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Opting out of treatment?

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User
Posted 24 Feb 2019 at 12:59
Not only that but there are plenty of people out there who cope with serious incontinence without wanting to end it. They change their perspective.
User
Posted 24 Feb 2019 at 13:04
The deciding factor, if you decide to have surgery, would be the skill and experience of the surgeon. My own surgeon said he would not consider recommending a surgeon who does less than 100 prostatectomies a year to any friend or family. He himself does around 300-400 worldwide, and more than 3000 in total.

He has done very well by me although he still owes me 2”........πŸ˜‰

I bought one box of 14 Tena Lights incontinence pads when I was discharged and still have a few left. Erectile dysfunction is a probable difficulty, whether temporary or permanent.

They do say radiotherapy has similar successful outcomes these days.

I do think you should opt for treatment and put it all behind you as so many others here have done.

Cheers, John.

User
Posted 24 Feb 2019 at 13:15
Hhhm, but he is going to see an oncologist so presumably the conversation will be about IGRT, IMRT, brachytherapy, etc. rather than surgery?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2019 at 13:44

Originally Posted by: Online Community Member
Hhhm, but he is going to see an oncologist so presumably the conversation will be about IGRT, IMRT, brachytherapy, etc. rather than surgery?

That’s why I said I understand radiotherapy has similar outcomes.....and treatment in general of whatever kind, would be best for him, rather than doing nothing.

Cheers, John.

Edited by member 24 Feb 2019 at 13:46  | Reason: Not specified

User
Posted 24 Feb 2019 at 16:31

Hi   You must of course be guided by your consultants but if you are a genuine grade 3 ( no one can tell for certain unless it's removed,sliced and diced and looked at under the microscope or did it show some local spread on your MRI )  Lots of men with grade 3 seem to me at least to do better long term with the HT/ Radiotherapy route.

I've seen a fair few instances on this site of men who have opted for a prostatectomy turn out to have grade 3 then have to have HT/radiotherapy  as well.( Can happen with Grades 1& 2 of course but less likely)

It's your choice of course if you decide not to be treated but what about your family. Would they support you in that decision? Do you really want to give in before you know whether you can have a long remission for a good many years?

As you were a safety  expert in the nuclear industry how often is there  an actual disaster?. I can only think of a couple off the top of my head( Chernobyl for one) but you will no doubt know of more and plenty of near misses. Most of the time things run according to plan so why do you think the disaster (serious side effects wise) will happen to you in particular? 

As others have said life is a risk but how will you feel later on if your Pca does become advanced/ incurable/ terminal and you perhaps wish you had taken up the treatment offered.

Best wishes whatever you decide.

Ann

User
Posted 24 Feb 2019 at 17:20
Peggles makes a good point. Post op pathology often upgrades 6s to 7s. Better out than in unlike Brexit πŸ˜‚
User
Posted 24 Feb 2019 at 23:11
For goodness sake Pete don't start a Bexit argument with a contentious throw away remark. The one person who raised this subject previously, if memory serves me correctly, felt obliged to retract it. Since then this forum has thankfully avoided the subject.
Barry
User
Posted 25 Feb 2019 at 16:26
Barry

It was just a joke!

P

User
Posted 25 Feb 2019 at 16:48
Brexit is s joke FULL STOP πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
User
Posted 25 Feb 2019 at 17:19
Out! Out! Out!

Roll on March 30th!

User
Posted 25 Feb 2019 at 17:26
User
Posted 04 Mar 2019 at 18:03

Update from 'my' cancer nurse. I will be offered an appointment at Cambridge with a surgeon, BUT unless I lose 10kg I will not get the go-ahead for surgery. I had already decided that hormone/RT was not going to be an option I would pursue. So an impossible weight reduction target and to compound it all I would still need hormone therapy as (a) my prostate  is enlarged and (b) there is small concern that the cancer is not contained within the prostate. All this is making my decision easier.  

Depressed is my middle name and depression my continual state

User
Posted 04 Mar 2019 at 18:14

Why do you consider a reduction in your weight of 10kg to be impossible? Eat sensibly, go for a brisk walk every day, and it's easy to lose a kg every week, so 10 weeks for 10kg. It's really not that hard. I did it myself last year. The more overweight you are, the more rapidly it'll come off.

If it's of any interest, I was advised to go down the HT/RT route and have found it relatively "painless". I'm currently on my 4th week of RT - about halfway through.

Chris

Edited by member 04 Mar 2019 at 18:18  | Reason: Not specified

User
Posted 05 Mar 2019 at 07:32

Originally Posted by: Online Community Member
Out! Out! Out!

Roll on March 30th!

Is that a recommendation for surgery??

 

User
Posted 08 Mar 2019 at 05:04

If I want any treatment, my options are rapidly closing down. Addenbrookes advised that a re-evaluation of my MRI, combined with the biopsy, has raised concerns that the cancer may have reached the surface, so even were I to opt for removal the likelihood is that RT could still be needed. Given that surgery would not take place for a number of months whilst I attempted to lose weight, the recommendation is to start on hormone therapy now, which would also be needed if/when RT was planned. And, one of the side-effects of HT Is weight gain; at least the Registrar saw the 'amusing' dichotomy of saying 'hey, whale, you need to lose weight, but take some weight-enhancing drugs'. A wonderful lose-lose and a potential joyless few months to look forward to, unless Australia win back the Ashes and the farrago of Brekshit is...... (sorry too political).

I will need to call my cancer care nurse today, but I am getting closer and closer to a DNR-type decision.

     

Depressed is my middle name and depression my continual state

User
Posted 08 Mar 2019 at 07:15

Just a thought but would you/ they consider " open " surgery? The reason they would want you to lose weight is probably because they want to do the Robotic Assisted Prostatectomy and for this there is a bigger anaesthetic risk where you would be in a steep head down position ( risks bigger when overweight as gravity allows the fat to press on your chest area). This position for a long time places the person at a cardiac risk amongst others like stroke etc. 

An open approach would not I believe be so risky when overweight although you could lose at least some of the weight over a few weeks if you put your mind to it.

Best wishes whatever you decide.

Ann

Edited by member 08 Mar 2019 at 07:16  | Reason: Not specified

User
Posted 08 Mar 2019 at 08:07
There's no reason to be concerned about the HT+RT route. It's what I'm on myself and I must say it's been fairly trouble-free this far. Why would you not want to go down this road yourself?

Note that weight gain is certainly not inevitable with HT. As always, it depends on your lifestyle.

Best wishes,

Chris

User
Posted 10 Mar 2019 at 09:58
Just want to echo what Chris said, I am also on Bicalutamide since 23/11/18 and have not had any issue so far with weight gain. I’m actually in a position now where I can lose or gain a pound over a week pretty much at will by varying my diet. I know this isn’t the case for everyone, I was talking to a fellow patient (we are under the same onco it turns out) at the RT centre and he had had to come off Biculatamide because his liver function declined. I started RT just a week and a half ago. So far no real side effects; maybe ready for my bed a bit earlier in the evening than I was before, but that could be imaginary. I’m on 37 fractions, so another six weeks to go. A by product of the RT β€œroutine” is that I am now so thoroughly hydrated that ducks and geese keep try to land on me...

I was previously scheduled for a robot assisted prostatectomy, but a last minute visit - orchestrated by the surgeon - to an oncologist changed my whole outlook on treatment.

User
Posted 10 Mar 2019 at 11:40
Good luck on rt , please keep us updated , I found it bizarrely quite interesting getting the ideal situ, bladder full, no gas, bowel empty . Side effects kick in much later . I am on Tamsulosin now to help with the waterworks after 20 sessions
User
Posted 10 Mar 2019 at 12:05
I'm in the same position as you, Malcolm. I've now had 19 sessions (the machine broke down one day!) and thus far the side-effects have been relatively mild. The only problematic one is the need to urinate 5 or 6 times during the night. I've started using a portable urine bottle to save having to get out of bed! I'm told that should pass within a few weeks of treatment ending.

Chris

 
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