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Treatment options dilemma

User
Posted 13 Feb 2021 at 11:18

I've just been diagnosed and have to choose between surgery or radiotherapy.  I am 70 and never had major surgery before so find that quite scary. So initially I was leaning towards radiotherapy. My urologist has now put me on bicalutamide and in 2 weeks my gp will give me the hormone injection. However I already have a few aches and pains in muscles and joints which may be early onset arthritis. This was the original reason I went to my gp  a few months ago and it was only a routine blood test which showed a prostate problem.  As I'm reading more about hormone therapy side effects I'm now beginning to wonder if surgery might be a better option even though I'm so apprehensive. My wife thinks surgery but she's  had a few ops and is braver than me !  I'd really appreciate any advice on this . 

User
Posted 15 Feb 2021 at 16:13
It is sometimes the case that clinicians are not happy referring patients for a form of treatment not at their hospital and I really would check out Brachytherapy (there are 2 kinds, high and low dose, temporary placement of probes during an operation or permament placing of radioactive seeds which lose their radio active output over time.) Either of these forms of Brachytherapy can if thought advisable be supplemented by some EBRT. For suitable patients, Bracytherapy seems to be becoming an increasingly popular form of radiotherapy for suitable men although for other men EBRT which has been refined in recent years may still be a better option. It's a bit like horses for courses.

Your first radical treatment is the most important one (hopefully your only one), so it makes sense to fully consider your preferences, of course being mindul of what your consultant's say about your suitability.
Barry
User
Posted 16 Feb 2021 at 00:57

Apparently, 1 in 3 men in Scotland have a recurrence


https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/prostate-cancer#treating-prostate-cancer 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Feb 2021 at 13:56

Hi Tony,


There are plenty of discussions like this on here.  I recognise your worry about surgery as I'd never had a full anaesthetic.  It was almost a luxury to be asleep for 2hrs and wake up with no prostate and no cancer, touch wood. 


Most say there is little difference in outcome and I read on here that RT is better if you have suspect stray cells in the area.  Also if you have a weak heart as the operation slants you head down.


I have no regrets and as for side effects the incontinence soon went but the surgeon said he was going to take the nerves on one side so my erection wouldn't be as good without the help of tablets or other, which is true enough.


I also had very painful arthritis in my hip which I was convinced for months was the spread of the disease until it went on so long and my psa kept coming back as undetectable. The doctor said I couldn't have such low psa for so long if it was related to prostate cancer.  The arthritis went after about 9 months.


I don't really want to be pushing an option, I've written quite a bit on my profile and in a website I've linked on there.  Although it's heavy going more like a rambling diary done during diagnosis and treatment.


All the best, Peter

User
Posted 13 Feb 2021 at 16:20
I went down the HT/RT road and found it all quite straightforward. No side-effects that were too onerous.

Best wishes,

Chris
User
Posted 13 Feb 2021 at 17:41

Hi Tony,


I was diagnosed at 70 with PSA 2.19 Gleason 3+4=7 and 5 out of 20 cores positive.I had choice of Robotic surgery or Brachytherapy and went for brachytherapy as i felt the side affects sounded better and less intrusive and i had never had any big operations.


Four years on i am doing well with PSA at 0.08 and have been signed off by my specialist .If you click on my Avatar you can see my journey so far.


I am happy to answer any questions but i don't think i should advise you to go one way or the other as i think it is a  personal choice  and  you have 50/50 chance with no Guarantees.


  Good luck John.

User
Posted 14 Feb 2021 at 13:30

Hi Tony,


It could be that your Gleason was 4+3=7  and mine was 3+4=7 so more level 4 positive cores than the 3.


The first specialist i spoke to in the Lister hospital offered me Robotic removal and started to go through it with me expecting me to accept it there and then but i asked if i could see the Brachytherapy specialist that was at the hospital at the same time so he agreed and said come back to see him afterwards.


The Brachytherapy specialist looked at my notes and said there was no reason in his view why Brachytherapy could not do the job but i would have travel to his hospital at The Mount Vernon Hospital.


John.

User
Posted 14 Feb 2021 at 18:18
One point to consider is that a significant proportion of men who have surgery require follow-up RT, so you end up with two sets of side-effects rather than one. I was actually recommended to go for RT, but had I been given the choice I would have gone for it anyway because of that.

Chris
User
Posted 14 Feb 2021 at 21:58
OTOH the significant proportion of men who have RT and need follow up treatment can't always have surgery.

I was 68 last year when I had my RARP. I didn't really have a choice, due to having colitis (albeit mild), but probably would have chosen surgery anyway. But then I'd already had two surgical operations in the last few years while my wife had RT for cancer some years ago which hadn't gone well.

Basically things are fine except for the ED, as it could only be nerve-sparing one side. The positive of RP is that it's all over and done with quite quickly.

One thing I would say - I wouldn't go for surgery unless you're reasonably fit, e.g. you're not obese and you don't smoke. But I'm guessing that if they're offering you surgery at 70 then that's not an issue.
User
Posted 15 Feb 2021 at 20:10

According to this article on the US NIH website, around 60% of men who have an RP experience a biochemical relapse and require follow-up treatment.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860423/

Edited by member 15 Feb 2021 at 20:12  | Reason: Not specified

User
Posted 16 Feb 2021 at 21:47
That's about the same % (33%) as I saw in those nomograms somebody posted a few weeks ago; when I checked for my age at surgery (68) with Gleason 3+4, T2 it showed 33% have a recurrence within 15 years (most of whom are in the first 5). RT was a little lower I think, around 30-31%. In terms of life expectancy they were the same.

HDR beat both handsomely, although there's less data, particularly for the longer term. Still, if I was looking and could have HDR, I'd go there first, ahead of RT.
User
Posted 17 Feb 2021 at 15:39

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
One point to consider is that a significant proportion of men who have surgery require follow-up RT, so you end up with two sets of side-effects rather than one. I was actually recommended to go for RT, but had I been given the choice I would have gone for it anyway because of that.

Chris


 


What is a  "significant proportion" and please can you tell us the source of that information?



When I was having my RT in Addenbrooks, there were quite a few being treated with RT after having their Prostate removed.

User
Posted 22 Feb 2021 at 11:30

Hi Tony


I was faced with the same dilemma in November, being offered (non-nerve sparing) surgery or hormone and radiotherapy.  I spent days reading up on both options, doing research, asking questions and speaking to people who had undergone wither pathway, including hers on the PCUK Forum.


I found it was important to speak to each specialist oncologist as they gave additional information I did not get at the initial diagnosis.  For surgery, I was told there was a 50% chance I would have to go on and have radiotherapy as there was the likelihood of the prostate bed still being infected after surgery.


You also need to take care who you speak to about the side effects of hormone and radiotherapy as the treatments have improved considerably in the last 2-3 years and, generally, people experience less side effects than those undergoing treatment earlier than this.


I concluded that the side effects from a prostatetectomy were highly likely and pretty permanent; I did not like the idea of wearing pads or convenes as this does not suit my naturist lifestyle.  OTOH the side effects from hormone and radiotherapy are more or less likely depending on the individual and tend to be temporary.  So I opted to take my chances and fingers crossed the side effects will not impact on my life to any great extent.


Three months in after starting on Bicalutamide (for 4 weeks) and Decapeptyl the only side effects (so far) are overheating (3-5 times at night and 1-3 times during the day), dry mouth and muscle ache in left or right arm., all now daily occurances.    I can put up with these but may ask GP if there is any medication that can reduce/address the overheating and muscle ache.


Start radiotherapy at the end of March so will know what side effects decide to kick in then.


Good luck with your decision.


John

User
Posted 22 Feb 2021 at 13:14

Hello there. 


My story 


Diagnosed Oct 19.  64 yes old fit active,no symptoms Psa 6.1. Gleeson 7


I opted for surgery.  Never had surgery, been in hospital, had anaesthetic before.


Due to covid didnt get my surgery till 29 July 20.


No after effects post surgery. Walking with catheter after 3 days. No pain ,issues with catheter. 


Walking further 3-4 km after 3 weeks,  running, jogging 3km after 6 weeks.  Back to work late oct 20.


No issues since. Minimal use of pads for incontinence after 4 weeks.  Hardly any dribble nowadays. 


I was more concerned of going into hospital with covid around and having anaesthetic than the surgery. I need not have worried.


Difficult decisions, but I dont regret having surgery. 


What I would say is get yourself fit for surgery, physical and mental.  Do the exercises and every day, they really do make a difference 


 


Take care 


Tony ,telford 

User
Posted 22 Feb 2021 at 18:09
Hi Tony & John. I think the least risk, is HT & RT.
Yes, it takes a lot longer, I've been there - done that, & survived.
Feeling a lot more my old self, I''m now 72 BTW No regrets at all, of the route I took.
They were great at Addenbrooks in Cambridge.

Being hacked about, never held any appeal for me.
But, you pays the money & take your choice.
Bob
Show Most Thanked Posts
User
Posted 13 Feb 2021 at 13:56

Hi Tony,


There are plenty of discussions like this on here.  I recognise your worry about surgery as I'd never had a full anaesthetic.  It was almost a luxury to be asleep for 2hrs and wake up with no prostate and no cancer, touch wood. 


Most say there is little difference in outcome and I read on here that RT is better if you have suspect stray cells in the area.  Also if you have a weak heart as the operation slants you head down.


I have no regrets and as for side effects the incontinence soon went but the surgeon said he was going to take the nerves on one side so my erection wouldn't be as good without the help of tablets or other, which is true enough.


I also had very painful arthritis in my hip which I was convinced for months was the spread of the disease until it went on so long and my psa kept coming back as undetectable. The doctor said I couldn't have such low psa for so long if it was related to prostate cancer.  The arthritis went after about 9 months.


I don't really want to be pushing an option, I've written quite a bit on my profile and in a website I've linked on there.  Although it's heavy going more like a rambling diary done during diagnosis and treatment.


All the best, Peter

User
Posted 13 Feb 2021 at 14:25
Thanks for that , Peter. I'd never had general anaesthetic until my biopsy in December and it went better than I expected. I think it's the post-surgery incontinence problem which also concerns me . Not an easy decision at all.
User
Posted 13 Feb 2021 at 16:20
I went down the HT/RT road and found it all quite straightforward. No side-effects that were too onerous.

Best wishes,

Chris
User
Posted 13 Feb 2021 at 17:41

Hi Tony,


I was diagnosed at 70 with PSA 2.19 Gleason 3+4=7 and 5 out of 20 cores positive.I had choice of Robotic surgery or Brachytherapy and went for brachytherapy as i felt the side affects sounded better and less intrusive and i had never had any big operations.


Four years on i am doing well with PSA at 0.08 and have been signed off by my specialist .If you click on my Avatar you can see my journey so far.


I am happy to answer any questions but i don't think i should advise you to go one way or the other as i think it is a  personal choice  and  you have 50/50 chance with no Guarantees.


  Good luck John.

User
Posted 14 Feb 2021 at 11:16
Thanks Chris and John. I asked about brachytherapy but the Urologist didn't think it was appropriate for me for some reason. My local hospital didn't do it anyway and I'd have to go to another clinic some 40 miles away. I think part of the problem is having the choice. Up til now I've just followed orders, so to speak, with blood tests, scans, biopsies. And now the doctors remain impartial as they must whilst you decide for yourself.
User
Posted 14 Feb 2021 at 13:30

Hi Tony,


It could be that your Gleason was 4+3=7  and mine was 3+4=7 so more level 4 positive cores than the 3.


The first specialist i spoke to in the Lister hospital offered me Robotic removal and started to go through it with me expecting me to accept it there and then but i asked if i could see the Brachytherapy specialist that was at the hospital at the same time so he agreed and said come back to see him afterwards.


The Brachytherapy specialist looked at my notes and said there was no reason in his view why Brachytherapy could not do the job but i would have travel to his hospital at The Mount Vernon Hospital.


John.

User
Posted 14 Feb 2021 at 18:18
One point to consider is that a significant proportion of men who have surgery require follow-up RT, so you end up with two sets of side-effects rather than one. I was actually recommended to go for RT, but had I been given the choice I would have gone for it anyway because of that.

Chris
User
Posted 14 Feb 2021 at 21:58
OTOH the significant proportion of men who have RT and need follow up treatment can't always have surgery.

I was 68 last year when I had my RARP. I didn't really have a choice, due to having colitis (albeit mild), but probably would have chosen surgery anyway. But then I'd already had two surgical operations in the last few years while my wife had RT for cancer some years ago which hadn't gone well.

Basically things are fine except for the ED, as it could only be nerve-sparing one side. The positive of RP is that it's all over and done with quite quickly.

One thing I would say - I wouldn't go for surgery unless you're reasonably fit, e.g. you're not obese and you don't smoke. But I'm guessing that if they're offering you surgery at 70 then that's not an issue.
User
Posted 15 Feb 2021 at 12:07
Many thanks for the replies. If I was 10 years younger I'd probably choose surgery. At present I seem to be drifting towards HT/RT . If the hormone therapy causes loads of side effects then this may change my opinion.
User
Posted 15 Feb 2021 at 16:13
It is sometimes the case that clinicians are not happy referring patients for a form of treatment not at their hospital and I really would check out Brachytherapy (there are 2 kinds, high and low dose, temporary placement of probes during an operation or permament placing of radioactive seeds which lose their radio active output over time.) Either of these forms of Brachytherapy can if thought advisable be supplemented by some EBRT. For suitable patients, Bracytherapy seems to be becoming an increasingly popular form of radiotherapy for suitable men although for other men EBRT which has been refined in recent years may still be a better option. It's a bit like horses for courses.

Your first radical treatment is the most important one (hopefully your only one), so it makes sense to fully consider your preferences, of course being mindul of what your consultant's say about your suitability.
Barry
User
Posted 15 Feb 2021 at 18:48

Originally Posted by: Online Community Member
One point to consider is that a significant proportion of men who have surgery require follow-up RT, so you end up with two sets of side-effects rather than one. I was actually recommended to go for RT, but had I been given the choice I would have gone for it anyway because of that.

Chris


 


What is a  "significant proportion" and please can you tell us the source of that information?

User
Posted 15 Feb 2021 at 20:10

According to this article on the US NIH website, around 60% of men who have an RP experience a biochemical relapse and require follow-up treatment.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860423/

Edited by member 15 Feb 2021 at 20:12  | Reason: Not specified

User
Posted 15 Feb 2021 at 21:04

Originally Posted by: Online Community Member


According to this article on the US NIH website, around 60% of men who have an RP experience a biochemical relapse and require follow-up treatment.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860423/


  Thank you.

User
Posted 16 Feb 2021 at 00:57

Apparently, 1 in 3 men in Scotland have a recurrence


https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/prostate-cancer#treating-prostate-cancer 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Feb 2021 at 21:47
That's about the same % (33%) as I saw in those nomograms somebody posted a few weeks ago; when I checked for my age at surgery (68) with Gleason 3+4, T2 it showed 33% have a recurrence within 15 years (most of whom are in the first 5). RT was a little lower I think, around 30-31%. In terms of life expectancy they were the same.

HDR beat both handsomely, although there's less data, particularly for the longer term. Still, if I was looking and could have HDR, I'd go there first, ahead of RT.
User
Posted 16 Feb 2021 at 21:59

Originally Posted by: Online Community Member


Apparently, 1 in 3 men in Scotland have a recurrence


https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/prostate-cancer#treating-prostate-cancer 


 


Agree.


Of both RT and RP


Ie 66% recurrence free at 10 yrs.


The up to 60% could be seen as misinterpreted for someone just reading this post in my opinion.


Up to 60% .. at what point .. 15yrs, ? 20 yrs after original intervention.


Interesting link, that indicates 0.5% over 65's die from surgery ? Seems quite high.


 


Regards Gordon


 


 


User
Posted 17 Feb 2021 at 10:17

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


Apparently, 1 in 3 men in Scotland have a recurrence


https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/prostate-cancer#treating-prostate-cancer 


 


Agree.


Of both RT and RP


Ie 66% recurrence free at 10 yrs.


The up to 60% could be seen as misinterpreted for someone just reading this post in my opinion.


Up to 60% .. at what point .. 15yrs, ? 20 yrs after original intervention.


Interesting link, that indicates 0.5% over 65's die from surgery ? Seems quite high.


 


Regards Gordon


 


 



I'm always suspicious when the words "up to " are used in anything (as in "up to 50% off this sale"!)  Both 1% and 60% falls into that category. It doesn't show the distribution within that 60%, and that can be misleading.

User
Posted 17 Feb 2021 at 10:35
The distribution in that particular research was 27% to 60% I think. Obviously the range is affected by the broad range of diagnoses - 27% of men with a T1a had biochemical recurrence and 60% of men with a T2c/T3a had a BR, but positive margin was distributed evenly across the groups and some of those T3 men will have gone into their op knowing that they would also need RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2021 at 15:39

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
One point to consider is that a significant proportion of men who have surgery require follow-up RT, so you end up with two sets of side-effects rather than one. I was actually recommended to go for RT, but had I been given the choice I would have gone for it anyway because of that.

Chris


 


What is a  "significant proportion" and please can you tell us the source of that information?



When I was having my RT in Addenbrooks, there were quite a few being treated with RT after having their Prostate removed.

User
Posted 22 Feb 2021 at 11:30

Hi Tony


I was faced with the same dilemma in November, being offered (non-nerve sparing) surgery or hormone and radiotherapy.  I spent days reading up on both options, doing research, asking questions and speaking to people who had undergone wither pathway, including hers on the PCUK Forum.


I found it was important to speak to each specialist oncologist as they gave additional information I did not get at the initial diagnosis.  For surgery, I was told there was a 50% chance I would have to go on and have radiotherapy as there was the likelihood of the prostate bed still being infected after surgery.


You also need to take care who you speak to about the side effects of hormone and radiotherapy as the treatments have improved considerably in the last 2-3 years and, generally, people experience less side effects than those undergoing treatment earlier than this.


I concluded that the side effects from a prostatetectomy were highly likely and pretty permanent; I did not like the idea of wearing pads or convenes as this does not suit my naturist lifestyle.  OTOH the side effects from hormone and radiotherapy are more or less likely depending on the individual and tend to be temporary.  So I opted to take my chances and fingers crossed the side effects will not impact on my life to any great extent.


Three months in after starting on Bicalutamide (for 4 weeks) and Decapeptyl the only side effects (so far) are overheating (3-5 times at night and 1-3 times during the day), dry mouth and muscle ache in left or right arm., all now daily occurances.    I can put up with these but may ask GP if there is any medication that can reduce/address the overheating and muscle ache.


Start radiotherapy at the end of March so will know what side effects decide to kick in then.


Good luck with your decision.


John

User
Posted 22 Feb 2021 at 12:13
Thanks for your reply , John. I seem to be coming to the same conclusions as yourself. I have now started Bicalutamide and have my first injection of Prostap on Wednesday so I'll see how it goes from there. Incredibly difficult decision but no point waiting anymore. It is now 6 months since my first blood test which showed a prostate problem. I have really appreciated all of the replies on here and also local members who contacted me about my local hospital options. It's support like this that helps you get through it.
User
Posted 22 Feb 2021 at 13:14

Hello there. 


My story 


Diagnosed Oct 19.  64 yes old fit active,no symptoms Psa 6.1. Gleeson 7


I opted for surgery.  Never had surgery, been in hospital, had anaesthetic before.


Due to covid didnt get my surgery till 29 July 20.


No after effects post surgery. Walking with catheter after 3 days. No pain ,issues with catheter. 


Walking further 3-4 km after 3 weeks,  running, jogging 3km after 6 weeks.  Back to work late oct 20.


No issues since. Minimal use of pads for incontinence after 4 weeks.  Hardly any dribble nowadays. 


I was more concerned of going into hospital with covid around and having anaesthetic than the surgery. I need not have worried.


Difficult decisions, but I dont regret having surgery. 


What I would say is get yourself fit for surgery, physical and mental.  Do the exercises and every day, they really do make a difference 


 


Take care 


Tony ,telford 

User
Posted 22 Feb 2021 at 18:09
Hi Tony & John. I think the least risk, is HT & RT.
Yes, it takes a lot longer, I've been there - done that, & survived.
Feeling a lot more my old self, I''m now 72 BTW No regrets at all, of the route I took.
They were great at Addenbrooks in Cambridge.

Being hacked about, never held any appeal for me.
But, you pays the money & take your choice.
Bob
User
Posted 24 Feb 2021 at 12:10

I'm 74, fairly active, and do a few weights and exercises. 


I've just been told my psa has gone from 10.5 to 13.7 in six months. I had an MRI about 18mnths ago where the consultant found an area of 'concern'. I was supposed to go for another one about this time last year, but Covid put paid to that. I'm down for another MRI in the next couple of weeks, but this is seemingly to assist with a biopsy, with a local as I can't do full anaesthetics. Can't wait. My heart once stopped for 7 minutes during a biopsy in my throat and a later solution, a 'light' full med, put me in ICU for a couple of days, and out for the count for four days. 


It's the altrnatives I'm interested in for obvious reasons. I've read various material, but I was wondering about any recent advantages of non-invasive treatments and, obvioulsy, survival rates. I know I'm going to die of something, and not that far in the future, so delays might interest me.


Any links, advice or reassurance would be gratefully received. 

User
Posted 24 Feb 2021 at 12:14

I think it would be wise to wait and see whether you do have prostate cancer before doing too much research on treatment options - there are less invasive options that need only local anaesthetic and might be suitable if the tumour is small. Surviving the biopsy unscathed seems to be your most pressing issue - but I am sure it will  be fine!

Edited by member 24 Feb 2021 at 12:15  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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