Opting out of treatment?

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.

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

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

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.

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

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.

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.

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

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

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.

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

Best wishes,

Chris

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.

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.

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

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