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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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

 
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