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User
Posted 07 Oct 2018 at 10:36

Heizenburg here,

firstly, I have posted this same message on the Macmilan site - so apologies if you have read it alreadu

I was diagnosed with prostate cancer 2 x months ago. I suppose I am 'intermediate' with a Gleeson score of 7 (3/4)

My PSA was 10 ... 6 x months ago, now 13.4.  My MRI scan showed the cancer to be encapsulated in the prostate. 

Based on this information, it is now for me to decide which treatment to take - surgery - it would be the robotic method, or radiation - probably external beam radiotherapy.

But how to decide which treatment to take?  Both, as I understand, are equally effective in removing the cancer, and preventing a return. There are some differences in the side effects- temporary and permanent, but they must vary considerably from person to person. 

I was expecting a treatment to be recommended by the specialist/ consultant, based on my specific condition, but it appears that with 2 x comparable treatments available to me, the decision is mine. 

I have met or spoken with 2 x ex 'surgery' patients, and 1 x ex 'EBR'  patient, and they have all been happy with their respective treatments. All were recommended a certain path though, for different reasons. 

Can anybody give some advice on how to make this decision? 

Possible factors are: 

Other medical conditions prevent surgery being an option

Age - It seems that older men tend to opt for RT over surgery. I am 67 so not sure how I fit in there.

Personal circumstances. I am married. Work full time. Have my teenage son living with us. I lead a pretty active life.

Any guidance would be appreciated

Thanks, 

Ian

User
Posted 07 Oct 2018 at 11:39

Hi Ian, it seems like you already have the situation under control. You are in a very similar position to me, and have the same choices I had.

For me, the deciding factor was "what's the worst that can happen?"  being incontinent either temporarily or permanently would be a disaster. Surgery has a higher risk, it didn't matter by how much, it would be unacceptable (FOR Me) 

I didn't fancy any more surgery either, so radiotherapy it was for me. 

But your hang ups will be different for me. You can be pretty certain that you would not be offered options which don't have an equal chance of success, so you might judge it on side effects and potential consequences. 

Good luck with your choice. 

 

User
Posted 07 Oct 2018 at 19:10

If the cancer is thought to be contained younger men more often have surgery whilst older men have RT. The thinking is that younger men have longer than older men for their cancer to develop over the years. With the RT option there is greater risk of the tumour regenerating in years to come and also the risk in the long term, maybe 20 or so years of the radiation initiating other cancers. This is less likely to be a problem for older men who would expect fewer years. Also surgery can be more traumatic for order men. This may help explain the prevalence of type of treatment to age. You are more in the middle where the balance between the treatments is more similar numerically.

Regardless of what you know about PCa, it is still a difficult decision to make but it might help you if you download the 'Toolkit' or obtain a hard copy of it from the publications department of this charity.

I think Brachytherapy is becoming a well regarded form of RT and for suitable men the results seem better at destroying cancer than just External Beam. However, there are two kinds of Brachytherapy and where considered appropriate either can be supplemented by External Beam with good effect - this is a generalized observation if you are looking at RT and not a recommendation. The treatment decision where there is a choice has to be yours; much depends on the variables and how you regard risk.

Edited by member 07 Oct 2018 at 19:14  | Reason: Not specified

Barry
User
Posted 08 Oct 2018 at 19:49

Hi Ian,  I had a similar condition, same age, 2 years ago.  I was keen on surgery for the speed of getting treatment and only 2 days in hospital.  Although I wavered at worry about the op.  The rational answer was going to sleep for 3hrs and waking up with no prostate.  There is then about a month of healing with probably another month of stomach muscular recovery and it took a total of 5 months to get 99% continent and 2 years later I'm only just getting sexual full function.  We're all different.  It was no major inconvenience, I went on holiday for a month 8 weeks after the op.

Yes older men don't get offered surgery as it takes some strain being sloped at about 30degrees downwards.  Also if you're too heavy you won't be offered surgery unless you can lose a lot fast.

I wouldn't delay too much and try to decide what you want at an appointment rather than going away and thinking about it.  If an op you might want to get it in well before Christmas.  My op was a week before Christmas, I was very keen.

Regards

Peter

User
Posted 08 Oct 2018 at 20:46
Just adding a note that only men having keyhole / robotic RP are tipped head down. Men having open surgery stay on their backs :-) Being tipped up tends to only rule out men with heart problems. Previous abdominal surgery can be a problem for keyhole RP but it depends where the scar tissue is; my husband had scar tissue from an appendectomy so was advised to have open RP (there were a couple of other reasons that he chose open, though) and sometimes men that have mesh implants for a hernia cannot have the laparoscopic/ robotic RP.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2018 at 09:17

Ian, don't delve too deeply at this stage, and don't try to come to a decision. You will find your mind will become clearer after your discussions with the consultants, they will probably answer some questions you haven't even thought of yet. 

You won't need to make a decision on that day, either. They will expect you to leave them and take time to mull it over. And let them know in due course. 

Just take a list of your concerns with you. 

User
Posted 09 Oct 2018 at 10:14

If you click on each person's online name, it brings up their profile so that you can read about their diagnosis, treatments had, etc.

Don't assume robotic RP is better than open surgery; they are just different. Open surgery has slightly better outcomes in terms of continence, erectile function and negative margins, and slightly less chance of recurrence. Robotic is more convenient because it requires less time in hospital and post-op recovery tends to be quicker so less time off work. 

Edited by member 09 Oct 2018 at 10:42  | Reason: Not specified

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

User
Posted 10 Oct 2018 at 09:08
Again, so much of this is down to the skill of the surgeon, as regards to success rates and post-operative recovery. “My” surgeon, who has over 3000 prostatectomies under his belt has more or less abandoned open surgery, except in difficult cases in favour of robotic laparoscopic procedures.

I am almost in tears when I read some of the post-operative problems some guys on here suffer, but of course that would depend on how far the tumour had spread in the first place.

No 1 tip, from someone who has been there, and had it done, check out who is going to do it. And as Matron says, check out results and performance statistics for whichever surgeon you end up with, before signing any forms!

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User
Posted 07 Oct 2018 at 11:39

Hi Ian, it seems like you already have the situation under control. You are in a very similar position to me, and have the same choices I had.

For me, the deciding factor was "what's the worst that can happen?"  being incontinent either temporarily or permanently would be a disaster. Surgery has a higher risk, it didn't matter by how much, it would be unacceptable (FOR Me) 

I didn't fancy any more surgery either, so radiotherapy it was for me. 

But your hang ups will be different for me. You can be pretty certain that you would not be offered options which don't have an equal chance of success, so you might judge it on side effects and potential consequences. 

Good luck with your choice. 

 

User
Posted 07 Oct 2018 at 16:03
Thank Tykey,

next step for me is to get a meeting with both a radiotherapist and a surgeon and get as much detail on the treatment / the operation - specific to me, as possible.

Trouble is, you will never know how you as an individual will react to the treatment / the operation in the short and long term.

Somebody did suggest tossing a coin.....

Good luck with your treatment,

Ian

User
Posted 07 Oct 2018 at 16:56

That's true! You just make a decision on what you know, and stick with it. But the good news is that either decision is likely to result in success. 

User
Posted 07 Oct 2018 at 16:57
Hi H,

What kind of biopsy did you have?

Cheers, John.

User
Posted 07 Oct 2018 at 19:10

If the cancer is thought to be contained younger men more often have surgery whilst older men have RT. The thinking is that younger men have longer than older men for their cancer to develop over the years. With the RT option there is greater risk of the tumour regenerating in years to come and also the risk in the long term, maybe 20 or so years of the radiation initiating other cancers. This is less likely to be a problem for older men who would expect fewer years. Also surgery can be more traumatic for order men. This may help explain the prevalence of type of treatment to age. You are more in the middle where the balance between the treatments is more similar numerically.

Regardless of what you know about PCa, it is still a difficult decision to make but it might help you if you download the 'Toolkit' or obtain a hard copy of it from the publications department of this charity.

I think Brachytherapy is becoming a well regarded form of RT and for suitable men the results seem better at destroying cancer than just External Beam. However, there are two kinds of Brachytherapy and where considered appropriate either can be supplemented by External Beam with good effect - this is a generalized observation if you are looking at RT and not a recommendation. The treatment decision where there is a choice has to be yours; much depends on the variables and how you regard risk.

Edited by member 07 Oct 2018 at 19:14  | Reason: Not specified

Barry
User
Posted 08 Oct 2018 at 18:28

Hello John, 

not sure the biopsy had a name, but the method was pretty straightforward. Probe up the back passage, and then 10 x samples taken on each side by firing needs from the probe. Not a pleasant experience. 

This gave me the Gleeson result of 3/4 = 7. MRI scan last month showed cancer contained in prostate.  Hoping it stays there, 

Cheers, 

Ian

 

User
Posted 08 Oct 2018 at 18:42

Thanks Barry, 

that all made sense. Edging towards surgery at this time, but plan to meet both a surgeon and an oncologist shortly to talk through what exactly their treatment would entail. 

However, there appears to be another potential or even probable side effect with surgery - penis shortening. Apparently, the urethra is cut from the bladder at the start of the procedure and then tied back up at the end - the result is that the old fellow is pulled back in. This would be OK if I had a big one to start with!  Will need to bring this one up with the surgeon. 

Cheers, 

Ian

 

 

User
Posted 08 Oct 2018 at 18:58
Be aware that radiotherapy will also cause penile shrinkage, especially if it is partnered with hormone treatment. And it isn't just shortening; girth is also usually affected with both treatments.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Oct 2018 at 19:49

Hi Ian,  I had a similar condition, same age, 2 years ago.  I was keen on surgery for the speed of getting treatment and only 2 days in hospital.  Although I wavered at worry about the op.  The rational answer was going to sleep for 3hrs and waking up with no prostate.  There is then about a month of healing with probably another month of stomach muscular recovery and it took a total of 5 months to get 99% continent and 2 years later I'm only just getting sexual full function.  We're all different.  It was no major inconvenience, I went on holiday for a month 8 weeks after the op.

Yes older men don't get offered surgery as it takes some strain being sloped at about 30degrees downwards.  Also if you're too heavy you won't be offered surgery unless you can lose a lot fast.

I wouldn't delay too much and try to decide what you want at an appointment rather than going away and thinking about it.  If an op you might want to get it in well before Christmas.  My op was a week before Christmas, I was very keen.

Regards

Peter

User
Posted 08 Oct 2018 at 20:46
Just adding a note that only men having keyhole / robotic RP are tipped head down. Men having open surgery stay on their backs :-) Being tipped up tends to only rule out men with heart problems. Previous abdominal surgery can be a problem for keyhole RP but it depends where the scar tissue is; my husband had scar tissue from an appendectomy so was advised to have open RP (there were a couple of other reasons that he chose open, though) and sometimes men that have mesh implants for a hernia cannot have the laparoscopic/ robotic RP.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2018 at 06:48

Lyn,

you have made a bleak situation even bleaker. Still, it is better to be aware of all these facts. Is this the same for Robotic surgery and open surgery - the latter of which I thought caused more damage.

Did not know about the reclined position either - so for robotic, your are lying on your back with your head lower than your feet - at a 30 degree angle!  what is the purpose of this?

I have booked myself in for surgery - probably December before I get a slot. Thought I would understand more about both  surgery and RT while I wait. Not sure if I am getting much comfort from the process though.

As for Kierkergaard, well if I do meet him in another life, I can tell him which direction to go!

Cheers,

Ian

User
Posted 09 Oct 2018 at 06:55

Barry,

as a matter of interest, what treatment are you planning, or have done already? and what pushed you in that direction?

I may have seen another post of yours somewhere - what age are you? personal circumstances...?

From the photo you look in pretty good shape- - not sure what you are doing / what you are wearing, but if it is in the privacy of your own garden ... who cares!

Do you agree with the posts that Lyn has made - based on personal experience?

Cheers,

Ian

 

User
Posted 09 Oct 2018 at 07:11

Hello Peter,

thanks for responding.  I have in fact put my name down for surgery last week - but will up to 2 x months as there is a waiting list.                            It will be the robotic method, which has been used here (Aberdeen) for some time now

In the meantime I am doing more research, and posts from people like yourself are very educational.

I have not ruled out RT treatment, but have yet to be convinced that it is the best for me.

Now I am hearing some uncomfortable facts about the surgery. Tipped up during the operation, incontinence, penis shrinkage, ED for a fairly long period etc...not good to hear. If it is not too personal a question - did / does PS affect you?

Still, your experience has given me some optimism - I have also met two ex patients locally who had surgery, and were happy to go that way.

Best regards,

Ian

User
Posted 09 Oct 2018 at 09:17

Ian, don't delve too deeply at this stage, and don't try to come to a decision. You will find your mind will become clearer after your discussions with the consultants, they will probably answer some questions you haven't even thought of yet. 

You won't need to make a decision on that day, either. They will expect you to leave them and take time to mull it over. And let them know in due course. 

Just take a list of your concerns with you. 

User
Posted 09 Oct 2018 at 10:14

If you click on each person's online name, it brings up their profile so that you can read about their diagnosis, treatments had, etc.

Don't assume robotic RP is better than open surgery; they are just different. Open surgery has slightly better outcomes in terms of continence, erectile function and negative margins, and slightly less chance of recurrence. Robotic is more convenient because it requires less time in hospital and post-op recovery tends to be quicker so less time off work. 

Edited by member 09 Oct 2018 at 10:42  | Reason: Not specified

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

User
Posted 10 Oct 2018 at 06:56

Lyn,

you seem to be very knowledgeable in these matters. Can you explain how HT and RT treatment causes this physical 'reduction' to take place?

I am starting to think that a complete sex change operation might be an easier option!

As regards your post on the different types of surgery, I take your point that you are out of the hospital / back to work quicker, but my understanding is that it is more accurate- the work is magnetised., and the surgeons do not get fatigued as there are sitting down.

I would have expected these factors to all contribute to an improved outcome.

Cheers,

Ian

 

 

 

 

User
Posted 10 Oct 2018 at 07:00

Tykey, yes, good advice. I feel I am getting pulled in all directions just now. I need to back off a bit. Hope to meet with specialists this week

Thanks,

Ian

User
Posted 10 Oct 2018 at 07:20

Hello again Peter,

I was heartened by the progress report that you have in your profile. If I can emulate that I will be very happy.

What I noticed also was the fairly quick progress you made through the various tests.  In comparison I have been on a slow 'process'

My initial PSA test was in March - 9.9  (need to confirm exact date)

Waiting one month for a second PSA test - which confirmed it was high - 10.1.

Then waited at least 10 x weeks for the Biopsy - in mid July. 

Met specialist and was given the news on 3rd August - Gleeson of 3/4  T2C.

Had MRI scan ~6 x weeks after biopsy (as standard to allow prostate to settle after biopsy) on 4th September.  

Received results of MRI scan on 25th September - cancer contained within prostate. (Looking for more detail on next visit this week hopefully)

Booked in for surgery - but waiting list, so currently estimated to be in December. I have stated that I would be available for any cancellation.

I am getting reassurances from medical people that this cancer is slow growing, so no need to be anxious/in a rush, but a voice in my head is telling me otherwise.

Best wishes for the future,

Ian

 

 

 

User
Posted 10 Oct 2018 at 07:32
Hi Ian, I had my prostatectomy via the uncommon Retzius-sparing technique, which still involves being suspended almost upside down like a bat for three hours.

I had no shoulder pain afterwards, and very little pain at all anyway.

Click my profile for full details.

Cheers, John.

 
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