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User
Posted 21 Jun 2019 at 11:32

Hi everyone,

I've been recommended joining a forum, so I got up courage to make my first post - I'm sure sharing experiences must be really useful.

Of course I shall browse past posts to see what I can glean from experiences others have kindly shared.

From a blood test showing high PSA (21) I've been down diagnostic route (MRI Biopsy bone scan & CT scan) and have T3a PC which I'm told at my age (64) should be treated. Have now had consultations at hospitals  for either Hormone with radiation treatment and robotic surgery. At the moment I find it difficult to know which to opt for - it a bit overwhelming, I keep wavering from one to the other.

On the bright side, the sun is shining - hope you have a good weekend.

Richard

Richard

User
Posted 11 Jul 2019 at 21:45

It is not an easy decision to take, myself and two of my brothers diagnosed at various dates throughout 2018, all have received their elected treatment.

From my own viewpoint I opted for surgery (Robotic), the decision has to be our own

! My wife is medically trained and whilst we discussed the options given she did not try to influence me at all.

I had pretty much made my mind up on being informed of where the consultants suggested my cancer was at, contained within the prostate and no signs of lymph or bone transfer. Given this and my engineering logic "Removal" was the chosen route.

My elder brother opted for Brachytherapy and my younger brother the same as myself. Each option has its Pro's and Con's, that is why it has to be our choice, what do you feel comfortable with and what don't you. I am sure that no matter which option you opt for it will be the RIGHT choice!

I have no regrets concerning my choice and recovery has gone well.

 

Be positive and remain strong👍👍

 

 

User
Posted 21 Jun 2019 at 12:54
Welcome Richard to the forum that nobody wants to be on, but you will find it very friendly and useful ask anything you want and am sure someone will be able to help. Download the toolkit as my husband and myself found it really helpful.

You are having better weather than I am, can't make its mind up to rain or shine. - enjoy your weekend

Lynda

User
Posted 21 Jun 2019 at 13:28

Hi Richard,

Welcome to the club you will find all the members friendly and answer most of the questions as i found when i joined in 2016.

I think you need to put your Gleason score up to help us with answers or advice.I took the Brachytherapy treatment in September 2016 and 33 months on i am doing very well, click on my Avatar to see my journey.

If you have any Questions on the Brachytherapy treatment i will answer as best i can on my ideas before and after treatment and progress to date.

Good luck John. 

User
Posted 21 Jun 2019 at 14:30
Hi Richard,

T3a means that the cancer has spread outside the gland (extra-capsular extension).

Two friends had surgery and have both suffered recurrence, so now have to have hormone therapy and radiotherapy anyway, which they would have had if they had eschewed surgery in the first place.

Both surgery and HT/RT have similar outcomes these days in terms of ‘cure’, but both have side-effects.

Make sure you take advice from a surgeon as well as an oncologist. A group of specialists called the Multi-Disciplinary Team (MDT) will check out your condition and recommend a course of treatment, but ultimately which path to take will be down to you.

I hope you hear the magic words ‘with curative intent’ during your conversations with the medics, which means they will try their damnedest to ‘cure’ you. The inverted commas are because cancer can always return.

Best of luck.

Cheers, John

User
Posted 21 Jun 2019 at 14:43

As a T3a, you are locally advanced which means the cancer has (or high chance it has) broken through the prostate capsule. This reduces the chance of radical prostatectomy (RP, surgery) being able to remove it all, and you would quite likely need radiotherapy (RT) anyway afterwards. So one line of thought is go with just RT, and avoid having side effects from both procedures. This may depend exactly where the break through the prostate capsule is, and how near the capsule is in the rest of the prostate (the "margin").

With a PSA > 20, you are just in to the high risk category. A currently popular treatment for this, following on from trials starting well over 10 years ago and 10 year survival data now being available, is Brachytherapy combined with whole pelvis RT (WPRT) - sometimes referred to as Whole Pelvis and HDR boost. The WPRT is a lower than normal dose (75%) to the whole pelvis to mop up spread outside the prostate, and the Brachytherapy tops that up locally inside the prostate to full dose. RT is preceded with 3-6 months on Hormone Therapy (HT) because that makes the RT significantly more effective, and the HT usually continues afterwards to make a total of 18-36 months. (This is the path I'm on.)

Another factor is your overall health and fitness. A RP is quite a significant operation with a long recovery time from the abuse the body gets in the process, even keyhole. This means it's less suitable for less fit people and as people get older. RT is not such an assault on the body, and you may be in better shape immediately afterwards. RT does bring risk of causing bowel and bladder cancers many years later on - not an issue if you are elderly, but more of a lifetime risk if you are younger.

This covers outcomes, but another important issue is quality of life (QoL). No PCa treatment is without impact on sexual function, at least temporarily, and often permanently too, and this impacts relationship with a partner, often very significantly so. Different people have differing priorities with regards outcomes or QoL, and this has to be factored in to your treatment decisions.

Nerves that control erection are on the rear and lower surface of the prostate. If the cancer doesn't reach or extend through the capsule in those locations, the nerves can be spared during a RP, giving you a chance for erections to work afterwards. Sometimes, partial sparing can be done even if full sparing isn't possible. Even in the case of nerve sparing, erections don't always work again afterwards, and conversely, when not spared, there is a tiny chance erections will recover after some years (one member has experienced this). Almost no one can achieve erections immediately after RP - even with nerve sparing, it typically takes 6-24 months for the nerves to recover to the full extent that they are going to. With RT, the situation is the other way around. It usually doesn't impact the nerves immediately, but RT carries on "cooking" the area for some years after treatment, and erections can be lost some years down line. The HT that goes along with RT also has a temporary impact on libido while you are on it, and no libido has the secondary effect of causing erection problems.

So it's not a simple decision which path to take - some of it depends on what your multi-disciplinary team (MDT) recommends with regards to survival rates and ability to handle the treatment, but it may not be clear cut (in many cases, the survival statistics are almost identical). Then you have to factor in what's important to you in terms of QoL. We do have members here who have ceased treatment because QoL in terms of sexual function is more important to them than longevity, but for most people, longevity is pretty high up the priority list.

As Johntheprint said, if you give us more details of your precise diagnosis, and PSA scores with dates in your bio, it helps to give advice more targeted to your situation.

Anyway, sorry you're here, but welcome, and you'll get lots of advice if you reach out for it.

Edited by member 21 Jun 2019 at 15:16  | Reason: Not specified

User
Posted 21 Jun 2019 at 19:19
Yes, there are pros and cons for going with surgery backed up with RT in need or one of the single forms of RT or a dual form of RT such as one of the two forms of brachytherapy plus EBRT. Sometimes the consultants will advise against a certain course or say what options an individual would be suitable for but in this last situation may leave this to the individual to decide taking all aspects into consideration. Please note that not all hospitals can provide every type/variation of treatment. You may find it helpful as many do to download or obtain a hard copy of the 'Toolkit' which is available from the publications section on the main part of this Charity. It gives good information about the disease and various ways of treating it.

Barry
User
Posted 21 Jun 2019 at 22:39
Have your urologist and oncologist made no recommendations as to which treatment would be preferable in your situation? In my case both consultants advised me that the HT/RT route would be better, so that's the one I went for.

Regards,

Chris

User
Posted 22 Jun 2019 at 11:07

Richard,

A couple of things you've said about the setup where you are being diagnosed are a bit alarming to me.

Normally in the NHS, you are diagnosed right through to treatment options by a multi-disciplinary team (MDT). For PCa, this is run by the urology consultants, but includes oncology consultants, radiologists, radiographers, nurse oncology/urology specialists (Macmillan nurses if the hospital has them), and often other specialists too (hospice, endocrinology, etc). There can be 30 experts in the MDT. They all discuss each patient, and then one of them (usually a urology consultant or specialist nurse) feeds back to you the MDT's recommendations. I'm wondering if you are not under an MDT? You should be getting back not anyone's personal recommendations, but the collective recommendations from the MDT. That is often more than one treatment path with the comparative pros and cons, which ultimately you have to decide.

In private practice, it's more common that you would be under just one specialist, and can often miss out on input from the other specialities. My GP and some others I respect told me not to go for private diagnosis for this reason. (Getting additional private diagnostic test/scans or private treatment is fine, but you really want the diagnosis path run by a MDT.)

Secondly, do you know why brachytherapy is not appropriate? There may be a perfectly valid reason, but I'm worried it's just that they don't offer it - that doesn't make it inappropriate.

Might be interesting to know the hospitals involved in case anyone can provide you with feedback, but don't name any staff.

User
Posted 22 Jun 2019 at 13:51

Normally in the NHS, you are diagnosed right through to treatment options by a multi-disciplinary team (MDT). For PCa, this is run by the urology consultants, but includes oncology consultants, radiologists, radiographers, nurse oncology/urology specialists (Macmillan nurses if the hospital has them), and often other specialists too (hospice, endocrinology, etc). There can be 30 experts in the MDT. They all discuss each patient, and then one of them (usually a urology consultant or specialist nurse) feeds back to you the MDT's recommendations. 

That may be the case in many areas Andy but I don't think it is true of all Trusts. And even where there is a proper MDT meeting, what we see on here is that many, many men are told "the MDT says either treatment is suitable so off you go and choose by yourself" 

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

User
Posted 23 Jun 2019 at 09:33

For well over ten years now, MDT meetings have been mandatory, and any NHS trust that didn't have one would be in big trouble.

Granted, the detail varies, and some are dominated by one specialty rather than being the open forums they are supposed to be.

For many people with PCa, there is no "best choice"; research offers no clear survival advantage for one treatment over another. But what will vary is the quality of life issues. Specifically, the vastly different side effect profile of different treatment modes. In which case it's entirely appropriate to let the individual make the final choice - provided he has this background information, of course!

I chose RT/HT on this basis, and have never had reason to regret it. Others here have opted for the surgical route and are equally content with their choice.

We all different, we all lead different lives, and we all have different ideas of what 'living hell' means! Choose carefully!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 23 Jun 2019 at 16:27

Hi Richard,

I am pleased to see all the posts you have received on here and hope it will help you,I should have looked closer that it had come out of the prostate but at least it gave you an option to ask the specialist about that option and to get a suitable reply so you can cross it off the list.I was given the option of robotic removal by the first specialist and he seemed to think i would signup with him straight away until i asked to see the Brachytherapy specialist that happened to come from another hospital to get a second opinion he said ok see him then come back to me.

That of course did not happen but the then i had the worry right up to the Brachytherapy operation had i made the right choice.

Good luck John.

Edited by member 23 Jun 2019 at 16:28  | Reason: Not specified

User
Posted 23 Jun 2019 at 20:58

Hi Richard,

Some good advice on here. If I can add some examples of things I experienced it might add to your thinking if you find any relevance.

 I was told it was near the edge and that made me want fast treatment which the operation seemed to offer.  I didn't think having hormones then RT would have applied the brakes fast enough.  Although it was just a hunch.

The urologist said the MRI and basic biopsy didn't give an accurate view of where it was and he suggested one option was a template biopsy when he gave me the options.  Although I had already decided on the op and then he said he'd have chosen that option.  I must admit I really didn't want hormones and RT sounded like hard work.

After the op it was 4+4 although the biopsy had only touched the edge with one pin. But the true inspection often gives a higher result, you don't get that with RT.

Also the surgeon said pre-op it was at the Apex which is away from the bladder.  That gave me more encouragement about the op as it was away from the bladder so by my thinking if they took it out with the nerves on that side it could be gone.   You might ask if they know where it protrudes and if that makes a difference in your case.

All this is very simple thinking as after reading more nothing is simple and a benefit of RT is it can sweep away things just beyond.    On the other hand if you have the op you can still have RT on the prostate area but not usually the other way round.  If you have RT then you don't get more RT on the prostate area. 

It's a tough decision and easy to waver,  but it's good to be decisive to get things moving and to have no regrets.  Some speak of regrets but there are so many combinations of things that can happen it's difficult to be certain what the reason is for what happened.  I've absolutely no regrets but so far psa is still undetectable (<0.05)  2 and a half years on.

So all the best with your decision, be decisive and have no regrets.

User
Posted 26 Jun 2019 at 10:40
To be fair, you will never have complete peace of mind whichever route you take. Even if you get a good pathology result from surgery, you will be watching your PSA for the rest of your life, just waiting for a sign of recurrence. With RT/HT, you can put it to the back of your mind during the HT but then as soon as you stop having the hormones, you spend the rest of your life wondering if the PSA is going to rise beyond an acceptable number.

Having said that, you are correct that surgery means they can get the prostate into a petrie dish and tell you exactly what has been removed and whether anything is known to have been left behind. The neuroSAFE technique is a fantastic step forward and if you were my brother/friend, I would be telling you to snap their hand off.

I suppose the main question that you need to ask your surgeon is "with a T3 possibly more, what is the % likelihood that I will need adjuvant RT/HT post-surgery?" It may be that if you are more than likely to need adjuvant treatment, you decide that surgery is an unnecessary extra set of side effects.

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

User
Posted 01 Jul 2019 at 19:57

Hi rs

"There is a chance to be part of a neuroSAFE trial where 50% of candidates have tissue analysed during the operation which may give some chance of some nerve sparing if it shows good margin but in the initial consultation the surgeon didn't seem hopeful of nerve sparing, I think based on MRI scan - I guess an advantage of surgery is they can get a better view of tumour / budging actually during the operation which will be clearer than MRI."

I can't think of any reason why you wouldn't jump for this option. My husband had to pay privately for this procedure and so far its had some very positive outcomes. The thing is, there is nothing to lose by having tissue analysed whilst in surgery. 

User
Posted 05 Jul 2019 at 21:33

Hi, This sort of treatment has been done on skin cancer for some time(1938). Usually in the US.  It's called MOHS surgery and they take skin and test it until they find cancer free. In the UK they do a 4mm+ margin round what they see. (They did a few years ago.)

So it's tried in some ways. Yet I'd be cautious about whether they're certain it's cancer free in the prostate. I don't know how they can be as they can't guarantee a post op biopsy result. So for someone to take a little less tissue based on a check during an operation sounds like adding risk to risk. It's not a no brainer to me.

Edited by member 05 Jul 2019 at 21:34  | Reason: Not specified

User
Posted 12 Jul 2019 at 10:41

Originally Posted by: Online Community Member

It is not an easy decision to take, myself and two of my brothers diagnosed at various dates throughout 2018, all have received their elected treatment.

From my own viewpoint I opted for surgery (Robotic), the decision has to be our own

Quote:

I endorse that completely. I recognise that some people will want a "steer" but the procedures are so different as are the side effects. In my case active surveillance was "not recommended" Brachytherapy in terms of seeds was off the table because of the stage of my cancer so 3 options were presented - surgery, high dose brachytherapy with EBRT as a top up,  and EBRT with adjuvant Hormone Therapy. I then had to choose and that's as it should be difficult though that decision might be. 

Edited by member 12 Jul 2019 at 10:43  | Reason: Not specified

Show Most Thanked Posts
User
Posted 21 Jun 2019 at 12:54
Welcome Richard to the forum that nobody wants to be on, but you will find it very friendly and useful ask anything you want and am sure someone will be able to help. Download the toolkit as my husband and myself found it really helpful.

You are having better weather than I am, can't make its mind up to rain or shine. - enjoy your weekend

Lynda

User
Posted 21 Jun 2019 at 13:28

Hi Richard,

Welcome to the club you will find all the members friendly and answer most of the questions as i found when i joined in 2016.

I think you need to put your Gleason score up to help us with answers or advice.I took the Brachytherapy treatment in September 2016 and 33 months on i am doing very well, click on my Avatar to see my journey.

If you have any Questions on the Brachytherapy treatment i will answer as best i can on my ideas before and after treatment and progress to date.

Good luck John. 

User
Posted 21 Jun 2019 at 14:30
Hi Richard,

T3a means that the cancer has spread outside the gland (extra-capsular extension).

Two friends had surgery and have both suffered recurrence, so now have to have hormone therapy and radiotherapy anyway, which they would have had if they had eschewed surgery in the first place.

Both surgery and HT/RT have similar outcomes these days in terms of ‘cure’, but both have side-effects.

Make sure you take advice from a surgeon as well as an oncologist. A group of specialists called the Multi-Disciplinary Team (MDT) will check out your condition and recommend a course of treatment, but ultimately which path to take will be down to you.

I hope you hear the magic words ‘with curative intent’ during your conversations with the medics, which means they will try their damnedest to ‘cure’ you. The inverted commas are because cancer can always return.

Best of luck.

Cheers, John

User
Posted 21 Jun 2019 at 14:43

As a T3a, you are locally advanced which means the cancer has (or high chance it has) broken through the prostate capsule. This reduces the chance of radical prostatectomy (RP, surgery) being able to remove it all, and you would quite likely need radiotherapy (RT) anyway afterwards. So one line of thought is go with just RT, and avoid having side effects from both procedures. This may depend exactly where the break through the prostate capsule is, and how near the capsule is in the rest of the prostate (the "margin").

With a PSA > 20, you are just in to the high risk category. A currently popular treatment for this, following on from trials starting well over 10 years ago and 10 year survival data now being available, is Brachytherapy combined with whole pelvis RT (WPRT) - sometimes referred to as Whole Pelvis and HDR boost. The WPRT is a lower than normal dose (75%) to the whole pelvis to mop up spread outside the prostate, and the Brachytherapy tops that up locally inside the prostate to full dose. RT is preceded with 3-6 months on Hormone Therapy (HT) because that makes the RT significantly more effective, and the HT usually continues afterwards to make a total of 18-36 months. (This is the path I'm on.)

Another factor is your overall health and fitness. A RP is quite a significant operation with a long recovery time from the abuse the body gets in the process, even keyhole. This means it's less suitable for less fit people and as people get older. RT is not such an assault on the body, and you may be in better shape immediately afterwards. RT does bring risk of causing bowel and bladder cancers many years later on - not an issue if you are elderly, but more of a lifetime risk if you are younger.

This covers outcomes, but another important issue is quality of life (QoL). No PCa treatment is without impact on sexual function, at least temporarily, and often permanently too, and this impacts relationship with a partner, often very significantly so. Different people have differing priorities with regards outcomes or QoL, and this has to be factored in to your treatment decisions.

Nerves that control erection are on the rear and lower surface of the prostate. If the cancer doesn't reach or extend through the capsule in those locations, the nerves can be spared during a RP, giving you a chance for erections to work afterwards. Sometimes, partial sparing can be done even if full sparing isn't possible. Even in the case of nerve sparing, erections don't always work again afterwards, and conversely, when not spared, there is a tiny chance erections will recover after some years (one member has experienced this). Almost no one can achieve erections immediately after RP - even with nerve sparing, it typically takes 6-24 months for the nerves to recover to the full extent that they are going to. With RT, the situation is the other way around. It usually doesn't impact the nerves immediately, but RT carries on "cooking" the area for some years after treatment, and erections can be lost some years down line. The HT that goes along with RT also has a temporary impact on libido while you are on it, and no libido has the secondary effect of causing erection problems.

So it's not a simple decision which path to take - some of it depends on what your multi-disciplinary team (MDT) recommends with regards to survival rates and ability to handle the treatment, but it may not be clear cut (in many cases, the survival statistics are almost identical). Then you have to factor in what's important to you in terms of QoL. We do have members here who have ceased treatment because QoL in terms of sexual function is more important to them than longevity, but for most people, longevity is pretty high up the priority list.

As Johntheprint said, if you give us more details of your precise diagnosis, and PSA scores with dates in your bio, it helps to give advice more targeted to your situation.

Anyway, sorry you're here, but welcome, and you'll get lots of advice if you reach out for it.

Edited by member 21 Jun 2019 at 15:16  | Reason: Not specified

User
Posted 21 Jun 2019 at 19:19
Yes, there are pros and cons for going with surgery backed up with RT in need or one of the single forms of RT or a dual form of RT such as one of the two forms of brachytherapy plus EBRT. Sometimes the consultants will advise against a certain course or say what options an individual would be suitable for but in this last situation may leave this to the individual to decide taking all aspects into consideration. Please note that not all hospitals can provide every type/variation of treatment. You may find it helpful as many do to download or obtain a hard copy of the 'Toolkit' which is available from the publications section on the main part of this Charity. It gives good information about the disease and various ways of treating it.

Barry
User
Posted 21 Jun 2019 at 22:39
Have your urologist and oncologist made no recommendations as to which treatment would be preferable in your situation? In my case both consultants advised me that the HT/RT route would be better, so that's the one I went for.

Regards,

Chris

User
Posted 22 Jun 2019 at 00:15

Wow this forum is good - thanks for all your replies with welcomes and advice / information.

To answer some questions asked 

My gleason score was 4+3=7
I've updated profile with a bit more detail and dates.
I've been told brachytherapy is not appropriate in my case, but pleased to hear it was a good option for you. John.

I'm reasonably fit for my age (64) so RP surgery is still an option.

I have accessed the Toolkit and agree there is a lot of info in there.

The two consultants were at different hospitals and seemed careful not to direct me either route emphasizing its a personal decision - I gathered the outcomes on treating the cancer should be similar but the side effects different, at least in timing. 

Thanks again for all your replies, I need to fully digest some of your info.

Best Regards,

Richard

 

 

Richard

User
Posted 22 Jun 2019 at 11:07

Richard,

A couple of things you've said about the setup where you are being diagnosed are a bit alarming to me.

Normally in the NHS, you are diagnosed right through to treatment options by a multi-disciplinary team (MDT). For PCa, this is run by the urology consultants, but includes oncology consultants, radiologists, radiographers, nurse oncology/urology specialists (Macmillan nurses if the hospital has them), and often other specialists too (hospice, endocrinology, etc). There can be 30 experts in the MDT. They all discuss each patient, and then one of them (usually a urology consultant or specialist nurse) feeds back to you the MDT's recommendations. I'm wondering if you are not under an MDT? You should be getting back not anyone's personal recommendations, but the collective recommendations from the MDT. That is often more than one treatment path with the comparative pros and cons, which ultimately you have to decide.

In private practice, it's more common that you would be under just one specialist, and can often miss out on input from the other specialities. My GP and some others I respect told me not to go for private diagnosis for this reason. (Getting additional private diagnostic test/scans or private treatment is fine, but you really want the diagnosis path run by a MDT.)

Secondly, do you know why brachytherapy is not appropriate? There may be a perfectly valid reason, but I'm worried it's just that they don't offer it - that doesn't make it inappropriate.

Might be interesting to know the hospitals involved in case anyone can provide you with feedback, but don't name any staff.

User
Posted 22 Jun 2019 at 13:51

Normally in the NHS, you are diagnosed right through to treatment options by a multi-disciplinary team (MDT). For PCa, this is run by the urology consultants, but includes oncology consultants, radiologists, radiographers, nurse oncology/urology specialists (Macmillan nurses if the hospital has them), and often other specialists too (hospice, endocrinology, etc). There can be 30 experts in the MDT. They all discuss each patient, and then one of them (usually a urology consultant or specialist nurse) feeds back to you the MDT's recommendations. 

That may be the case in many areas Andy but I don't think it is true of all Trusts. And even where there is a proper MDT meeting, what we see on here is that many, many men are told "the MDT says either treatment is suitable so off you go and choose by yourself" 

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

User
Posted 23 Jun 2019 at 09:33

For well over ten years now, MDT meetings have been mandatory, and any NHS trust that didn't have one would be in big trouble.

Granted, the detail varies, and some are dominated by one specialty rather than being the open forums they are supposed to be.

For many people with PCa, there is no "best choice"; research offers no clear survival advantage for one treatment over another. But what will vary is the quality of life issues. Specifically, the vastly different side effect profile of different treatment modes. In which case it's entirely appropriate to let the individual make the final choice - provided he has this background information, of course!

I chose RT/HT on this basis, and have never had reason to regret it. Others here have opted for the surgical route and are equally content with their choice.

We all different, we all lead different lives, and we all have different ideas of what 'living hell' means! Choose carefully!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 23 Jun 2019 at 12:05

Thanks for all the new replies.

To clarify a MDT was involved, we had a meeting with a clinical nurse specialist who relayed their diagnosis, T3a, and facilitated the appointments with oncologist and surgeon  and CT scan. I was told it was though Brachytherapy was unlikely to be of benefit but still she contacted a specialist team at yet another hospital regarding Brachytherapy who came back saying not appropriate (not 100% sure why, but mainly I think based on estimated size of tumour and T3a rating) Both oncologist and surgeon  were referring to MDT findings.

So as Andrew says I have to way up the effect of side effects and probability of surgery successfully removing all cancer and so not requiring HT/radiotherapy anyway.

Best Regards,

Richard

Richard

User
Posted 23 Jun 2019 at 16:27

Hi Richard,

I am pleased to see all the posts you have received on here and hope it will help you,I should have looked closer that it had come out of the prostate but at least it gave you an option to ask the specialist about that option and to get a suitable reply so you can cross it off the list.I was given the option of robotic removal by the first specialist and he seemed to think i would signup with him straight away until i asked to see the Brachytherapy specialist that happened to come from another hospital to get a second opinion he said ok see him then come back to me.

That of course did not happen but the then i had the worry right up to the Brachytherapy operation had i made the right choice.

Good luck John.

Edited by member 23 Jun 2019 at 16:28  | Reason: Not specified

User
Posted 23 Jun 2019 at 20:58

Hi Richard,

Some good advice on here. If I can add some examples of things I experienced it might add to your thinking if you find any relevance.

 I was told it was near the edge and that made me want fast treatment which the operation seemed to offer.  I didn't think having hormones then RT would have applied the brakes fast enough.  Although it was just a hunch.

The urologist said the MRI and basic biopsy didn't give an accurate view of where it was and he suggested one option was a template biopsy when he gave me the options.  Although I had already decided on the op and then he said he'd have chosen that option.  I must admit I really didn't want hormones and RT sounded like hard work.

After the op it was 4+4 although the biopsy had only touched the edge with one pin. But the true inspection often gives a higher result, you don't get that with RT.

Also the surgeon said pre-op it was at the Apex which is away from the bladder.  That gave me more encouragement about the op as it was away from the bladder so by my thinking if they took it out with the nerves on that side it could be gone.   You might ask if they know where it protrudes and if that makes a difference in your case.

All this is very simple thinking as after reading more nothing is simple and a benefit of RT is it can sweep away things just beyond.    On the other hand if you have the op you can still have RT on the prostate area but not usually the other way round.  If you have RT then you don't get more RT on the prostate area. 

It's a tough decision and easy to waver,  but it's good to be decisive to get things moving and to have no regrets.  Some speak of regrets but there are so many combinations of things that can happen it's difficult to be certain what the reason is for what happened.  I've absolutely no regrets but so far psa is still undetectable (<0.05)  2 and a half years on.

So all the best with your decision, be decisive and have no regrets.

User
Posted 26 Jun 2019 at 10:25
Hi, Thank you to everyone who has replied, I really appreciate it and its very helpful to know I'm not alone.

People have given good advice and shared their experience. I think I'm edging towards surgery but still wavering although I know I need to be decisive very soon or I'll be too stressed to make a decision.

There is a chance to be part of a neuroSAFE trial where 50% of candidates have tissue analysed during the operation which may give some chance of some nerve sparing if it shows good margin but in the initial consultation the surgeon didn't seem hopeful of nerve sparing, I think based on MRI scan - I guess an advantage of surgery is they can get a better view of tumour / budging actually during the operation which will be clearer than MRI.

It seems with surgery the treatment will be over quicker and side effects established earlier, and biopsy will give true status of my cancer (but could be worse than T3a I've been told) and PSA should drop to negligible relatively quickly) so if there are good I get peace of mind earlier. With hormone / RT / hormone the treatment is going on for nearly 3 years total - I'm not sure at what stage I get peace of mind. I gather side effects of RT/hormone can vary a lot according to individual so its difficult to know how badly I would be affected, but all treatment is a gamble I guess.

Thanks again everyone for taking the time to post your comments, really appreciated..

Richard

Richard

User
Posted 26 Jun 2019 at 10:40
To be fair, you will never have complete peace of mind whichever route you take. Even if you get a good pathology result from surgery, you will be watching your PSA for the rest of your life, just waiting for a sign of recurrence. With RT/HT, you can put it to the back of your mind during the HT but then as soon as you stop having the hormones, you spend the rest of your life wondering if the PSA is going to rise beyond an acceptable number.

Having said that, you are correct that surgery means they can get the prostate into a petrie dish and tell you exactly what has been removed and whether anything is known to have been left behind. The neuroSAFE technique is a fantastic step forward and if you were my brother/friend, I would be telling you to snap their hand off.

I suppose the main question that you need to ask your surgeon is "with a T3 possibly more, what is the % likelihood that I will need adjuvant RT/HT post-surgery?" It may be that if you are more than likely to need adjuvant treatment, you decide that surgery is an unnecessary extra set of side effects.

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

User
Posted 01 Jul 2019 at 19:57

Hi rs

"There is a chance to be part of a neuroSAFE trial where 50% of candidates have tissue analysed during the operation which may give some chance of some nerve sparing if it shows good margin but in the initial consultation the surgeon didn't seem hopeful of nerve sparing, I think based on MRI scan - I guess an advantage of surgery is they can get a better view of tumour / budging actually during the operation which will be clearer than MRI."

I can't think of any reason why you wouldn't jump for this option. My husband had to pay privately for this procedure and so far its had some very positive outcomes. The thing is, there is nothing to lose by having tissue analysed whilst in surgery. 

User
Posted 01 Jul 2019 at 20:39
Thanks for your replies Lyn & Maria, Yes I agree its a no-brainer to at least take the NeuroSAFE trial if I go the surgery route, the extra form filling and questionnaires would be well, well worth it if I got a better outcome. Of course its only a 50% chance I would be a lucky one (and I would never be told on what basis the nerve sparing or not decision was taken). I guess I could look into a private option for 100% chance of in-op analysis.

Richard

User
Posted 01 Jul 2019 at 21:03
Thanks to person who sent me a private message - I very much appreciate your helpful comments. I tried to reply but apparently I haven't participated on these public forums enough yet to be allowed to reply with a private message.

BTW I'm based in Swindon which means NHS surgery is in Bristol and Radiotherapy in Oxford

Richard

User
Posted 05 Jul 2019 at 21:33

Hi, This sort of treatment has been done on skin cancer for some time(1938). Usually in the US.  It's called MOHS surgery and they take skin and test it until they find cancer free. In the UK they do a 4mm+ margin round what they see. (They did a few years ago.)

So it's tried in some ways. Yet I'd be cautious about whether they're certain it's cancer free in the prostate. I don't know how they can be as they can't guarantee a post op biopsy result. So for someone to take a little less tissue based on a check during an operation sounds like adding risk to risk. It's not a no brainer to me.

Edited by member 05 Jul 2019 at 21:34  | Reason: Not specified

User
Posted 08 Jul 2019 at 11:46
Hi Peter,

Thanks for your take on this. I can see that as it is a trial in the NHS, the long term info is not complete to prove that the in op pathology is as good as post -op, and that by its nature nerve-sparing will be cutting margins - it needs to be based on good info as to extent of tumour.. However I have read somewhere that early results of Neurosafe are promising

Richard

Richard

User
Posted 11 Jul 2019 at 21:45

It is not an easy decision to take, myself and two of my brothers diagnosed at various dates throughout 2018, all have received their elected treatment.

From my own viewpoint I opted for surgery (Robotic), the decision has to be our own

! My wife is medically trained and whilst we discussed the options given she did not try to influence me at all.

I had pretty much made my mind up on being informed of where the consultants suggested my cancer was at, contained within the prostate and no signs of lymph or bone transfer. Given this and my engineering logic "Removal" was the chosen route.

My elder brother opted for Brachytherapy and my younger brother the same as myself. Each option has its Pro's and Con's, that is why it has to be our choice, what do you feel comfortable with and what don't you. I am sure that no matter which option you opt for it will be the RIGHT choice!

I have no regrets concerning my choice and recovery has gone well.

 

Be positive and remain strong👍👍

 

 

User
Posted 12 Jul 2019 at 10:41

Originally Posted by: Online Community Member

It is not an easy decision to take, myself and two of my brothers diagnosed at various dates throughout 2018, all have received their elected treatment.

From my own viewpoint I opted for surgery (Robotic), the decision has to be our own

Quote:

I endorse that completely. I recognise that some people will want a "steer" but the procedures are so different as are the side effects. In my case active surveillance was "not recommended" Brachytherapy in terms of seeds was off the table because of the stage of my cancer so 3 options were presented - surgery, high dose brachytherapy with EBRT as a top up,  and EBRT with adjuvant Hormone Therapy. I then had to choose and that's as it should be difficult though that decision might be. 

Edited by member 12 Jul 2019 at 10:43  | Reason: Not specified

 
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