Hi Davemac,
You have had 3 replies from people who have had surgery, and decho who has had RT but would have chosen surgery.
This post is to give you a balance of replies. I would have chosen surgery, but I did not get the choice, for me RT was the only treatment on offer (Decho also found himself in this position).
Our individual stories are of value, in how we decided our treatment, how we dealt with the effects of it, but what we post about the success or failure of our treatment should be discarded. I am five years post treatment with a PSA <0.1, but prostate cancer can come back at anytime, due to micro metastasis. Pratap, 13 years post surgery with a PSA <0.003, is almost certainly cured, I and everyone else are better described as in remission. Your chance of a successful outcome is about 70% from surgery or RT, irrespective of our outcomes, so there is no point in making your choice based on what you think gives you the best chance of cure because for you they are equal (for me they were not equal, that is why I did not get a choice).
The notion that surgery gives you a backup option of RT has very little value, if RT works as your salvage treatment, then it would have worked as your primary treatment, and you put yourself through needless surgery.
Because the chance of success of either treatment is equal, the biggest consideration should be side effects. Your age and life expectancy are very important, the side effects of surgery are usually immediate or never, and recovery varies between about a year or never (the probability of incontinence or erectile dysfunction, you will have to ask your surgeon).
The side effects of RT, erectile dysfunction, incontinence and secondary cancer, are less probable than from surgery and likely to be at least a decade or two later.
Hormone therapy (HT) is usually given with RT it may be recommended for two years, the side effects can be quite troublesome (look them up), they usually stop within a year of stopping HT.
Your age, life expectancy and other conditions are essential for balancing the importance you place on these side effects. At 70 your chances of living long enough to suffer adverse effects from RT are tiny.
If you have HT and are not fully recovered from that til you are 73, then you have lost a good bit of fun from the 15 years or so you had to live.
If you are incontinent after surgery, and don't recover you may have another 15 years of incontinence to deal with.
Given the choice I would have chosen surgery, I was forced in to RT and HT. I am very glad my hand was forced. My results and requirements of life may bare no relation to yours, so you have to make your decision.
I hope I have not misrepresented any of the other posters on this forum, and when I don't agree with them, it doesn't mean they are wrong, it just means I would make different choices for my life, not theirs.
As we are on a star trek theme, I'll quote Bone's comments on 20th century surgery. "Put away your butchers knives and let me save this patient".
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User
Originally Posted by: Online Community MemberThe notion that surgery gives you a backup option of RT has very little value, if RT works as your salvage treatment, then it would have worked as your primary treatment, and you put yourself through needless surgery.
Dave, it's nice to have an alternative viewpoint and your post was spot on except that I would comment on the above statement. Although some people, due to the cancer spread, have no choice but to go down the HT/RT route, when surgery is an option it should (I believe) be the preferred option unless the side effects of ED are so psychologically damaging to the patient to make the alternatives favourable.
Remembering that all of the results of tests, scans and biopsies are guesstimates based on samples, there is a possibility that the chosen treatment may not be 100% successful. In my case the Gleason 7 became Gleason 9 on the lab bench.
The backup of being able to go back for RT/HT treatment down the road if there is a reoccurrence down the road is available for post RARP patients with focussed targets on specific areas rather than bombarding the entire prostate and bed. Lower doses, quicker timeframes and less side effects.
Brachytherapy which is another option that may be offered also causes changes to the prostate which then means any subsequent RP surgery becomes significantly more difficult (my consultants words) if it is needed.
I don't think there is a 'right' choice for anyone - we decide based on what treatments are offered, how we think we can cope with side effects etc etc and we hope that we have made the right decision. With hindsight we have 20:20 vision and only then know whether we made the 'right' choice, but as long as we have the condition cured or managed then we have progressed.
User
Hello All
I have joined here as I have just been diagnosed. Had my consultant consultation this morning and advise I have a Gleaning Level 7 which is not as bad as I was expected. So I am here to maybe find out others experiences and such like. I have been offered 3 options which as a family we are considering. So would be interested to see how others came up with a decision.
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Hi Dave, Steve and Decho (FYI)
On the whole, as always, excellent posts from you all but I wonder if all four of us are unintentionally confusing Davemac!.
I was and I am always very careful in my response to questions about what treatment an individual should pick. I was simply telling Davemac my story because his situation, as far as I could tell from his post and profile, is very similar to mine was. Nowhere I have suggested that he should choose prostatectomy. The penultimate sentence in my post makes it clear that the choice is his and he needs to be confident in his choice and I am sure we all wish him luck.
All three of you, if I am correct in interpreting your posts, are either pleased or wished you had a choice of surgery. - that is how I interpret your views. Am I right?
I feel very conscious of the fact that I have been very lucky, so far, and don't wish to appear smug. My wife often says to me to be careful how and what I write; occasionally I ask her to edit my posts. The great benefit of this forum is that anyone faced with prostate cancer can be confident that their privacy will be respected and can reveal their most intimate fears and how they are handling or not their problems.
When I was diagnosed I had no help at all and we were in utter dispair. Robotic surgery was in its infancy in the UK and I was taking a great risk, so it seemed at the time. My reason for contributing here is to tell desperate men and their wives/partners that even if your situation appears hopeless there is a treatment to suit them.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Peter, I think some of this comes down to what might cause recurrence after each of the treatments.
A prostatectomy is an easy one - there's a sharp edge to the treatment which is literally the surgeon's scalpel cut. If there's cancer outside that, due either to the cancer bridging that barrier (positive margins) or due to mets, then there will be recurrence. There are a couple of cases here, the first and most common is when PSA dropped very low or undetectable following the RP, but then slowly rose, and that's due to micro-mets outside the prostate (too small to show on scans), which have continued growing. The second case is where the PSA didn't go very low following the RP, and that's a more significant met which wasn't spotted before the RP - this is rarer. There's also the very occasional instance of the prostate being accidentally cut in to and cancer cells leaking out from inside before it's removed, but we can probably ignore that one on account of it being very rare.
For external beam radiotherapy, there are two causes of failure, recurrence in the treatment area, which is quite rare, or again some cancer outside the treatment area which wasn't spotted before the EBRT.
However, it helps to understand what the treatment area is. The EBRT will treat the whole prostate and a few mm outside at the dose required to kill the kill the cancer. However, because of the way EBRT is delivered, the treatment doesn't stop at that boundary, but the dose delivered reduces as you move away from the prostate. That means the prostate bed was also treated, so that will have killed the micro-mets (which don't seem to need such a high dose anyway) in the prostate bed which are the most common cause of recurrence if RP when been used. Mets or micro-mets significantly further from the prostate won't have been treated and would cause recurrence, but that would be the case for either treatment.
So the EBRT has a benefit when there are micro-mets just outside the prostate as it will catch those too, which is probably the most common cause of recurrence after RP.
What is the risk of micro-mets in the prostate bed? This seems to increase with the increased risk of diagnosis. High risk is denoted by staging ≥ T3 (some say ≥ T2c), or Gleason > 7, or PSA ≥ 20. I've seen a suggestion that there's a good correlation between the number of high risk factors you have (0, 1, 2, 3) and the chance of recurrence after RP. Perineural invasion (PNI) is also a theoretical risk for this, since the nerve sheaths provide a route for spread out through the prostate capsule, although I don't know what the correlation between PNI and prostate bed recurrence is in practice.
Of course, this is only one of many factors you might take in to consideration. Another factor for me was that surgery was unlikely to be nerve sparing, so I had a better chance of retaining erectile function with RT, and indeed I have, but that wasn't a given - there was still a risk of losing it.
Another fctor I mentioned before is for very young men needing treatment, and therefore hoping for many decades of remission which is a challenge for any one treatment. In this case, choosing a curative treatment which can be followed by another curative treatment is a more significant consideration. Also, the increased risk of radiotherapy induced cancers is a factor to consider if you're still expecting to be alive in many decades, even though treatments will be quite different by then.
User
Thankyou Pratap. Your post was very informative and useful. As was all the others. What is clear is when it comes down to it the choice is mine and my good lady Mandy. You and the others have helped me make that decision so much easier.
I will be going down the surgery route as in my head I just want to get the thing out of me. Anything after that I will have to deal with.
Kind regards to you all.
Life long and prosper.
Show Most Thanked Posts
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Hi Dave,
Consider yourself lucky that you’ve been given a choice, even though it’s not an easy one to make. Once you e made it however you will feel much better.
My advice would be if there is a Prostate Cancer Support Group near you(such as Maggies), go along and talk to other men who have been through treatment to get an idea of what might be best for you.
My view from talking to others is that if you can’t find a good reason not to go for surgery then that is the best option. Such reasons might be…
1. you are in a physical job which for which it might be difficult to take time off to recover from surgery.
2. Possible Loss of sexual function is too much to bear.
in My Maggies Group I’ve not met anyone who regrets having surgery, although that’s not to say that’s the best option for you.
Good luck with your decision!
derek
User
I was also diagnosed as Gleason 3+4=7 at biopsy and decided on the RARP knowing of the incontinence and ED issues - I wanted the mothership out of me and could live with the side effects.
However, after the RARP it was reclassified as 4=5=9 - the biopsy is a guesstimate based on samples. As the cancer had started to spread outside the prostate I am extremely glad that I chose the surgery route rather than the brachytherapy.
Post op I am PSA < 0.01 so all OK - if anything appears again then I still have the option of HT/RT.
User
Hi, I was told it was near the edge so I was keen to get it out. I'd also had skin cancer and been strongly advised cutting out was the gold standard. Although people say you can't compare the two as you can choose a margin with skin cancer.
I don't know if I'd have gone for RT and hormones otherwise. I was thinking if it went wrong I could still have RT as Steve wrote. RT seems less invasive but with surgery it's done in 2 hours although with 6 weeks healing. RT and hormones can be 6 months and up to another 12 months to know it worked.
Post Op my Gleason was upgraded to 4+4 from 4+3. That was 7yrs ago. Since then RT has got more accurate and can be aimed more precisely and at separate places. There are more hormone options and Brachtherapy of different types.
Bed time, hope that helps.
Regards Peter
Edited by member 18 Aug 2023 at 23:52
| Reason: Not specified
User
Thank you guys for your quick and honest replies. It was reassuring to hear your positive words and will take on board all that you have said.
I expect I will opt for the surgery as like others I want to get it out of me. The side effects I will have to manage but hopefully I am lucky and they are not too severe.
I have never heard of Maggies, so I will check and see if there is a group in Plymouth.
I keep the site posted with my progress.
May you all live long and prosper
User
Nanu Nanu Shazbot
:)
Good luck with your decision - talk with your partner and family as communication is key.
User
Hi Davemac(L)
You have already had some very good advice. I agree with Decho.
Having just viewed your profile your situation is remarkably similar to mine. When diagnosed I was 71, happily married, with two adult children and three grand children. My Gleason score was 7 (4+3, 3+4), cancer was well defined and with clear margins. I was/am very fit with no other health conditions and we enjoyed an active sex life which we obviously wished to continue. We consulted an outstanding urologist with a lot of experience who was happy to perform robotic prostatectomy but also insisted that we consult others experts which we did. We chose surgery knowing the risks: incontinence and/or ED. The surgery was successful although a little complicated and lasted 6 hours - post-surgery biopsy indicated that the prostate gland showed very clear margins. I am now 99.9% continent; I leak when sexually excited and when getting up from a squatting position. Before the surgery my erections were getting weaker because of my age and we knew that ED will be an issue - in spite of what you may read and hear there is evidence that generally, particularly for older men, the erectile function always suffers some level of deterioration. After recovery we decided not to rely on drugs like Viagra or undergo any further invasive surgery to restore my erectile function and opted for VEDs (Vacuum Erection Devices) to re-establish our sex life. I am now 84 (my wife is 79); I am very lucky that my PSA has remained stable at <0.003 since the surgery. Our intimate life has a new normal with unexpected benefits. You have a tough decision to make and I wish you good luck because that is what you need whichever treatment you choose. You may be interested to read how we re-established our sex life in the following link:
https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life
Edited by member 19 Aug 2023 at 10:25
| Reason: Spelling errors
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Hi Davemac,
You have had 3 replies from people who have had surgery, and decho who has had RT but would have chosen surgery.
This post is to give you a balance of replies. I would have chosen surgery, but I did not get the choice, for me RT was the only treatment on offer (Decho also found himself in this position).
Our individual stories are of value, in how we decided our treatment, how we dealt with the effects of it, but what we post about the success or failure of our treatment should be discarded. I am five years post treatment with a PSA <0.1, but prostate cancer can come back at anytime, due to micro metastasis. Pratap, 13 years post surgery with a PSA <0.003, is almost certainly cured, I and everyone else are better described as in remission. Your chance of a successful outcome is about 70% from surgery or RT, irrespective of our outcomes, so there is no point in making your choice based on what you think gives you the best chance of cure because for you they are equal (for me they were not equal, that is why I did not get a choice).
The notion that surgery gives you a backup option of RT has very little value, if RT works as your salvage treatment, then it would have worked as your primary treatment, and you put yourself through needless surgery.
Because the chance of success of either treatment is equal, the biggest consideration should be side effects. Your age and life expectancy are very important, the side effects of surgery are usually immediate or never, and recovery varies between about a year or never (the probability of incontinence or erectile dysfunction, you will have to ask your surgeon).
The side effects of RT, erectile dysfunction, incontinence and secondary cancer, are less probable than from surgery and likely to be at least a decade or two later.
Hormone therapy (HT) is usually given with RT it may be recommended for two years, the side effects can be quite troublesome (look them up), they usually stop within a year of stopping HT.
Your age, life expectancy and other conditions are essential for balancing the importance you place on these side effects. At 70 your chances of living long enough to suffer adverse effects from RT are tiny.
If you have HT and are not fully recovered from that til you are 73, then you have lost a good bit of fun from the 15 years or so you had to live.
If you are incontinent after surgery, and don't recover you may have another 15 years of incontinence to deal with.
Given the choice I would have chosen surgery, I was forced in to RT and HT. I am very glad my hand was forced. My results and requirements of life may bare no relation to yours, so you have to make your decision.
I hope I have not misrepresented any of the other posters on this forum, and when I don't agree with them, it doesn't mean they are wrong, it just means I would make different choices for my life, not theirs.
As we are on a star trek theme, I'll quote Bone's comments on 20th century surgery. "Put away your butchers knives and let me save this patient".
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User
Originally Posted by: Online Community MemberThe notion that surgery gives you a backup option of RT has very little value, if RT works as your salvage treatment, then it would have worked as your primary treatment, and you put yourself through needless surgery.
Dave, it's nice to have an alternative viewpoint and your post was spot on except that I would comment on the above statement. Although some people, due to the cancer spread, have no choice but to go down the HT/RT route, when surgery is an option it should (I believe) be the preferred option unless the side effects of ED are so psychologically damaging to the patient to make the alternatives favourable.
Remembering that all of the results of tests, scans and biopsies are guesstimates based on samples, there is a possibility that the chosen treatment may not be 100% successful. In my case the Gleason 7 became Gleason 9 on the lab bench.
The backup of being able to go back for RT/HT treatment down the road if there is a reoccurrence down the road is available for post RARP patients with focussed targets on specific areas rather than bombarding the entire prostate and bed. Lower doses, quicker timeframes and less side effects.
Brachytherapy which is another option that may be offered also causes changes to the prostate which then means any subsequent RP surgery becomes significantly more difficult (my consultants words) if it is needed.
I don't think there is a 'right' choice for anyone - we decide based on what treatments are offered, how we think we can cope with side effects etc etc and we hope that we have made the right decision. With hindsight we have 20:20 vision and only then know whether we made the 'right' choice, but as long as we have the condition cured or managed then we have progressed.
User
Agree with Dave on not going for prostatectomy just because you can follow up with radiotherapy. 30% of prostatectomies need a followup treatment, and for many of them, having RT first would have nailed it without the prostatectomy and its side effects. Of course, RT can also need a followup treatment, but RT most often fails when the cancer had already moved outside the prostate area, when a prostatectomy would have failed too. RT can fail due to recurrence in the treatment area, but that's less common for external beam radiotherapy.
There is one case where I think it does make sense to consider prostatectomy first because you might need a followup treatment, and that's for those men diagnosed young, who might be looking for 30+ years remission, which is a tall order for any one treatment.
User
Hi Dave, Steve and Decho (FYI)
On the whole, as always, excellent posts from you all but I wonder if all four of us are unintentionally confusing Davemac!.
I was and I am always very careful in my response to questions about what treatment an individual should pick. I was simply telling Davemac my story because his situation, as far as I could tell from his post and profile, is very similar to mine was. Nowhere I have suggested that he should choose prostatectomy. The penultimate sentence in my post makes it clear that the choice is his and he needs to be confident in his choice and I am sure we all wish him luck.
All three of you, if I am correct in interpreting your posts, are either pleased or wished you had a choice of surgery. - that is how I interpret your views. Am I right?
I feel very conscious of the fact that I have been very lucky, so far, and don't wish to appear smug. My wife often says to me to be careful how and what I write; occasionally I ask her to edit my posts. The great benefit of this forum is that anyone faced with prostate cancer can be confident that their privacy will be respected and can reveal their most intimate fears and how they are handling or not their problems.
When I was diagnosed I had no help at all and we were in utter dispair. Robotic surgery was in its infancy in the UK and I was taking a great risk, so it seemed at the time. My reason for contributing here is to tell desperate men and their wives/partners that even if your situation appears hopeless there is a treatment to suit them.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Originally Posted by: Online Community MemberHi Davemac,
You have had 3 replies from people who have had surgery, and decho who has had RT but would have chosen surgery.
This post is to give you a balance of replies. I would have chosen surgery, but I did not get the choice, for me RT was the only treatment on offer (Decho also found himself in this position).
Our individual stories are of value, in how we decided our treatment, how we dealt with the effects of it, but what we post about the success or failure of our treatment should be discarded. I am five years post treatment with a PSA <0.1, but prostate cancer can come back at anytime, due to micro metastasis. Pratap, 13 years post surgery with a PSA <0.003, is almost certainly cured, I and everyone else are better described as in remission. Your chance of a successful outcome is about 70% from surgery or RT, irrespective of our outcomes, so there is no point in making your choice based on what you think gives you the best chance of cure because for you they are equal (for me they were not equal, that is why I did not get a choice).
The notion that surgery gives you a backup option of RT has very little value, if RT works as your salvage treatment, then it would have worked as your primary treatment, and you put yourself through needless surgery.
Because the chance of success of either treatment is equal, the biggest consideration should be side effects. Your age and life expectancy are very important, the side effects of surgery are usually immediate or never, and recovery varies between about a year or never (the probability of incontinence or erectile dysfunction, you will have to ask your surgeon).
The side effects of RT, erectile dysfunction, incontinence and secondary cancer, are less probable than from surgery and likely to be at least a decade or two later.
Hormone therapy (HT) is usually given with RT it may be recommended for two years, the side effects can be quite troublesome (look them up), they usually stop within a year of stopping HT.
Your age, life expectancy and other conditions are essential for balancing the importance you place on these side effects. At 70 your chances of living long enough to suffer adverse effects from RT are tiny.
If you have HT and are not fully recovered from that til you are 73, then you have lost a good bit of fun from the 15 years or so you had to live.
If you are incontinent after surgery, and don't recover you may have another 15 years of incontinence to deal with.
Given the choice I would have chosen surgery, I was forced in to RT and HT. I am very glad my hand was forced. My results and requirements of life may bare no relation to yours, so you have to make your decision.
I hope I have not misrepresented any of the other posters on this forum, and when I don't agree with them, it doesn't mean they are wrong, it just means I would make different choices for my life, not theirs.
As we are on a star trek theme, I'll quote Bone's comments on 20th century surgery. "Put away your butchers knives and let me save this patient".
This kind of post is why most of us come back to touch base.
Detailed trauma with a hint of much needed personal resilience and humour.
Brilliant post Dave.
Jamie.
User
For all who have commented on my post, thank you. Pratap, your posts are always excellent and they are well balanced and modest, and most importantly your posts are about getting on and enjoying life after treatment. I too worry a little about smugness, at the moment I could write "I'm five years post diagnosis, and a PSA of <0.1. You too could follow the Dave64 five point plan and be like me". As Andy62 says expecting 30+ years of remission from RT is a big ask. (I was diagnosed at 53 and would rather like to live to 85+), so I take my <0.1 with a pinch of salt, it's good whilst it lasts, but it won't last forever.
Yes, we may be confusing Davemac, but that is because there are no simple solutions, it's a confusing place to be. Showing Davemac the implications of decisions, won't make his decision easier but when he makes one it will hopefully be the best one for his life.
Steve, presenting different viewpoints with a logical argument as you have done, is more value than coming to a conclusion, davemac or any subsequent reader can come to their own conclusion, as long as we give the best details and the best logic.
Jamie, your post is obviously the best. "Brilliant post Dave". Flattery will get you everwhere.
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User
Hi Davemac(L)
If I may I would like to ask you whether this discussion we are having is helping you in your decision making process. All we can do is to describe our situations and how and why we chose a particular treatment. Some men have a choice and others don't. To clarify, our decision was based on a single fact and the confidence we had in the urologists. He showed us the result of the scan indicating that the cancer was well ccnfined with very clear and sufficient margins. The oncologist we met was a young guy who was just beginning a trial of the CyberKnife technique at UCL. He had carried out very few treatments and he was far too confident that he can offer me a cure whereas the urologist made it clear that he could not guarantee to save my nerves and pointed out the risk of ED. The thought of physically removing the cancerous organ plays a big part when men are given a choice of surgery. There has been a significant progress with good outcomes in targeted radiation treatments since I had my surgery 12 years ago.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
While not claiming to be an expert, the para below in Dave's note appears highly debatable:
'The notion that surgery gives you a backup option of RT has very little value, if RT works as your salvage treatment, then it would have worked as your primary treatment, and you put yourself through needless surgery.'
I find it quite re-assuring to know there is a potential 'cure' route remaining through RT. Whether RT would have got it all can't be known although various scenarios could be debated including ineligibility for RT.
Also I still have a full drawer of potential RT 'Grays" and full years of hormones, having not used any of my lifetime limit. Nomograms claim I have a good chance of 7yrs remission from salvage RT with hormones if my psa reaches BCR.
As also said above, salvage alone wouldn't be my reason to choose surgery, but it's quite attractive. I always refer to myself as I don't like to recommend to others. Good stuff above tho'
Edited by member 20 Aug 2023 at 10:07
| Reason: Not specified
User
Peter, I think some of this comes down to what might cause recurrence after each of the treatments.
A prostatectomy is an easy one - there's a sharp edge to the treatment which is literally the surgeon's scalpel cut. If there's cancer outside that, due either to the cancer bridging that barrier (positive margins) or due to mets, then there will be recurrence. There are a couple of cases here, the first and most common is when PSA dropped very low or undetectable following the RP, but then slowly rose, and that's due to micro-mets outside the prostate (too small to show on scans), which have continued growing. The second case is where the PSA didn't go very low following the RP, and that's a more significant met which wasn't spotted before the RP - this is rarer. There's also the very occasional instance of the prostate being accidentally cut in to and cancer cells leaking out from inside before it's removed, but we can probably ignore that one on account of it being very rare.
For external beam radiotherapy, there are two causes of failure, recurrence in the treatment area, which is quite rare, or again some cancer outside the treatment area which wasn't spotted before the EBRT.
However, it helps to understand what the treatment area is. The EBRT will treat the whole prostate and a few mm outside at the dose required to kill the kill the cancer. However, because of the way EBRT is delivered, the treatment doesn't stop at that boundary, but the dose delivered reduces as you move away from the prostate. That means the prostate bed was also treated, so that will have killed the micro-mets (which don't seem to need such a high dose anyway) in the prostate bed which are the most common cause of recurrence if RP when been used. Mets or micro-mets significantly further from the prostate won't have been treated and would cause recurrence, but that would be the case for either treatment.
So the EBRT has a benefit when there are micro-mets just outside the prostate as it will catch those too, which is probably the most common cause of recurrence after RP.
What is the risk of micro-mets in the prostate bed? This seems to increase with the increased risk of diagnosis. High risk is denoted by staging ≥ T3 (some say ≥ T2c), or Gleason > 7, or PSA ≥ 20. I've seen a suggestion that there's a good correlation between the number of high risk factors you have (0, 1, 2, 3) and the chance of recurrence after RP. Perineural invasion (PNI) is also a theoretical risk for this, since the nerve sheaths provide a route for spread out through the prostate capsule, although I don't know what the correlation between PNI and prostate bed recurrence is in practice.
Of course, this is only one of many factors you might take in to consideration. Another factor for me was that surgery was unlikely to be nerve sparing, so I had a better chance of retaining erectile function with RT, and indeed I have, but that wasn't a given - there was still a risk of losing it.
Another fctor I mentioned before is for very young men needing treatment, and therefore hoping for many decades of remission which is a challenge for any one treatment. In this case, choosing a curative treatment which can be followed by another curative treatment is a more significant consideration. Also, the increased risk of radiotherapy induced cancers is a factor to consider if you're still expecting to be alive in many decades, even though treatments will be quite different by then.
User
An interesting and fulsome post, Andy. After that you could question why anyone would choose surgery. Although things are never clear and often not 100%. That's why for 7yrs I've kept an eye on here and blinked at a declaration of certainty.
Another possble point of failure, when I spoke to the surgeon he said my lesion was in the apex of one side which seems well away from the bladder and bed. He then drew in the sphincter and explained that he'd move it to the bladder. It seemed close to the lesion so I asked if it could carry anything. He said not usually, which was only half encouraging. I've long been suspicious of that. I hope Davemacs head isn't whirling.
Edited by member 21 Aug 2023 at 14:41
| Reason: Not specified
User
Thankyou Pratap. Your post was very informative and useful. As was all the others. What is clear is when it comes down to it the choice is mine and my good lady Mandy. You and the others have helped me make that decision so much easier.
I will be going down the surgery route as in my head I just want to get the thing out of me. Anything after that I will have to deal with.
Kind regards to you all.
Life long and prosper.
User
I am not surprised that you have chosen the surgery route, Davemac(L). When surgery is offered with a level of confidence, in my experience over 12 years since my surgery, I have noticed that what tips the balance in favour of prostatectomy is the psychological imperative that it is best to get the prostate gland out with the cancer. I was 71 when I had the surgery and I am still here enjoying life with my wife and three grand children. Needless to say that the path ahead for you will have twists and turns. I am overcoming my natural modesty to say that I have bags of experience about the surgery, post surgery problems (ED, incontinence, constipation, leaking catheter which in my case had to remain in place for 5 weeks, simple method of doing Kegel exercise, etc etc) and how we have managed to re-establish our intimate life. Unfortunately 12 years ago there was very little help out there and it was a question of Googling and more often than not solving problems from first principles. I would be very happy to say more or even a chat if you message me privately. Dealing with prostate cancer is a lonely time. I wish luck which you need as your companion in this journey.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Thank you. I may well take you up on further discussion via private messaging as I move further along. Can I achieve that on this site?
User
I have sent you a private message. To reply click my name on one of my posts which will take you to my profile page where you can click to send me a private message.
'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate |
User
Hi
It will not allow private messaging from me as I have not been on the group long enough.
David
Life long and prosper
User
I think after about 10 public posts you can send private messages.
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Pratap - PM sent - hope it gets through as I am sure I have made more than 10 posts.
User
Hi Everyone
Thank you all for sharing your personal experiences with me and offering some sound advice.
My results are now with me and I am still agonising over a decision. However the results show that I do not need to panic over my decision and I can give myself and family more time to discuss and make that important decision.
PSA Level at diagnosis: 5.9 (I am on Finasteride so that doubles to 11.8)
Gleason score: 3 + 4 = 7
T Stage: T0
M Stage: Mx
N Stage: Nx
Cancer is classed as Localised
I have been in contact with my CNS Nurse and had a good chat. So I have stopped the panicking and automatically opting for the surgery option and will however be more patience in my decision. I now I am 70 years old but have not underlying medical conditions and fairly active for my age. I am a little overweight but can lose a few pounds. So I am now leaning towards Active surveillance mainly because I am worried about the side effects of the other two options offered.
Anyway I will let you all know what I decide in the near future.
Live long and prosper
User
Active Surveillance seems a very good idea. There is an argument for having a treatment whilst you are young enough to cope with it, but if the progression of the cancer is slower than your other aging processes (or the inevitable journey to death, if you want straight speaking) then there is no point in giving yourselves unnecessary side effects whilst on that journey.
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User
Hi Davemac,
It's often said you can take more time and overtreatment can be a problem.
The rate of psa change is one factor. Although it was a bit surprising yesterday to read that MRI with psa is being suggested for screening as psa is so unreliable. With 50% having a psa reading too low it said on the BBC although that seemed too many to me.
Is there a T0 for prostate cancer. Prostate Cancer UK and other charities quote T1 as the lowest.
T1 – Cancer present, but not detectable in DRE or on imaging.
User
Hi Peter
Yes I saw the same news report. Anyway of improving early diagnosing the cancer can only be a good thing. Unfortunately money will come into as well as not enough resources or manpower.
I am somewhat confused with the paperwork I received so I have gone back to my CNS team for an explanation of the T0 thing.
Will update you later.
Life long and prosper
User
Hi Peter
They have just got back to me with the following:
The T stage is always a bit ambiguous as it`s often based on how the prostate feels when examined. T1 was what your MRI suggested.
So for me it is T1, which again is strengthening my thoughts towards Active surveillance to start with.
Life long and prosper
User
Most people's diagnosis starts at a minimum of T2 this mean the tumour could be felt by finger, if you can get the finger in the right place. T3 and T4 would also be obviously palpable.
T1 means imaging or other technology can find the tumour but a finger can't. In your case something suspicious showed on the MRI so you became a T1.
T0 means there is no tumour, so it seems that when they looked for the tumour during the biopsy they couldn't find it. They may have missed it or it just isn't there. I don't know where they found the Gleason 3 and 4 cells, maybe just some lieing around, but not enough to justify the name tumour. I have heard this referred to as precancerous cells, they look a bit dodgy, but aren't doing anything wrong.
An acquaintance of mine, who is a hypochondria got the surgeons to remove her milk glands as she had some precancerous cells. No harm done, but she was probably at more risk from the anaesthetic than the cells.
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User
Cheers Dave
This prompts me to talk somemore.
Live long and prosper