Opting out of treatment?

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 !

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

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

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

User

Posted 19 Mar 2019 at 16:55

I find sometimes the discussions on here can be very very disturbing for someone who have just be diagnosed , everyone is different and approach things their own way ,even when I was getting rt treatment a fellow patient getting rt was talking and he was in nigh on denial that he had pc. I found it very bizarre . My good friend who passed on after asbestosis , a family man ( me I am single ) saying was ‘ what will be will be ‘ what I personally found helpful was the fact that I knew 5 guys who been or going thru treatment so we compared ‘notes ‘ all still with us . Only once a friend who been thru pc said to me I should have chosen different treatment , when speaking about pc I think you got to choose your words carefully . Still this site as helped me considerably , but sometimes I found it rather ‘ heavy ‘ , to the extent that I didn’t revisit for a few days .

User

Posted 19 Mar 2019 at 16:56

User

Posted 20 Mar 2019 at 17:59

A session with the oncologist today, the same one I had treated with some disdain (according to my wife) the first time around.

His view was that without treatment I would be lucky to survive more than 5 years; I should have questioned the basis of his judgement. My wife, very strangely, found that somewhat alarming. I won't say I was pressured into opting for HT/RT, but strongly steered.

I am also being bombarded with other resources/help. A pity that my advancing years have made catching anything, other than colds, impossible.

Depressed is my middle name and depression my continual state

User

Posted 20 Mar 2019 at 21:08

Why would you question his judgement? It will have been based on clinical fact based on your presentation.

If you feel pressured then the sensible course is to take charge, consider the facts and make an informed choice. I won’t comment as to what that choice should be because that is your choice good or bad but making a choice is better having it made for you either by being pressured or letting events control you.

Notification

Join the online community now.