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Struggling to decide

User
Posted 17 Jan 2024 at 15:25

I am 54 and was diagnosed on 27 12 23. Gleason 6 (3+3) 5/29 cores with up to 50%

MDT meeting recommended surgery but also gave the option of radiotherapy or brachytherapy.

After meeting the surgeon and oncologist last week I was thinking I would have a clearer idea of what to do but I think the meetings just raised more questions.

I have tried to find out about focal therapy options but these seem to not be available in my area which is Lancashire.

I feel increasingly stressed as I am struggling to make a decision and am finding it hard to focus on other aspects of life.

I have tried talking to my allocated nurse and have spoken to the specialist nurses at pcuk but I am still finding it hard to commit to a treatment.

 

 

User
Posted 17 Jan 2024 at 16:21

Sorry you have found yourself in this situation but you will find a lot of support on these pages as we are all walking the same path.

The treatment question is one that most of us have faced and it is a very personal decision to weigh up the pros and cons of each. Fortunately, the success rate of each one seems to be extremely high and at G6 you are in a good position to go down any of the options offered.
Each will have cons that may be more impactful at 54 than some of us who are older and you need to think about how these may affect your quality of life.

Good luck with whatever you decide and ask questions because there are plenty of people here that have experienced each alternative.

Edited by member 17 Jan 2024 at 16:22  | Reason: speling again!

User
Posted 17 Jan 2024 at 19:55
I chose the surgery for myself based on the full understanding of the side effects and my lifestyle. At 62 sex isn't quite as important as it used to be and if I can still masturbate on demand and have fun with my wife once a week then I knew we would be fine with that. My RP wasn't quite straightforward and they had to remove the nerves - so no more natural erections. However floppy willy orgasms are actually rather nice and next week I get to try Caverject to see what that does - my wife is looking forward to seeing the results :)

Post surgery incontinence has been a bit of journey but slowly improving and down to a lightweight pad during the day for the occasional dribble when I cough .

Now I have found that my PSA is increasing so some cancer cells were left behind after the surgery and so I anticipate being referred for salvage radiotherapy in a few months time. No hormone therapy needed so that will avoid any problems there.

I was offered Brachy as an option but decided against it and glad I did as the final histology report was not as favourable as the scans had indicated and it would not have been very effective. However I could have pushed for HT/RT at the time but to be honest I just wanted it out of me LOL

But those decisions were very much based on my situation which is why I stress that it's a personal choice after you weigh up pros and cons. Age, sex life, job etc etc.

User
Posted 17 Jan 2024 at 19:59
Hi, Sean sorry that you find yourself in this quandary I was in the same situation January last year and deciding on which treatment route to go down was agonising, however the only advise I can offer is to get all the facts regarding all treatments offered and decide which treatment after careful consideration of all potential side effects, I also completed the NHS Predict tool and found out what my percentage chances were for each treatment, I finally decided on the 3month RT and 20 fractions of RT and finished my treatment June last year, you will feel much better once you decide which treatment route to go down and focus on recovery, I wish you with whatever route you go, cheers
User
Posted 17 Jan 2024 at 22:08

Hi Sean,

 everyone here will feel for you, and recognise the situation you are facing.

 My tuppence worth is to suggest that you stand back a bit and work out whether the issue is 'out there' ( i.e. you need more information/data) or 'in here' ( i.e. you need to work out what really matters most to you, based on the information you have or might reasonably get). They call for quite different strategies. If the issue is essentially 'in here', then adding to the pile of options, opinions and information can actually become counterproductive.

As you say, you are not going to be comfortable until you have made a decision, and this is absolutely true: you have to get to get to a point where you are at peace with whatever conclusion you reach. Whatever that conclusion is, you will be living with it for a long while and you will never know what any alternative path might have led to; so take your time, irrespective of the pressure on you to agree to a treatment plan. And try not to chase the dragon of the 'right' choice: there isn't one. 

Best of luck with whatever route you take

User
Posted 17 Jan 2024 at 15:25

I am 54 and was diagnosed on 27 12 23. Gleason 6 (3+3) 5/29 cores with up to 50%

MDT meeting recommended surgery but also gave the option of radiotherapy or brachytherapy.

After meeting the surgeon and oncologist last week I was thinking I would have a clearer idea of what to do but I think the meetings just raised more questions.

I have tried to find out about focal therapy options but these seem to not be available in my area which is Lancashire.

I feel increasingly stressed as I am struggling to make a decision and am finding it hard to focus on other aspects of life.

I have tried talking to my allocated nurse and have spoken to the specialist nurses at pcuk but I am still finding it hard to commit to a treatment.

 

 

User
Posted 17 Jan 2024 at 21:48
Hi Sean, sorry you find yourself here…but pleased you did find it. My husband is just about9 months ahead of you in the journey (also Lancashire based). It is mentally draining at each stage but you just get through it! Only you (and your partner) can make the choices you need to make. For Steve, he just wanted the cancer out asap and chose surgery (robotic prostatectomy) which he had last Wednesday, sadly he is still in hospital as he had a couple of problems, which are rare, but he is on the mend now and hoping to get him home early next week. His Gleason was 7 (3+4). We read so much information and found out so much on here. Despite the issues he has had this week, he still strongly feels surgery was the right choice for him and it has given him a good chance of going forward cancer free. He is 62 and his op was 80% nerve sparing so we have yet to see what impact and extent post surgical problems pose!

Wishing you all the best

Debbie

User
Posted 17 Jan 2024 at 22:31

Hi Sean,

I can only offer advice based on what all my friends at Maggies PCa support Group tell me. None of them regret choosing surgery, in fact All of them who HAD a choice went down this route. on the other hand there are a few(including me) who wish we had the choice and would have chosen surgery. Having said that, those who have surgery have to deal with incontinence of various degrees and duration and also ED. Neither is and ‘easy’ option so take your time if you’re allowed…and why not try and speak to people who’ve had the Op by the surgeon who’ll be doing your Op. Also do some research to find out how many he has done. Men who go down the HT/RT route have to deal with many side effects but it very much seems to depend on the individual. Some get off lightly, others (like me😟) seem to have just about every side effects going…and more!
If you’ve got a local PCa Group, go along to it and speak to the guys there, I think it might help you come to your decision.

All the best whatever you decide.

Derek

User
Posted 17 Jan 2024 at 22:49

Hi Sean

I was in the same position as you last August. I was diagnosed 3+4=7, tumours in both sides, 11 cores from 20 were positive. I was recommended surgery, but when my results were checked at a different hospital for a meeting with the surgeon, they reckoned I was actually 3+3=6 like you. At this point they offered me the chance of Active Surveillance as an option. Is this something you are able to consider? It may only be delaying the inevitable, but could mean more time (possibly quite a while) before having to put up with the side effects of whichever treatment we opt for?

Good luck mate, with whatever you decide.

Ian.

User
Posted 17 Jan 2024 at 23:02

Originally Posted by: Online Community Member

Thanks Steve

I am edging towards surgery but massively nervous about the potential likely side effects as well as being anxious about the surgery itself

My concerns about radiotherapy / brachytherapy are more about potential long term side effects and if there is a reoccurrence (which I hope there wouldn’t be) less options for further treatment

I feel in limbo and that I won’t be able to start moving forwards both physically and emotionally until I have made up my mind

 

 

 

it’s a horrible feeling being in limbo, and even when you decide there are what ifs… 

 

my husband has Gleason 6 and AS was an option,which he felt wasn’t for him,  he’s decided on RT and having had lots of time to consider he just wants to get on with it and starts soon all being well.

I just wanted to say we were concerned that if he had RT and there was a recurrence there was no surgical option, yet surgery seemed daunting for G6. We were reassured by the oncologist who said he was confident with this grade there would be a cure and no recurrence. 

however, my husband is 66, and age I am aware does affect decision making and MDT recommendations. 

all I can say is ask the surgeon and oncologist everything that is on your mind, be guided by their experience. But only you can decide what’s right for you. Good luck. 

User
Posted 18 Jan 2024 at 08:40

Originally Posted by: Online Community Member

Weren't you offered active surveillance ? (AS)

On the bare facts we've been given you would have thought AS was an option. Especially as the NICE guidelines amendments 2021 are suggesting more men with localised, low grade/volume/Gleason score should consider AS as opposed to radical treatments.

 

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User
Posted 17 Jan 2024 at 16:21

Sorry you have found yourself in this situation but you will find a lot of support on these pages as we are all walking the same path.

The treatment question is one that most of us have faced and it is a very personal decision to weigh up the pros and cons of each. Fortunately, the success rate of each one seems to be extremely high and at G6 you are in a good position to go down any of the options offered.
Each will have cons that may be more impactful at 54 than some of us who are older and you need to think about how these may affect your quality of life.

Good luck with whatever you decide and ask questions because there are plenty of people here that have experienced each alternative.

Edited by member 17 Jan 2024 at 16:22  | Reason: speling again!

User
Posted 17 Jan 2024 at 16:58

Thanks Steve

I am edging towards surgery but massively nervous about the potential likely side effects as well as being anxious about the surgery itself

My concerns about radiotherapy / brachytherapy are more about potential long term side effects and if there is a reoccurrence (which I hope there wouldn’t be) less options for further treatment

I feel in limbo and that I won’t be able to start moving forwards both physically and emotionally until I have made up my mind

 

 

User
Posted 17 Jan 2024 at 19:55
I chose the surgery for myself based on the full understanding of the side effects and my lifestyle. At 62 sex isn't quite as important as it used to be and if I can still masturbate on demand and have fun with my wife once a week then I knew we would be fine with that. My RP wasn't quite straightforward and they had to remove the nerves - so no more natural erections. However floppy willy orgasms are actually rather nice and next week I get to try Caverject to see what that does - my wife is looking forward to seeing the results :)

Post surgery incontinence has been a bit of journey but slowly improving and down to a lightweight pad during the day for the occasional dribble when I cough .

Now I have found that my PSA is increasing so some cancer cells were left behind after the surgery and so I anticipate being referred for salvage radiotherapy in a few months time. No hormone therapy needed so that will avoid any problems there.

I was offered Brachy as an option but decided against it and glad I did as the final histology report was not as favourable as the scans had indicated and it would not have been very effective. However I could have pushed for HT/RT at the time but to be honest I just wanted it out of me LOL

But those decisions were very much based on my situation which is why I stress that it's a personal choice after you weigh up pros and cons. Age, sex life, job etc etc.

User
Posted 17 Jan 2024 at 19:59
Hi, Sean sorry that you find yourself in this quandary I was in the same situation January last year and deciding on which treatment route to go down was agonising, however the only advise I can offer is to get all the facts regarding all treatments offered and decide which treatment after careful consideration of all potential side effects, I also completed the NHS Predict tool and found out what my percentage chances were for each treatment, I finally decided on the 3month RT and 20 fractions of RT and finished my treatment June last year, you will feel much better once you decide which treatment route to go down and focus on recovery, I wish you with whatever route you go, cheers
User
Posted 17 Jan 2024 at 21:48
Hi Sean, sorry you find yourself here…but pleased you did find it. My husband is just about9 months ahead of you in the journey (also Lancashire based). It is mentally draining at each stage but you just get through it! Only you (and your partner) can make the choices you need to make. For Steve, he just wanted the cancer out asap and chose surgery (robotic prostatectomy) which he had last Wednesday, sadly he is still in hospital as he had a couple of problems, which are rare, but he is on the mend now and hoping to get him home early next week. His Gleason was 7 (3+4). We read so much information and found out so much on here. Despite the issues he has had this week, he still strongly feels surgery was the right choice for him and it has given him a good chance of going forward cancer free. He is 62 and his op was 80% nerve sparing so we have yet to see what impact and extent post surgical problems pose!

Wishing you all the best

Debbie

User
Posted 17 Jan 2024 at 21:51
Sean, many of us here have been in the same situation and had to make their choice. There isn't a "right" answer, all the treatments have similar success rates, but there are obviously things that might influence your decision.

Your age is one, someone in their fifties is inevitably more worried about side effects that appear decades later than someone in their eighties. However if your hospital has the latest generation of radiotherapy machines the effects on surrounding tissues should be minimised.

As you say, surgery does have the advantage that radiotherapy is still an option should there be a recurrence, That happened with me - but of course I don't know whether I would have done better with radio first time. The other benefit though is that after surgery PSA should be zero, so even a small rise can be detected and acted on.

When I was first diagnosed I thought brachytherapy sounded a good option - but then it turned out my prostate was too large (and I would have had to travel a long way to access it anyway).

There is a lot of experience of the different treatments here on this forum, but all any of us can do is describe our own experiences, we can't know how the same treatment will work for you. You just have to go with what you are happy with.

User
Posted 17 Jan 2024 at 22:00

I was 52 at diagnosis. Not any easy decision. I went for surgery because the team gave me a slight nudge in that direction. Did they say anything about if they could save any of the nerves because that might give you an idea one way or the other. I guess it depends on how important sex is too you. Outcomes are similar for surgery Vs RT except at your age you may need treatment again in the future.

User
Posted 17 Jan 2024 at 22:08

Hi Sean,

 everyone here will feel for you, and recognise the situation you are facing.

 My tuppence worth is to suggest that you stand back a bit and work out whether the issue is 'out there' ( i.e. you need more information/data) or 'in here' ( i.e. you need to work out what really matters most to you, based on the information you have or might reasonably get). They call for quite different strategies. If the issue is essentially 'in here', then adding to the pile of options, opinions and information can actually become counterproductive.

As you say, you are not going to be comfortable until you have made a decision, and this is absolutely true: you have to get to get to a point where you are at peace with whatever conclusion you reach. Whatever that conclusion is, you will be living with it for a long while and you will never know what any alternative path might have led to; so take your time, irrespective of the pressure on you to agree to a treatment plan. And try not to chase the dragon of the 'right' choice: there isn't one. 

Best of luck with whatever route you take

User
Posted 17 Jan 2024 at 22:18

Hi Jim,
Thanks for your reply. The surgeon said they would hope to save the nerves, this is important as I do want to retain some element of my sex life as does my wife who is a bit younger than me.

I am really anxious about the journey ahead of me and I know that I need to make a decision but am struggling to do so.

I have always been a bit of a control freak and having to lie back and trust the specialists isn’t easy for me.

I work in a school and I’ve been into work this week but my focus isn’t great probably because I still have these options bouncing around my head.

User
Posted 17 Jan 2024 at 22:24

Hi Debbie

Thanks for your reply.

I need to make a decision as it’s taking my focus away from everything else .

I met the surgeon and oncologist last week and I thought that would help me but I left with some answers but more questions and still not decided.

I went back to work at my school this week and this has been helpful buy I am struggling to stay focused as I know I have a big decision to make.

User
Posted 17 Jan 2024 at 22:31

Hi Sean,

I can only offer advice based on what all my friends at Maggies PCa support Group tell me. None of them regret choosing surgery, in fact All of them who HAD a choice went down this route. on the other hand there are a few(including me) who wish we had the choice and would have chosen surgery. Having said that, those who have surgery have to deal with incontinence of various degrees and duration and also ED. Neither is and ‘easy’ option so take your time if you’re allowed…and why not try and speak to people who’ve had the Op by the surgeon who’ll be doing your Op. Also do some research to find out how many he has done. Men who go down the HT/RT route have to deal with many side effects but it very much seems to depend on the individual. Some get off lightly, others (like me😟) seem to have just about every side effects going…and more!
If you’ve got a local PCa Group, go along to it and speak to the guys there, I think it might help you come to your decision.

All the best whatever you decide.

Derek

User
Posted 17 Jan 2024 at 22:49

Hi Sean

I was in the same position as you last August. I was diagnosed 3+4=7, tumours in both sides, 11 cores from 20 were positive. I was recommended surgery, but when my results were checked at a different hospital for a meeting with the surgeon, they reckoned I was actually 3+3=6 like you. At this point they offered me the chance of Active Surveillance as an option. Is this something you are able to consider? It may only be delaying the inevitable, but could mean more time (possibly quite a while) before having to put up with the side effects of whichever treatment we opt for?

Good luck mate, with whatever you decide.

Ian.

User
Posted 17 Jan 2024 at 23:02

Originally Posted by: Online Community Member

Thanks Steve

I am edging towards surgery but massively nervous about the potential likely side effects as well as being anxious about the surgery itself

My concerns about radiotherapy / brachytherapy are more about potential long term side effects and if there is a reoccurrence (which I hope there wouldn’t be) less options for further treatment

I feel in limbo and that I won’t be able to start moving forwards both physically and emotionally until I have made up my mind

 

 

 

it’s a horrible feeling being in limbo, and even when you decide there are what ifs… 

 

my husband has Gleason 6 and AS was an option,which he felt wasn’t for him,  he’s decided on RT and having had lots of time to consider he just wants to get on with it and starts soon all being well.

I just wanted to say we were concerned that if he had RT and there was a recurrence there was no surgical option, yet surgery seemed daunting for G6. We were reassured by the oncologist who said he was confident with this grade there would be a cure and no recurrence. 

however, my husband is 66, and age I am aware does affect decision making and MDT recommendations. 

all I can say is ask the surgeon and oncologist everything that is on your mind, be guided by their experience. But only you can decide what’s right for you. Good luck. 

User
Posted 18 Jan 2024 at 08:25

Weren't you offered active surveillance ? (AS)

User
Posted 18 Jan 2024 at 08:35

I think your instinctual hesitation is correct and that you should not be pushed into anything 3+3 is considered a pre cancerous condition and not actually cancer by a growing number of medical professionals in US  some even want it reclassified due to overtreatment bc after treatment your sex life may never be the same again and if that is important to you then you shouldnt rush your decision 

You could meanwhile go on an anti inflammatory diet include more soya and phytoestrogens 

User
Posted 18 Jan 2024 at 08:40

Originally Posted by: Online Community Member

Weren't you offered active surveillance ? (AS)

On the bare facts we've been given you would have thought AS was an option. Especially as the NICE guidelines amendments 2021 are suggesting more men with localised, low grade/volume/Gleason score should consider AS as opposed to radical treatments.

 

User
Posted 18 Jan 2024 at 08:44

The MDT meeting has suggested surgery

I asked about AS and they mentioned that the volume in the biopsy was over 50% so that may be why they were steering me away from that

Is it possible to get a second opinion on the MRI / biopsy easily and without upsetting the consultant who may be operating on me ?

User
Posted 18 Jan 2024 at 12:38

Its a tough one. Eventually I went for surgery with a well recognised surgeon. Was nervous as hell but relieved when it was done and he said it had gone well. Apart from the obvious( dry orgasms) felt fully recovered 12 months down the line. Good luck with your decision

User
Posted 21 Jan 2024 at 07:52
If you do go for the RT/HT route, as I did - back in 2019 - my main advice, is to abide 100% to the diet guidance - which reduces "Wind" to a low level & helps more accurate targeting of the Radio therapy.

No type of treatment, will be the best, as they all will have some side-effects - it's your choice sometimes.

User
Posted 21 Jan 2024 at 08:22

I hadn’t come across this tool before. Very useful for comparison of treatment effectiveness and side effects. My thanks to the poster “How?” above.

https://prostate.predict.nhs.uk/tool

 
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