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Treatment options decision

User
Posted 13 Dec 2015 at 15:34

I am 65 and have been diagnosed with prostate cancer T3a with a Gleason score of 8 - 4+4, my PSA was 9.7.  I have been given a week to decide which method to choose, the options of Robotic Surgery, External Beam Radio Therapy or High Dose rate (HDR) Interstitial Brachytherapy are open to me.

I have been reading information which gives details of possible side effects to to each of the options but does not give the advantages of each over the other options or the success rate comparisons I was told that radio therapy was just as good as surgery for a cure.  From reading HDRB seems a high risk option for bowel and bladder side effects more so than External Beam.  I would also like to know if the long term prognosis favors a particular treatment

It would be useful to have other peoples comments or experiences to help me make a decision.  This is quite stressful as the outcomes from your decision is something you have to live with for the rest of your life.

 

 

User
Posted 14 Dec 2015 at 07:15
Hi

My oh had very similar numbers to you. He opted for surgery. For him it was a no brainier. The main advantage of surgery is that, providing you have caught it early enough, you can be cured, and you have no prostate to worry about the cancer making a return.

Have you seen the surgeon and the oncologist? Ask them what they would do if they were you.

On pathology, oh had a Gleason 9 tumour. The surgeon said he absolutely made the right decision because of the high grade.

i cant offer any insight into the other options, but I'm sure someone else will be able to

Best wishes

Louise

User
Posted 14 Dec 2015 at 07:28
Dear Co2thai

Welcome to the forum, have you looked at the toolkit offered on this site ( available to download or to be sent via the post) which gives information upon all of the options available?

I think that all of us who have had to make this decision about treatment will remember what a difficult time that it is, weighing up the pros and cons, coupled with the shock of diagnosis, it is not easy to know what to do.

Not wanting to complicate matters - there are also trials that you may be offered too, additional to your treatment, depending upon which option that you choose.

Once you have read through the information on this site, it sounds like you could do to chat through the options with a professional and I understand that the specialist nurses on this site are excellent, or there may be a specialist nurse at your hospital that you can see.

I would gather as much information as possible from relevant sites.

My OH was G 7 T 3 b with some nodes affected so his RP was stopped mid operation and we had to go for RT with HT. I was told that the chance of cure was the same for both options, obviously there are different side effects, which you will read about.

There is no right or wrong option, just the one that you feel most comfortable with and once you have made a decision, you may find things a little easier as the doctors get to work against this thing.

beat wishes to you.

Alison

Edited by member 14 Dec 2015 at 07:29  | Reason: Not specified

User
Posted 14 Dec 2015 at 08:02

Good morning
I remember asking everyone on the forum the same question , on top of me researching all the treatments and toolkit. It's a very difficult choice and as others say only your choice in the end which you have to live with. I couldn't make my mind up between HT/RT/Bracchy , or the surgery. Truth being I didn't want treatment. I ended up being forced down the surgery route which I now regret
1 Because the cancer had already spread so I need RT / HT anyway
2 I'm completely impotent which I desperately didn't want
I was lucky to be continent almost immediately which was a bonus.
Lots of people are much more educated on here than me and will give good advice. As much as the thought of being irradiated makes me feel sick , I do wonder if it would have been a better route , especially mentally. And the long term effects can take over a year to emerge which gives another year of normality.
I just wish you all the best and am sorry you have had to find us. Good luck
Chris

User
Posted 14 Dec 2015 at 10:04
Hi

This is one of the most commonly asked questions, so much so I have asked PCUK to look at producing a specific guidance sheet for it.

There really isn't anyone who can advise you which route to take that has to be your decision. What others can do is give you a detailed explanation of what each option entails, some medical statistics on which ones have higher success rates and the potential side effects of each. These side effects can be temporary and short lived for some and for the less fortunate prolonged or even permanent.

Weigh all the facts and information up and use that to help you prioritise what is most important to you.

In no special order things like...

Getting the cancer out

Highest chance of it not returning

Being fully continent

Retaining full erectile function

If surgery, should it be robotic, laparascopic or open.

If surgery can the nerves on both sides of the prostate be spared to give the best chance of 3 & 4

Short duration high intensity RT or longer duration lower intensity external or internal (Brachy)

Impact of travelling to and from hospital for appointments

Best recovery time ..The list is quite long!

In all of this remember Living is usually number one priority so a decision needs to be made reasonably quickly as options start to reduce when the disease progresses. However it is equally important that you ask any questions you have and get answers as soon as you can.

Finally, once you have made your decision stick with it and see it through. Mentally condition yourself to accept that your decision was made with all the facts and info before you. No looking back.

I wish you all the very best

Xx

Mo

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User
Posted 14 Dec 2015 at 07:15
Hi

My oh had very similar numbers to you. He opted for surgery. For him it was a no brainier. The main advantage of surgery is that, providing you have caught it early enough, you can be cured, and you have no prostate to worry about the cancer making a return.

Have you seen the surgeon and the oncologist? Ask them what they would do if they were you.

On pathology, oh had a Gleason 9 tumour. The surgeon said he absolutely made the right decision because of the high grade.

i cant offer any insight into the other options, but I'm sure someone else will be able to

Best wishes

Louise

User
Posted 14 Dec 2015 at 07:28
Dear Co2thai

Welcome to the forum, have you looked at the toolkit offered on this site ( available to download or to be sent via the post) which gives information upon all of the options available?

I think that all of us who have had to make this decision about treatment will remember what a difficult time that it is, weighing up the pros and cons, coupled with the shock of diagnosis, it is not easy to know what to do.

Not wanting to complicate matters - there are also trials that you may be offered too, additional to your treatment, depending upon which option that you choose.

Once you have read through the information on this site, it sounds like you could do to chat through the options with a professional and I understand that the specialist nurses on this site are excellent, or there may be a specialist nurse at your hospital that you can see.

I would gather as much information as possible from relevant sites.

My OH was G 7 T 3 b with some nodes affected so his RP was stopped mid operation and we had to go for RT with HT. I was told that the chance of cure was the same for both options, obviously there are different side effects, which you will read about.

There is no right or wrong option, just the one that you feel most comfortable with and once you have made a decision, you may find things a little easier as the doctors get to work against this thing.

beat wishes to you.

Alison

Edited by member 14 Dec 2015 at 07:29  | Reason: Not specified

User
Posted 14 Dec 2015 at 08:02

Good morning
I remember asking everyone on the forum the same question , on top of me researching all the treatments and toolkit. It's a very difficult choice and as others say only your choice in the end which you have to live with. I couldn't make my mind up between HT/RT/Bracchy , or the surgery. Truth being I didn't want treatment. I ended up being forced down the surgery route which I now regret
1 Because the cancer had already spread so I need RT / HT anyway
2 I'm completely impotent which I desperately didn't want
I was lucky to be continent almost immediately which was a bonus.
Lots of people are much more educated on here than me and will give good advice. As much as the thought of being irradiated makes me feel sick , I do wonder if it would have been a better route , especially mentally. And the long term effects can take over a year to emerge which gives another year of normality.
I just wish you all the best and am sorry you have had to find us. Good luck
Chris

User
Posted 14 Dec 2015 at 10:04
Hi

This is one of the most commonly asked questions, so much so I have asked PCUK to look at producing a specific guidance sheet for it.

There really isn't anyone who can advise you which route to take that has to be your decision. What others can do is give you a detailed explanation of what each option entails, some medical statistics on which ones have higher success rates and the potential side effects of each. These side effects can be temporary and short lived for some and for the less fortunate prolonged or even permanent.

Weigh all the facts and information up and use that to help you prioritise what is most important to you.

In no special order things like...

Getting the cancer out

Highest chance of it not returning

Being fully continent

Retaining full erectile function

If surgery, should it be robotic, laparascopic or open.

If surgery can the nerves on both sides of the prostate be spared to give the best chance of 3 & 4

Short duration high intensity RT or longer duration lower intensity external or internal (Brachy)

Impact of travelling to and from hospital for appointments

Best recovery time ..The list is quite long!

In all of this remember Living is usually number one priority so a decision needs to be made reasonably quickly as options start to reduce when the disease progresses. However it is equally important that you ask any questions you have and get answers as soon as you can.

Finally, once you have made your decision stick with it and see it through. Mentally condition yourself to accept that your decision was made with all the facts and info before you. No looking back.

I wish you all the very best

Xx

Mo

User
Posted 14 Dec 2015 at 10:28

Hi all

Many thanks for your reply's

I had meeting with both the Oncologist and the Surgeon together last week, they each went through the procedures for the options also outlining side effects and risks but gave no indication of preference.  for the RP they intended to remove all the nerves on both sides and a sample of the lymph glands.

Colin

User
Posted 14 Dec 2015 at 11:13

HI Chris

Many thanks for your reply.  I'm just wondering why you felt you had to go down the road of surgery, I too feel I am in the camp of not wanting to do anything but know I have to do something also with a little pressure from the hospital to make the decision.  I do realise that time is not on my side and that a decision has to be made therefore I do value other peoples opinions and experiences.

Colin

User
Posted 14 Dec 2015 at 20:49

Hi Colin I've only just picked this post up again as there is a lot of activity on the site at the mo. My diagnosis was long and drawn out unfortunately , and to be fair I was dithering a bit and burying my head in the sand. Strangely it was only late on that the RT route was offered to me , but then a large rise again in PSA ( up to 43 ) made them insist I have surgery. It was all such a whirlwind combined with an inane ( I think ) resistance to any help.
I do know if you have the surgery and full removal of nerves then you are likely to be long term impotent. And a risk of incontinence long term although I was very lucky. I believe RT is a lot kinder and that ED etc takes a long while to establish itself. Incontinence is often temporary during treatment.
It depends on your own personal preferences. Of course we all want to get rid of the cancer but some people are far less concerned about side-effects than others. I don't think I would have minded so much for example if I was in my 60's rather than in my 40's.
I just hope you can make your mind up and as other people have said you then have to stick with it.
Best wishes
Chris

User
Posted 14 Dec 2015 at 21:11

Hi Colin I went for Surgery as I would have the option for RT later if you have RT they very rarely remove your prostrate later, which I have had because of some cancer was found at base on pre op report , hope all goes well for you Andy

User
Posted 14 Dec 2015 at 22:08

co2thai, reasearch data suggests that surgery and RT have identical success rates in terms of the following criteria:
- % of men who need adjuvant or salvage treatment
- % of men with undetectable PSA at 5 years
- % of men still in remission at the 10 year mark

The main differences are:
- with surgery, side effects are immediate but will hopefully improve over time
- with RT, side effects like ED and radiation proctitis tend to develop years later

Brachy is too new to compare properly with the other two but initial findings suggest that it is a great option for men with small gland, low PSA, low Gleason and no pre-existing urinary problems. It is true that there is some concern about secondary bowel cancer with brachy but the increased risk is believed to be less than 5% and 10 - 15 years after the original treatment.

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

 
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