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HT/RT or Surgery ?

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User
Posted 29 Oct 2015 at 19:05

Hi all


As some of you will know I have been I have posted a few conversations lately and would appreciate any advice on my query.


I am 55 and relevantly fit, I have G9, PSA31, T3b, bone scan clear, MRI scan not showing any damage outwith prostate although the cancer has left the capsule and was aggressive.


I saw the consultant on Tuesday who told me that there was only one surgeon in my area that would attempt any surgery but unfortunately he was off sick. Due to the aggressiveness of the PCa no other surgeon would look at it. he went on to tell me that 6 months HT followed by 7 weeks RT and 2 years HT would be my best option. I settled on this as the best for me.


To my surprise I received a call from the surgeon's secretary called me to ask if I would meet with him to discuss surgery, he had started back work and was willing to talk to me. I agreed and met him today where he told me that he was willing to carry out the surgery even though my PCa was in the high end of the scale. Now I am due to receive surgery before the end of the year. He did state that the surgery would not cure the cancer on its own as there was a good chance that the PCa had spread and RT would be required.


I know that people on this forum have been on different journeys and I have received great advice and help from all but I would appreciate any information from others who have been in a similar situation as myself, who cannot make up their mind either way.


I still have to visit the uncologist who will then give me the benefits of not going for surgery and going down the HT/RT route instead. when I asked the surgeon on what he would do he replied' quite rightly' that he was a surgeon so surgery would be the way and he stated that the radiologist would probably go down the radiotherapy route so the decision was mine.


All that I wanted was for someone to give me a straight down the line answer.


Any help gratefully received. Sandy

User
Posted 29 Oct 2015 at 23:17
Hi Sandy

We have all been where you are now and had to make the decision of which treatment path to pursue. I am afraid whichever path you take there isn't a free ride with either method.

I took a very unorthodox path myself which some people would disagree with but it was my body and my decision to make, and if you were to ask me now:

Do I regret it NO
Am I cured NO
Do I still have options YES

My way of coming to a conclusion was to priorities my aims:

1 Life
2 incontinence
3 Erection

Whatever path you choose commit to it and have no regrets. I agree with the saying " don't regret what you have done, only regret what you haven't".

Good luck

Roy
User
Posted 30 Oct 2015 at 01:01

Sandy,
Outcomes are uncertain regardless of treatment. In the case where it is not thought surgery will do the job by itself, even with the addition of RT and HT it may not eradicate all the cancer but it may constrain it. But with still having a prostate, albeit a radiated one, there is a possibility of recurrent cancer within it. So the question is, do you opt for the potentially more severe side of surgery compounded by HT/RT for possibly a better outcome or just go the HT/RT with less risk of incontinence.

A friend of mine had surgery but it did not remove all his cancer. He subsequently had HT/RT and his PSA is insignificant after 8 years post treatment. He had open surgery and lost a lot of blood and experienced severe fatigue for quite some time. In hindsight he wishes he had just had HT/RT. But at least the combined treatment in his case worked well. Where surgery needs to be supplemented with HT/RT it comes down to whether a man considers the possible better result of combined treatment is worth potentially worse side effects.

Barry
User
Posted 30 Oct 2015 at 10:46

Sandy,


I didn't word that very well. It didn't take 8 years to arrive at his negligible PSA, the low level was arrived at years before that and I meant it was still negligible after about 8 years post treatment. Incidentally, he regularly drinks 'POM' (available from some supermarkets). Whether this has helped can't be known but there are others who think this is beneficial.

Edited by member 30 Oct 2015 at 10:47  | Reason: Not specified

Barry
User
Posted 30 Oct 2015 at 17:41

Hi Sandy,


I've  been reading your thread and can only relay my personal experience to you.

I decided to opt for surgery even though it was explained to me that there was a chance that I would need RT after .....

At my meeting with the surgeon before I made my final decision as to which treatment path to take I asked the question, " If I may need RT after surgery, why not just opt for RT as my primary treatment? "

His answer was that the primary tumour would have been removed / debaulked and if I needed RT after it would just to ' mop up ' any stray cells that may be left behind.

How true this is I have no idea , but I was prepared to accept his judgement.....

Up till now I have been fortunate and have not needed any further treatment after surgery

My clinical staging and Gleason score at the time was not as advanced as yours, so my decision was slightly easier.....

Wishing you well for a good outcome

Luther

User
Posted 30 Oct 2015 at 17:54
Hi Luther
Yeah very similar background apart from some of the grades.
Glad you are doing well with no need for RT.
Sandy
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User
Posted 29 Oct 2015 at 19:58

I wholly agree with some others on this one ! And I think I have already told you my point of view. No way would I want surgery if I knew HT/RT was ahead anyway. It's not pleasant. I had surgery for cure but it failed. Edamo told me " at least the motherload is removed with surgery " and I guess she's right , but I certainly would have avoided it if I knew where I'd be now.
Best wishes Chris

User
Posted 29 Oct 2015 at 20:17
Thanks Chris
I know from your posts how difficult the journey has been for you and i
Really appreciate your response.
I am totally confused on how to plan ahead.
I've read many posts that have been successful post RP and others not so successful.
It's just this surgeon has a wealth of experience with high grade PCa prostate removal but still undecided due to the need for RT post op.
Sandy
User
Posted 29 Oct 2015 at 20:26

Crikes it's difficult Sandy. He sounds the man for sure. I think they are mostly pretty good but I checked on my surgeons record anyway. But it didn't help. I can't but help think if my final MDT meeting had known how aggressive my cancer was , then they would have cancelled surgery as it was too late ! I couldn't make my mind up either. Everyone on here has struggled tbh. Maybe someone more qualified than me can guide you , but at the end of the day it is your decision only.
Chris

User
Posted 29 Oct 2015 at 20:48
Hi Chris
You said that you had hand lapiscopery. My surgeon has told me that my would be would be open surgery with everything removed.
Do you know if these are the same procedures.
Sandy
User
Posted 29 Oct 2015 at 21:01

Again I'm no expert but I believe " open " gives far better access and assessment and removal. Also better vision to allow nerve sparing and Incontinence sparing. Downside is potential blood loss increase , increased infection risk due to more exposed flesh / cutting , and also increased healing time and risk of rupture / hernia due to a long incision. But in the right hands obviously all should be good

User
Posted 29 Oct 2015 at 21:20
Thanks Chris
Appreciate your comments.
Sandy
User
Posted 29 Oct 2015 at 21:39

Hi Sandy I had open and then RT I have recovered well my continence is back and am feeling fit and well and getting feelings down below, I was offered key hole but had got to know surgeon so had feeling of trust so went with open as he only did this the stay in hospital was 3 nights had me walking next day after op ,so over all my experience was positive and no regrets with my choice . good luck with what ever route you go Andy

User
Posted 29 Oct 2015 at 21:58
Thanks Teddy
My PSA is 31, G9 and T3b but surgeon really confident about surgery but did say that RT would be needed post op.
Just decisions decisions as it is getting to the stage when something needs to be done.
Sandy
User
Posted 29 Oct 2015 at 23:17
Hi Sandy

We have all been where you are now and had to make the decision of which treatment path to pursue. I am afraid whichever path you take there isn't a free ride with either method.

I took a very unorthodox path myself which some people would disagree with but it was my body and my decision to make, and if you were to ask me now:

Do I regret it NO
Am I cured NO
Do I still have options YES

My way of coming to a conclusion was to priorities my aims:

1 Life
2 incontinence
3 Erection

Whatever path you choose commit to it and have no regrets. I agree with the saying " don't regret what you have done, only regret what you haven't".

Good luck

Roy
User
Posted 30 Oct 2015 at 01:01

Sandy,
Outcomes are uncertain regardless of treatment. In the case where it is not thought surgery will do the job by itself, even with the addition of RT and HT it may not eradicate all the cancer but it may constrain it. But with still having a prostate, albeit a radiated one, there is a possibility of recurrent cancer within it. So the question is, do you opt for the potentially more severe side of surgery compounded by HT/RT for possibly a better outcome or just go the HT/RT with less risk of incontinence.

A friend of mine had surgery but it did not remove all his cancer. He subsequently had HT/RT and his PSA is insignificant after 8 years post treatment. He had open surgery and lost a lot of blood and experienced severe fatigue for quite some time. In hindsight he wishes he had just had HT/RT. But at least the combined treatment in his case worked well. Where surgery needs to be supplemented with HT/RT it comes down to whether a man considers the possible better result of combined treatment is worth potentially worse side effects.

Barry
User
Posted 30 Oct 2015 at 08:16
Hi Barry
Good news with your friend's psa, albeit it has taken a few years. Would be interested to find out how he is feeling today.
My case is similar in respect that I have been told that open surgery would need to be followed by RT.
Due to my age (55) surgeon has high hopes.
Like you said if prostate left in place then thrre is a chance of return of PCa further down the line, which I didn't want.
cheers
Sandy
User
Posted 30 Oct 2015 at 10:46

Sandy,


I didn't word that very well. It didn't take 8 years to arrive at his negligible PSA, the low level was arrived at years before that and I meant it was still negligible after about 8 years post treatment. Incidentally, he regularly drinks 'POM' (available from some supermarkets). Whether this has helped can't be known but there are others who think this is beneficial.

Edited by member 30 Oct 2015 at 10:47  | Reason: Not specified

Barry
User
Posted 30 Oct 2015 at 13:40

Sandy

I opted for surgery mostly because my mind set at the time was to get rid of it as quickly as possible. I've not had the easiest of rides since (culminating in last week's implant of an artificial sphincter) but if asked to decide again, even with all the knowledge and experience I have amassed over the last five years or so, my choice would not have been any different.

Unfortunately, as said above, there is no "ideal" route - each has its downside and upside.

Also, sorry but we cannot recommend because certainly the majority of us are not qualified medical practitioners. Our knowledge comes from having and dealing with prostate cancer. It has got to the point where, when talking to my GP about the subject, sometimes he asks me about the options and treatments rather than vice versa....

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.
User
Posted 30 Oct 2015 at 16:00
Hi Tony
Looking at your post you certainly have had a rough ride.
The surgery route was my first option too which was initially took away from me then reintroduced.
The consultant was worried about the aggressiveness of PCa but surgeon has a good record with high level PCa (G8-G10) and he said it is duable, so will put my trust in him.
Looks like an early Xmas present for me as they tell me I will be in for surgery in a few weeks.
Sandy

User
Posted 30 Oct 2015 at 16:39

Best of luck Sandy with your surgery,
Andy

Edited by member 30 Oct 2015 at 17:26  | Reason: Not specified

User
Posted 30 Oct 2015 at 16:47
Sandy
this is always one of the hardest questions I see posted here. Sometimes when there are no options the decision is made for you. All you can ask here is for other people's experiences and how they made their choice.
Roy has made a wise post as he always does. prioritise the things that matter the most to you, most Men who post here say Living comes first. Of coursee as with all things in life there are exceptions.

You have been told up front that you will need adjuvant RT if you have surgery and RT if you don't so that kind of makes that treatment choice already.

I have read accounts from so many Men on here and a large proportion of them say they just want the cancer out of their body as quickly as possible. Those that do not have surgery as an option often say they wish they had been given that choice. As Chris quite rightly said I am a believer of getting rid of the motherload if you can, but of course radiation can also do a pretty good job as well.

Your surgeon wants to operate openly, that sounds like a wise suggestion as he can visualise a lot better and as Barry has said this can be a big advantage in removing any close proximity tissue that the cancer may have broken through to. It gives a better view of nerves that need to be spared if possible to retain full or partial erectile function and of the muscle and nerves that help control urinary function.
The histology report that comes after a surgical removal sometimes changes the clinical staging but unfortunately that can go either way.

I know if I had a partner diagnosed as you have been I would always say living was number one and everything else could be worked on later even if compromises had to be made. I would totally support surgery but would respect and support any decision because at the end of the day this is something you alone have control over.

For me the words "once you have made your decision go for it, do not look back and have no regrets" are wise counsel but you have to remember to stick with those words even if things do not go entirely to plan.

I wish you all the very best
xx
Mo
User
Posted 30 Oct 2015 at 17:00
Hi Mo
My surgeon said practically the same as you as get rid at source and deal with what comes later.
Thanks to everyone for their support and good wishes.
It's comforting too know that there is somewhere to turn for advice at short notice.
Good luck to everyone in their own battles.
Sandy
User
Posted 30 Oct 2015 at 17:41

Hi Sandy,


I've  been reading your thread and can only relay my personal experience to you.

I decided to opt for surgery even though it was explained to me that there was a chance that I would need RT after .....

At my meeting with the surgeon before I made my final decision as to which treatment path to take I asked the question, " If I may need RT after surgery, why not just opt for RT as my primary treatment? "

His answer was that the primary tumour would have been removed / debaulked and if I needed RT after it would just to ' mop up ' any stray cells that may be left behind.

How true this is I have no idea , but I was prepared to accept his judgement.....

Up till now I have been fortunate and have not needed any further treatment after surgery

My clinical staging and Gleason score at the time was not as advanced as yours, so my decision was slightly easier.....

Wishing you well for a good outcome

Luther

User
Posted 30 Oct 2015 at 17:54
Hi Luther
Yeah very similar background apart from some of the grades.
Glad you are doing well with no need for RT.
Sandy
User
Posted 31 Oct 2015 at 00:41

Just to clarify - you mention that the surgeon said everything would be removed so i am assuming it will be non-nerve sparing? Did he explain the implications?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Oct 2015 at 08:38
Hi Lyn
Yes he did explain that due to the nature of the beast, as he called it, then I may have to have help later on in life.
He explained about incontinence and ED, such as the need for tablets etc, he also explained that I would need RT post op and again about the side effects.
He did say that he would do his best to try and save nerves and with his track record he has proven that over the years to be successful in high grade cancer operations.
Still not 100% as I have still to meet with uncologist to talk about RT but surgery looks to me the bwst course of action for me.
Sandy
User
Posted 31 Oct 2015 at 08:44
I was going to say the same Lyn. I also presume he has been offered open surgery as that is the surgeons area of expertise. Any of the surgical routes now offer nerve sparing...node removal etc. However the surgeon has said he will remove everything. My surgeons view on that is that he can guarantee he can't put anything back.

The risk of two forms of radical treatment are the risk of two lots of serious side effects.

When I went for surgery it was with the belief they would get it. There is always the thought that if they don't RT can be used but I really hoped that wouldn't be the case.

If they had told me I would definitely need RT following surgery I am not sure I would have bothered with the surgery. Having said that this is what the Radicals trail is trying to determine for high risk men.

Hard decision Sanders but you need as much information as possible from the consultant and oncologist to be able to make an informed decision. Once made dont look back

Bri
User
Posted 31 Oct 2015 at 09:58
Hi
Yeah the surgeon did state that because he was an expert in his field he would recommend surgery whereas the uncologist would probably opt for RT/HT. He stated that due to the nature of the beast within then RT is a 90% certainty.
It's just the thought of the cancer returning to the prostate at a later stage, I know there is still a chance of cancer returning anyway regardless of which path I took.
The only reason the surgeon is doing the aurgwry is because of my age and fitness.
Like everybody else who has been through or going through this, its a daunting time ahead.
Sandy
User
Posted 31 Oct 2015 at 10:53

The oncologist told me there was an 80% chance of HT /RT getting rid of the cancer. The surgeon said there was a 80-90% chance that surgery would get rid of the cancer.

So I had a difficult choice opted for surgery but still need RT.

You have been told there is a 10% chance of surgery getting rid of the cancer. Ask the oncologist what percentage they feel HT/RT will offer you.

Bri

User
Posted 31 Oct 2015 at 11:44
Thanks British
Good advice appreciate it. Will definitely ask that question when I meet them.
Sandy
User
Posted 31 Oct 2015 at 13:08

Unfortunately those long term 100% incontinent rarely post as they could well give their insight to what’s it’s like, perhaps a post asking such guys?

So 80% here 90% there, it’s just a number which will vary from each consultant in whatever field so should that influence any decision, each to their own on that?

I repeat where I started if you’re prepared to put up with whatever side effects then consider hitting it hard. RP followed by as soon as possible (i.e. not waiting for any PSA rise) RT followed by or with HT, not discounting chemo.

So perhaps the question you should be asking yourself is what side effects am I prepared to put up with to live possibly longer?

I make no apologies for a hard post as getting to grips with what’s most important in your life might help you choose.

I wish you well and point out RT/HT as regards surviving 11 years served me well

Ray

User
Posted 01 Nov 2015 at 02:18

Hi Ray,


I guess you have hit on an important point, guys don't like to admit being incontinent let alone impotent!


In my case, first time around with the standard EBRT and 3 year HT, it took a good 12 months to recover sexually, and even then sex was a struggle, would I stay hard long enough etc.  But when I was asked at follow up appointments had I regained sexual function I replied yes, because without going into graphic detail I had regained sexual functions of sorts.  So I guess I count as one of the 60%, or whatever my oncologists batting average is, of those who have regained sexual function after RT.


Same with the salvage HDR Brachytherapy, 9 months on and I am continent, in the sense that I don't wet the bed or need to wear pads.  However, I daren't wear light coloured trousers if I am going out for the day, because chances are despite Tamsulosin I will end up dribbling if I am not careful.


So I think all of these treatment averages dividing blokes into continent or incontinent, virile or impotent, miss the point, because while I am still technically virile and continent I am no where near as virile and continent as I was before treatment.


:)


Dave 

User
Posted 01 Nov 2015 at 15:11

Dave you make the very important point on what medics would classify as not being incontinent and impotent and what guys living with one or both do. Perhaps something guys should clarify with medics when deciding on thier treatment path

That last paragraph is the background to my sometimes frustration when I read such as "deal with the side effects after treatment" as if they can be dismissed with the wave of hand as somekind of non-event. I wonder just how many those have actually lived with them for a few years and more knowing full well it isn't going to improve.

Ray

Edited by member 01 Nov 2015 at 15:12  | Reason: Not specified

User
Posted 01 Nov 2015 at 15:33

For anyone surprised by DK's post, the definitions of 'continent' and 'potent' (as in 'not impotent') after treatment for PCa as far as NHS data is concerned:-
Continent - using one pad or less per day at 12 months post-treatment
Potent - able to get an erection either naturally or with chemical / mechanical means (ie with tablets, injections or a vacuum pump) 12 months post-treatment

'Potent' therefore has nothing to do with whether or not the man can get sufficiently erect for penetration, or whether he has regained enough length/girth for penetration. And a man who has urinary urgency or who dribbles a little will be considered 'continent'.

I have posted this before but perhaps worth telling the story again of the first time we met Mr P and he spelt out the implications of surgery with John. He talked about the national stats for side effects and his own data but made it very clear that he believed many of his patients lie to him and say everything is working properly even if it isn't. Mr P uses the lifestyle questionnaire at every review appointment with patients - he told us that when he is asking about continence and ED, he asks the man but watches the partner's face because that gives him a truer picture of how well it is going.

Even though it was spelt out very clearly to us, John still believed that the side effects wouldn't happen to him because that must be about old men, mustn't it? It was therefore a huge shock to him to find that being young is not a magical protection.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Nov 2015 at 15:41

The comment about dividing men into virile/impotent is very important. I think the other thing that isn't always understood is the certainty of some side effects. Every man will be infertile after treatment, surgery means you will never ejaculate again (and radiotherapy means ejaculation will disappear immediately or reduce over time), almost all men will lose some length and girth and for many, the testicles get smaller. So all men (except those who go for AS) will find that sex is never the same as it was before. I worry sometimes that the ones who get distressed or frustrated with their perceived lack of progress are somehow imagining that 'success' will be getting back to how it was and they miss out on enjoying what is their new normal

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Nov 2015 at 16:45

Informative as ever Lyn :-)

I also take your point on new normal. Now when I was on HT which brought out my feminine side I would have agreed. However, and this took a number of years after HT ended my mind returned to my previous Virgo black or white mode. Thus now there is only one normal which was as it was before treatment.

Like John I was well informed on possible future long term side effects. However at 58, fit and healing unbelievable quickly after everday knocks and wounds I dismissed them as thanks but I'll be fine - you got that one wrong Ray :-)

To all those considering which treatment control or cure is the main aim and I wouldn't disagree with that but do take on board side effects can be life long.

Kind regards as always

Ray

User
Posted 01 Nov 2015 at 17:22
So much information to take in.
I take it you mean side effects from either surgery or RT, from what I have read there doesn't seem to be a favourable route ad both can carry significant side effects.
I have decided to go private for a consultation with another urologist to get a second opinion on the surgery route.
Sandy
User
Posted 01 Nov 2015 at 18:02

Yes treatment side effects. RT by itself can come with long term side effects but going on the decade here those guys have suffered far less than RT/longer term HT guys. One explanation on the ED front is with HT you can lose the desire so the use it or lose it is more difficult but not impossible to achieve. Again with HT as well fatigue is more of a longer term issue than RT alone. As regards longer term bowel issues all my screening tests to-date have been fine but others do suffer.

As no doubts mentioned before to you there is a need if matters do go pear shaped for you to be able to look back and be content you made the right decision at the time. You can help achieve that by gathering as much differing info as you can. A word of caution on your meet. Some guys here have researched to source the best surgeon with excellent track records yet are 100% long term incontinent and impotent. Please do not read that as being biased against surgery just be aware. Ideally you could do with meeting the Urologist and have access to him for a few days so you can ask more questions when the info you gained starts sinking in.

You were very unlucky to be on this path but you could also be very lucky and get away with at worst just short term issues.

Good luck

Ray

User
Posted 01 Nov 2015 at 18:12
Again thanks to all for comments and good luck messages.
As you say Ray I want to be able to say to my self in the future that I did what I thought was best at the time with no regrets.
Everything just seems to be starting to move fast now.
Sandy.
User
Posted 02 Nov 2015 at 11:14

Hi Sandy,


Your last post says it all '...Everything just seems to be starting to move fast now.'


For your own peace of mind, you need to take as much time as you want, to gather all of the information that you feel you need, to allow you to make an informed choice.


I am not recommending RP or RT thats not my role and its not wise.  I remember some years ago trying top decide whether to buy a Ford or a Vauxhall, all my mates who had Fords reckoned they were great, all my mates who drove Vauxhalls reckoned they were fantastic, it was only after I had bought a car that my mates started asking if it had the same faults and foibles as theirs.


I guess it is the same with PCa?


If you are worried and feel that you must do something to stop the cancer progressing, but can't make your mind up what treatment to go for, then HT is a good stop gap, in that 1 shot should stop the cancer in its tracks, the side effects are minimal in comparison to what you will get from long term HT and/or radical treatment.


The important thing is to make your decision in your own time and not feel rushed into anything.


:)


Dave

User
Posted 02 Nov 2015 at 11:44
Thanks Dave

Really appreciate your words of advice.
I know that no one but myself can decide and I wouldn't place that on a anyones head, even the surgeon said he wouldn't get involved in the decision making, he just gave me the facts on the pros and cons of surgery.
At the moment I going down the surgery route (75%) but no doubt once I meet the radiotherapy guy things could change.
Sandy
User
Posted 03 Nov 2015 at 07:04

Sanders going private for a 2nd opinion will be quicker but you are entitled to a 2nd opinion on the NHS. I saw three urologists and the oncologist twice

Bri

User
Posted 03 Nov 2015 at 07:07
Cheers Brian

I didn't know that.

Sandy
User
Posted 06 Nov 2015 at 20:01
Hi all
Just saw another urologist for 2nd opinion.
Basically he stated that due to my high PSA which is 32 I am in a very risky position. He did tell me that surgery would be a good option but the ED side of things could be drastic as in no more erections without an injection, don't fancy sticking a needle in my wee friend.
He also told me that RT is a 76% chance and there is a 60% chance that cancer will return later on in my lifetime, open surgery is the only way with no nerve saving.
Still to meet radiologist for his thoughts but I have told that I will now go for surgery on the 30th Nov instead of 8th Dec, Totally dreading the thought.
Sandy
 
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