise as you'd expect. Initially I was keen on the idea of Brachytherapy as that looked a lot less invasive than surgery and with very similar mid/long term outcomes. However, the specialist oncologist said she thought I should have 6 months of hormone therapy, 3 months pre brachy and 3 months post brachy, and after looking into HT I really didn’t like the idea of the side effects. Plus waiting a further 3 months after 3 months of trial and tribulations with getting diagnosed and getting to this point, I am not sure my mental health would be able to cope with the HT side effects and the waiting… So, in 2 weeks I am having a NSRP that with be with the single port Da Vinci Robot, Retzius sparing and with the Neuro safe procedure too…I am not delighted that I must have surgery but what I have learned with my 3+4 T2c is that it’s probably my best option. Non of the treastmenest sounds great, and as one of the professorssaid to me'its a case of choosing your posion'.

Like us all I hoped of course it wasn’t cancer, then I hoped it would be no worse than a 3+3 so we could possibly watch and wait, then I hoped if that wasn’t an option then focal therapy would be possible… All those have been ruled out and the brachy with 6 months HT seems a worse option than the surgery now. So, I finally have a treatment plan. I have found the process of trying to find the most suitable treatment mentally exhausting tbh… I’ve been told that its ‘lucky’ to have options as many others don’t have that opportunity, I appreciate that, and I hope I can look back on that and agree. I haven’t felt particularly lucky with any of it if I’m honest!   I’ll post what I experience with the surgery and then post op experiences too so hopefully they’ll help someone on a similar path. Thanks for your thoughts and comments guys.

User
Posted 04 Dec 2024 at 17:24
Many thanks Gus37 for all your posts in this thread. I'm in a very similar position to how you were at the beginning of your journey. Coincidently I had also read the American outcomes study too! That and your thoughts have helped me immensely in getting to grips with the treatment decision I'll have to make shortly. I'll post up my own bio and thread so as not to steal your thunder! I do hope your recovery goes well.
User
Posted 04 Dec 2024 at 20:48

Glad its been some help. 

I had RARP last thursday, I didnt go for Brachy in the end as I was told i'd need 6 months HT, 3 months before and 3 months after. The idea of not dealing with it sooner, and the side effects I read about with HT put me off.

Good luck with your decision and journey. :)

User
Posted 05 Dec 2024 at 13:51

Something else I thought I'd share, it won't be everyones cup of tea but I have found it hugely helpful. I subscribe to Chat GPT4o and I started to use it for help/advise/information about PCa and all the different pathways etc we are able to take. It gave me very good (and I now know accurate) advice, and even a little counselling when I was flapping a bit... like I said it won't be for everyone, and you need to get everything verified but it has certainly helped me enourmesly. 

 
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