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Opting out of treatment?

User
Posted 22 Feb 2019 at 08:45

An odd question to many, I am sure, but has anyone when looking the immediate side effects of treatment (radiotherapy or surgery) made the decision and said they will live, and die, with the consequences of not having treatment?

Indeed has anyone made this decision.

I am off for a conversation with an oncologist next week and I see non-treatment as a viable option. The thoughts of an earlier, but signposted, death do not worry me.

Depressed is my middle name and depression my continual state

User
Posted 25 Feb 2019 at 17:19
Out! Out! Out!

Roll on March 30th!

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”........😉

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 17:20
Peggles makes a good point. Post op pathology often upgrades 6s to 7s. Better out than in unlike Brexit 😂
User
Posted 18 Mar 2019 at 10:04
You don’t seem willing to listen to what those of us who have actually gone through this treatment are telling you: that treatment for prostate cancer isn’t nearly as bad as you’re making out. I really have to wonder what the point of posting to a support forum is, that being the case? I’ve gone through hormone therapy and radiotherapy - I can tell you exactly what it’s like, if you’ll actually listen. Likewise people who’ve had surgery can tell you what that’s like.

Do you want practical advice or not?

Chris

User
Posted 24 Feb 2019 at 11:44

I think the reasons for lack of data include:-
- urologists are required to publish their lifestyle outcomes for RP but uro-oncologists don't have an equivalent recording system for RT/HT
- not all urologists comply anyway
- our uro tells us that many men lie on their questionnaire and say they have fewer side effects than they have (theory being this is down to embarrassment about incontinence / ED)
- urologists who give the questionnaire to wives / partners get a worse set of outcomes data :-(

Try this report - https://uroweb.org/wp-content/uploads/Lardas-M-et-al.-Eur-Urol-2017-726869.-Quality-of-life-outcomes-after-primary-treatment-for-clinicially-localised-prostate-cancer.pdf

 

Edited by member 24 Feb 2019 at 13:11  | Reason: to activate the hyperlink

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

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 17:26
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 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

User
Posted 18 Mar 2019 at 18:32

Originally Posted by: Online Community Member

...at the moment even a small chance of deleterious (quality of life affecting) side effects are tipping me towards the no-treatment option.

That's really not a terribly rational attitude, is it? Consider the facts - and these are facts, not "anecdotes":

1. You have a condition that has an extremely high probability of being cured.

2. The treatment has a very small probability of significantly impacting your quality of life, but a vast higher probability of not doing so.

3. Not being treated will result in a high probability of an extremely unpleasant and lingering death.

4. If you are treated and find yourself one of the small minority whose quality of life is unacceptable you can then end your life in a manner of your choosing, should you wish to do so.

Given these FACTS, which course of action does logic tell you it's sensible to pursue? Treatment or no treatment?

The answer seems quite clear to me!

 

User
Posted 18 Mar 2019 at 19:44
As a nuclear safety analyst, I assume NAJB is perfectly capable of grasping the difference between data and anecdote. As a depressive, perhaps not so much?

NAJB, three points:

- with a tumour that is close to the edge, the delay to lose weight for surgery may be a risk too far - you wouldn't know for sure until after the gland is in a lab and has been disected thoroughly

- you are assuming that you would have to have hormones - in fact, not all oncos insist on HT with RT and even if yours does usually, s/he may be amenable to discussing that option with you

- there is plenty of qualitative and quantative data about the likelihood of various side effects following radical treatment but it won't tell you whether you will be in the lucky or unlucky group

Cheshire Chris, I agree with CJ - facts 1 & 2 are not facts and I am not sure that fact 4 is supportable either - some people would not have the option of ending their own life due to religious belief or life insurance Ts & Cs. There is no cure for cancer, only long term or short term remission. And every treatment has some life-impacting effect, whether that be dry ejaculation, depression, anxiety, shrunken penis, etc. Most men have enough love and concern for the people around them to do whatever it takes to stay around for longer but that doesn't mean everyone feels the same way.

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

User
Posted 18 Mar 2019 at 19:48

You are right in saying you should not be very influenced by a small number of people whose experiences may not be truly representative for success and side effects but even retrospective studies of treatment show a wide range and you don't know where you would slot in an elipse for treatment quite apart from widely differing side effects. There are just so many variables and different responses by men to be specific. If you have researched this you should understand. Take a look at the elipse for each of 3 stages of treatment. You could be anywhere in the range for how successful treatment is. https://prostatecancerfree.org/compare-prostate-cancer-treatments/

 

No matter how many professionals you see, you cannot get sure answers and it comes down to your personal decision as to whether you decide to have treatment or take your chances without it.

Edited by member 18 Mar 2019 at 19:50  | Reason: to highlight links

Barry
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User
Posted 22 Feb 2019 at 09:07

I weighed up the options before I started treatment, but the downside didn't seem that bad (and wasn't). But I will make the same assessment again if/when it comes to chemotherapy. It's about balancing the consequences of being treated versus not being treated.

I have long been a supporter of Dignity in Dying, and I'd like some measure of control over how I go.

Depression is a very different matter, and if that's the issue, you should seek help, rather than be looking at "suicide by cancer". Depression is a treatable disease that can affect your judgement in these matters.

Get help.

 

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 22 Feb 2019 at 09:55
Hi Nick,

If you are thinking of ‘doing nothing’, it is certainly an option. Your Gleason score is classed as intermediate on the scale of aggressiveness, and there will be thousands men walking round with exactly the same as you, blissfully unaware they have cancer.

The point is as this stage, it’s probably ‘curable’ - whatever that means, as it often recurs years later, by which time you might have died of something else. If you do nothing, you might live five, ten, fifteen years or more anyway.

I don’t think you ‘need help’ in a psychiatric sense, as to keep calm and carry on is a logical option. Take advice from your specialists, and maybe have another PSA test in three months to see if the PSA number is increasing dramatically.

I had the same score as you, had a prostatectomy, and am now cancer-free. No regrets. But then I am an optimist, not a depressive😉

Best of luck whichever path you choose.

Cheers, John.

User
Posted 22 Feb 2019 at 10:02
I have to fight the negative mindset all the time and I have learnt to ask is it me or my pesky negative sidekick trying to run things.

I’ve learnt never to make commitments whilst in that frame of mind.

I would also note that at G7, you are on balance of probability nowhere near end of life considerations.

Chris J and Lynn have experience in this area. Hopefully they can reply.

Whatever you decide, make sure it is your decision and made with a clear head and with your best interests at heart. Don’t be steamrollered by other people one way or the other.

I would say on treatment side, most people can live with the outcomes. Bad side effects are not in the majority.

User
Posted 22 Feb 2019 at 10:02
My father-in-law refused surgery, radiotherapy or HT because he was concerned about ED. He did agree to chemo though.

He had a T2 G7 at diagnosis but only survived for 4 years.

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

User
Posted 22 Feb 2019 at 10:17
Lynn

A sad turn of events but I think you said he had an aggressive variant, something to bear in mind when selecting no action.

User
Posted 22 Feb 2019 at 10:19

Hi NAJB,

            from my prospective, I had 6 cycles of Chemo, 37 sessions of radiotherapy and 30 months of HT I was T3-4,

Gleason 8...3+5......the side effects for me really were not that bad....I am 7 months after my treatment ended and looking back, I am glad I went down the path that at least gave me a chance at a "Cure ".....wish you well whatever path you choose....Shaun

User
Posted 22 Feb 2019 at 10:52
Thanks for all of your replies. Whether right or wrong I see and will evaluate 'no treatment' as the acceptance of a different set of possible side effects, which might be more controllable than the side effects of the 2 treatment options. I could not live, even for a few months let alone longer, with incontinence. I want to rage against the dying of the light not to go out with a whimper (that is a hopeless mishmash of quotes, but literature is not my strong point)

Depressed is my middle name and depression my continual state

User
Posted 22 Feb 2019 at 11:48

Hi NAJB, i asked my specialists what would happen if I decided to do nothing.

I was told because my cancer had probably been there for many years and was on the edge of he capsule I would die a horrible painful death in the next few years. I was also advised doing nothing was not really a sensible option.

As it turned out it had escaped the capsule but the discussion was enough to make me choose to have treatment.

I still worry that because the cancer came back I will not make old bones.

But in between these thoughts i am enjoying life, walking,reading, playing sport, going on holiday etc.

Best wishes.

 

Ido4

User
Posted 22 Feb 2019 at 13:44

Originally Posted by: Online Community Member
Lynn

A sad turn of events but I think you said he had an aggressive variant, something to bear in mind when selecting no action.

 

That is our theory although he was diagnosed with a nice ordinary adenocarcinoma. The problem in his case was that the PSA fell dramatically & inexplicably, creating a false sense of security; no-one seemed to pick up that sometimes when PCa becomes more aggressive / advanced, it stops producing PSA so the fall should have been a trigger for further investigations. 

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

User
Posted 22 Feb 2019 at 13:46
A sad turn of events but people are aware of that risk through your story now so it may help someone in similar circumstances
User
Posted 22 Feb 2019 at 13:50

Originally Posted by: Online Community Member
Thanks for all of your replies. Whether right or wrong I see and will evaluate 'no treatment' as the acceptance of a different set of possible side effects, which might be more controllable than the side effects of the 2 treatment options. I could not live, even for a few months let alone longer, with incontinence. I want to rage against the dying of the light not to go out with a whimper (that is a hopeless mishmash of quotes, but literature is not my strong point)

 

I totally, totally get that. Important to understand though that advanced / terminal PCa is just as likely to cause urinary incontinence, require catheterisation, bowel incontinence, certainly will end your sex life, etc, etc.

When making decisions about avoiding the side effects of treatment, don't imagine that the alternative is that your life just carries on as it is and then you suddenly die without any unpleasantness. It is, for most men, very very messy. 

 

Fortunately, you can decide on no treatment now and probably be around for quite a few years yet but still revert to hormones later if you wish.  

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

User
Posted 22 Feb 2019 at 15:24
You also need to factor in that the treatment may be enough to “cure” you or kick it so far down the road that you do the “with” not “of” departure from this vale of tears.
User
Posted 22 Feb 2019 at 16:25
You're a relatively young man still. I completely understand your concerns about the side-effects of treatment, but choosing not to be treated seems unwise to me. It would be different if you were 85 rather than 65, but at your age, 4+3 T3 cancer is highly likely to result in your death if untreated and, as Lyn rightly points out, it is not an easy or a pleasant way to die.

Yes, treatment has side-effects, but weigh those up against what's likely to happen to you if you decline treatment. And if you're depressed, for goodness sake do something about it! Depression is a very treatable illness.

All the best,

Chris

User
Posted 22 Feb 2019 at 17:38
NAJB - I was T2c gleeson 3+4 age 54. It was near the edge so was told nerve sparing right side only. They suspected extracapsular extension which turned out to be true, therfore T3a. I was dreading incontinence and ED. I asked the no treatment at all question and was told I could probably expect four years and after that who knows it could be many years but probably not and likely an unpleasant end with the onset of the same ailments as the side effects of treatment with many more and far worse. The specialist nurse explained that the incontinence is not a sudden flood as some think, but a gradual leak, or occasionall dribble which is manageable. Also in most cases it is only temporary and only a few are not so lucky. Turned out to be dry at night immediately after catherter removal and slight leaks for six weeks then perfect. ED is still improving after two years.

So, right up to being put under I was doubting my dicission.

Anyway two years have past. I am lighter, fitter and healthier than for many years before. I need to pee more urgently and frequently have low flow and as I said ED is improving with meds and I still have hope of recovery. PSA still undetectable.

Two years has past so quickly, and if I had gone the other way maybe just another two left and with what quality?

I am now glad I had the RARP and am enjoying life.

Good varied advice above from others. Think very carefully about your decision its your life and only you can decide.

All the very best of luck whichever way you go

Cheers

Bill

User
Posted 22 Feb 2019 at 19:00

Great question, I don't recall seeing it before.  Looking at your profile you're likely to be used to handling probability and you've thought this through.   If you don't mind me adding some points I've read:  

The chance of you being seriously incontinent is low, and you can have a surgically installed cut off.

There is a decent chance of you reaching 80 or more, from 65, with treatment.  If nothing else gets you.

The chance of dying of something else increases with treatment as you'll live longer.

At this moment 1000's would swap places with you as they have been offered less or no curative treatment, assuming you're offered the full range.

Hope you don't think I'm saying the obvious as you've obviously given this thought.

All the best at your appointment, let us know your decision.  Peter

User
Posted 24 Feb 2019 at 11:34

It is the lack of hard data that is frustrating me at the moment. I understand the consequences, but cannot assess the risks (consequence x probability) for lack of data. I had hoped the toolkit, which arrived very quickly, might have closed some of the gaps, but did not offer any concrete data. The data might of course be very dependent on where, when, who and how the treatment proceeds.  

I am happy to apply my own weighting to the outcomes, for instance I would place serious incontinence  as a less desirable outcome than dying, the former would be an absolute frustration knowing that it is a limiting feature over which I once had control and I would regret my decision. But dead is nice and final with absolutely no regrets.

It might be an interesting conversation on Wednesday .

Thanks again for all of the replies.

Depressed is my middle name and depression my continual state

User
Posted 24 Feb 2019 at 11:44

I think the reasons for lack of data include:-
- urologists are required to publish their lifestyle outcomes for RP but uro-oncologists don't have an equivalent recording system for RT/HT
- not all urologists comply anyway
- our uro tells us that many men lie on their questionnaire and say they have fewer side effects than they have (theory being this is down to embarrassment about incontinence / ED)
- urologists who give the questionnaire to wives / partners get a worse set of outcomes data :-(

Try this report - https://uroweb.org/wp-content/uploads/Lardas-M-et-al.-Eur-Urol-2017-726869.-Quality-of-life-outcomes-after-primary-treatment-for-clinicially-localised-prostate-cancer.pdf

 

Edited: by member 24 Feb 2019 at 13:11  | Reason: to activate the hyperlink

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

User
Posted 24 Feb 2019 at 12:12
Two things

One: I’ve noticed that people sometimes massively overthink things especially in terms of risks

Two: serious side effects are far rarer that mild or middling ones

Ok three things

Three: consider reframing it. It is not death versus serious side effects. It is death versus the RISK of side effects with the likelihood being mild or middling if any and these often improve over time.

Ok four things

Four: Life is a risk. Buses, pit bulls, muggers, meteors or whatever. Doesn’t stop you going out the front door every morning. Risk didn’t stop Montgolfier, Bleriot, Hilary, Armstrong and all the others, did it? Puts into perspective for me, that last thought.

User
Posted 24 Feb 2019 at 12:48

Originally Posted by: Online Community Member

I am happy to apply my own weighting to the outcomes, for instance I would place serious incontinence  as a less desirable outcome than dying, the former would be an absolute frustration knowing that it is a limiting feature over which I once had control and I would regret my decision.

As a fellow scientist, I can't help thinking that your logic is flawed.

If you are treated and you end up with the low probability outcome of serious incontinence, you have the freedom at that point to choose to painlessly end your life, should you genuinely feel that life is no longer worth living.

If you are not treated, you have a high probability of dying in a manner which is not at all quick or painless.

The logical choice of action seems clear!

All the best,

Chris

 

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”........😉

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 😂
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 😂😂😂😂
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 “routine” 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

User
Posted 18 Mar 2019 at 09:22

An RT nurse had a long conversation with me on Friday (I am definitely wasting too much of their valuable time) and persuaded me to have another chat with the oncologist. I had been somewhat dismissive of him at the previous session (with my heart set on surgery if at all).

My concerns centre around, particularly, the possible effects on bone density; I don't like the ideas of weight gain nor effeminising. I already have one artificial knee and the second knee is showing all the signs I recognise from before. In about 2 years from now I will be unable to walk more than a mile or so, without extreme pain, nor will I be able to sit still for long periods. My opportunities for exercise will rapidly close down (unlike my weight) and I will get to the stage where my relative quality of life will be very small.

I guestimate that I have this year and next year to enjoy doing what I currently enjoy and we have already had to cancel a planned trip to Georgia (non-US version) next month, just in case I was accepted for surgery.

My back-of-the-envelope assessment of 'good' years left for me suggests that the advantages of intervention now offer only a small return, but in later years only.

The oncologist will have to work very hard to persuade me to agree to bunging myself full of gender-bending, bone density diminishing hormones.

 

Depressed is my middle name and depression my continual state

User
Posted 18 Mar 2019 at 10:04
You don’t seem willing to listen to what those of us who have actually gone through this treatment are telling you: that treatment for prostate cancer isn’t nearly as bad as you’re making out. I really have to wonder what the point of posting to a support forum is, that being the case? I’ve gone through hormone therapy and radiotherapy - I can tell you exactly what it’s like, if you’ll actually listen. Likewise people who’ve had surgery can tell you what that’s like.

Do you want practical advice or not?

Chris

User
Posted 18 Mar 2019 at 15:51
We always welcome depressives and hypochondriacs here, you know who I mean H.H.!

You are quite in order to question your treatment plan, but too much time spent consulting Dr. Google is not necessarily a good thing.

My friend has been on hormone therapy for five years, with no side-effects whatsoever.

Forget what you have read about bone density reduction, and focus instead on cancerous tumour elimination!

Best of luck.

Cheers, John.

User
Posted 18 Mar 2019 at 17:36

Anecdotal evidence is no substitute for hard statistical data; I am frankly amazed that there is no such database. My own database includes one survivor, 2 dead and another uncertain. That could give me a pretty biased view. I am trying to take a slightly positive view, but at the moment even a small chance of deleterious (quality of life affecting) side effects are tipping me towards the no-treatment option.

Decisions can only be made using facts/data, not hearsay evidence.

Depressed is my middle name and depression my continual state

User
Posted 18 Mar 2019 at 18:15

We are talking about Cancer here. You should know the treatment (if you choose to take it and no-one is going to force or beg you to take it) is not an exact science. Everyone's cancer is different and how they react to the treatment also. Some sail through it others not so.

I don't know what you are expecting? No one can tell you you will have no side effects or will be cured. Most of us weigh up the pros and cons after considerable thought /research then get on with it.. Life is a Lottery . Maybe in Decades people will look back and say "I can't believe they treated Cancer like that"  but we are living in 2019 and the Doctors and Scientists haven't got  it beat yet otherwise 11000 men wouldn't die of it each year. Most men don't want to be one of the 11000 or at least they want to delay it as long as possible. That's why they get themselves treated.

If you don't want treated that's your business. What does your family think?

Many of the nomograms are based on facts/ data not on hearsay .

Good Luck with whatever you decide.

Ann

 

User
Posted 18 Mar 2019 at 18:24
Hi NAJB , I totally get you I really do , but you need to remember most people on here want survival and don’t give a monkeys about side - effects. My Onco laughs at me as most men enter his office saying save me save me. I enter his office saying leave me leave me. Once diagnosed I fought surgery all the way. I put it off. I walked out of the pre op assessment. I had a crisis team round my house a week before , after the op I was so mentally traumatised I spent 15 nights in hospital. The surgery was too late. Spread to lymph’s and rocketing psa. Refused RT on 6 occasions mainly because 50 % of men who have it recur anyway , and I was told with my psa it wouldn’t cure. I have full continence and EF so I’m not letting anyone fry my bits. We are all different , but I’d rather be dead with zero libido and erection than living with it I think. I’m now facing chemo and HT in the summer due to suspect abdominal spread , but to be honest I may push it off till the winter. This disease wrecked my life at 48 and it’s still wrecked at 52. I don’t call that living , yet have had some fun on the way and travelled and kept working and chilled out a bit more. It has to be your choice. There are lovely people on here with great advice but at the end of the day you have to decide. Good luck whatever you choose !

If life gives you lemons , then make lemonade

User
Posted 18 Mar 2019 at 18:32

Originally Posted by: Online Community Member

...at the moment even a small chance of deleterious (quality of life affecting) side effects are tipping me towards the no-treatment option.

That's really not a terribly rational attitude, is it? Consider the facts - and these are facts, not "anecdotes":

1. You have a condition that has an extremely high probability of being cured.

2. The treatment has a very small probability of significantly impacting your quality of life, but a vast higher probability of not doing so.

3. Not being treated will result in a high probability of an extremely unpleasant and lingering death.

4. If you are treated and find yourself one of the small minority whose quality of life is unacceptable you can then end your life in a manner of your choosing, should you wish to do so.

Given these FACTS, which course of action does logic tell you it's sensible to pursue? Treatment or no treatment?

The answer seems quite clear to me!

 

User
Posted 18 Mar 2019 at 18:46
Cheshire Chris “facts” 1 and 2 are completely not facts ok , unless your Onco is God. Don’t let this debate get personal ok. I’ve been there before. It’s not worth it and we are all individuals with different mindsets yeh ! Good luck with the rest of your RT

If life gives you lemons , then make lemonade

User
Posted 18 Mar 2019 at 19:11

With the greatest respect, Chris, I believe that the facts I stated are correct. Localised PCa does have a high probability of successful curative treatment, and most men don't have a significant reduction in long-term quality of life as a result of treatment.

May I ask what specifically it is that you're disagreeing with?

Very best wishes,

Chris

Edited by member 18 Mar 2019 at 19:24  | Reason: Not specified

User
Posted 18 Mar 2019 at 19:44
As a nuclear safety analyst, I assume NAJB is perfectly capable of grasping the difference between data and anecdote. As a depressive, perhaps not so much?

NAJB, three points:

- with a tumour that is close to the edge, the delay to lose weight for surgery may be a risk too far - you wouldn't know for sure until after the gland is in a lab and has been disected thoroughly

- you are assuming that you would have to have hormones - in fact, not all oncos insist on HT with RT and even if yours does usually, s/he may be amenable to discussing that option with you

- there is plenty of qualitative and quantative data about the likelihood of various side effects following radical treatment but it won't tell you whether you will be in the lucky or unlucky group

Cheshire Chris, I agree with CJ - facts 1 & 2 are not facts and I am not sure that fact 4 is supportable either - some people would not have the option of ending their own life due to religious belief or life insurance Ts & Cs. There is no cure for cancer, only long term or short term remission. And every treatment has some life-impacting effect, whether that be dry ejaculation, depression, anxiety, shrunken penis, etc. Most men have enough love and concern for the people around them to do whatever it takes to stay around for longer but that doesn't mean everyone feels the same way.

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

 
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