Quality or quantity of life??

[1805]

Just that really. What would you go for?
5 -10 extra years but career change, incontinence and massive surgery amongst effects of quantity, or 5-10 yrs to live but no surgery or incontinence.
Age now 44.

I agree with karoleann.

I really don't know how the drs can be so certain about the prognosis. it's rare for them to be so blunt when there is a chance of years of life.

I watched a very good TV documentary last year - it followed 3 men ( aged 50s and 60s all professionals with high powered jobs) with prostate cancer. They all had secondaries and some were quite poorly but what was interesting was that they all recovered or went into remission, way beyond what was expected.

The usual treatment is surgery and hormone treatment. Chemo if it has spread. Surgery differs depending on the degree of it. One man in the programme expected to be impotent after surgery but wasn't.

Unless your DH's cancer has spread to parts of the body that are very difficult to treat with chemo then he must surely have a good chance of survival?

I'd be hoping for that- drs are notoriously wrong with predictions around cancer in many instances.

I'm not sure there is a chance of years of life whatever treatment we go for. His prostrate is pretty full of cancer cells and they are fairly sure it's spread, but they can't find out where to at the moment. Awaiting date for another scan.
Apparently he's had this for a long time.
Recommended ds has tests from age 30.

I'd go for quality myself, but it is a personal decision.

Will one option prevent a bucket list? I'm thinking if you want to travel then insurance might be an option.

Could he have surgery in a year's time, or does it have to be now?

Do you have children and how old are they? How do you both want the children to remember their dad?

Are the children old enough for some input?

Until he has found is it has spread then surely there is hope?
I've just had a look at the stats on Cancer Research UK and these show that 84% of men are alive after 10 years.
I don't know how his dr can give a prognosis in the absence of an MRI scan because it's usually the secondaries that are hard to treat. If the cancer has not spread then surgery and drugs are often successful.

If he doesn't have surgery then it is likely to spread. If he has surgery then he has some hope especially if it hasn't spread.

Have either of you talked to any support groups?

Might it help him to talk to other men who have had surgery and discuss their quality of life now?

The doctors are sure it has spread but MRI didn't show up where to. Stats don't apply to dh as he is not in the stats age range.
Our case is very unusual, and am happy with treatment being offered.
Our decision is which treatment type of plan we go for.
Dh is thinking remove the core of the problem and hope for the best after surgery.

I'm sure you have read all about it anyway but thought I'd add the link anyway incase it helps.

www.cancerresearchuk.org/cancer-help/type/prostate-cancer/treatment/statistics-and-outlook-for-prostate-cancer#stage

I'm sure your dr is good but on the other hand until they have proof it has spread - and the MRI hasn't picked it up yet- he might be one of the lucky ones so they should prepare you for the fact it's spread but without proof then no one knows.

I think this is something he needs to talk through with his oncologists. They will understand the quality v quantity and be able to advise.
But what one person is happy to put up with differs from someone else, so it depends what your DH is happy with.
Some people will choose a longer life at any cost- others won't. He and you need counselling perhaps from cancer specialists to help decide.

I was wondering if there is a chance you can take a month out (get a mortgage holiday perhaps) as a family and do some bucket list before the surgery? Then if he is bed ridden for a few months he can have some fond memories already to make him smile? I know kids are at school so possibly not an option, but I wonder if there is a way around that? I'd want to do something while he is able, just in case, as a family. Then I'd go for the op.

I'd really recommend getting some other opinions. I'm not a clinician, but I spend a huge amount of my professional life with oncologists and urologists talking about prostate cancer, and surgery would not be the preferred course of treatment for someone with high risk prostate cancer - has he been seen by a multi disciplinary team with a radiotherapy oncologist?

Lion - yes, that's pretty much where we are in our heads.
Doing weekends away when we can, with surgery booked for 2nd July.
Have a couple of policies we're cashing in, and dc schools are being very understanding. Kids are on last few weeks now, so might try to get away - appointments allowing. Dh awaiting a PET scan at the mo.....

CMOTs post seems a good idea- no?
There are always options - worth exploring all of them before you commit to something.

Yes we've seen surgeon and radiologist together and separately.
We are aware dh is not a normal candidate for surgery. I am not doubting our consultants, just musing over different ways of going about this.

Someone asked about dc?? They're 12 and 9. 9 yr old autistic.

What does your DH want to do? Although whatever he decides will impact on the whole family, I believe this is the one time in life when we have to say to someone 'over to you'.

It's never going to be straightforward. Whatever he chooses will be a compromise. I think the danger is when partners and family are saying do one thing but the sufferer ( for want of a better word) wants something different but doesn't want to let them down.

It really doesn't matter at all what a bunch of internet strangers want.

Are you saying that you want one route but he wants another? Was that the reason for your question?

The reason for my question is to vent my thoughts to complete strangers!!! And to hear as many opinions as possible.
I didn't want an analysis of his condition as it's way too complex to discuss here.
Thank you for all your thoughts and kind words everyone.

Best of luck whatever he decides.
I don't think anyone can really advise you- and none of us know, God forbid, what we'd do under those circumstances. It's easy to theorise but it's only something anyone can really get a handle on if they are in that situation.

Sending you all good wishes.

Hopefully the PET scan will give a clearer picture of the extent of the cancer .

I'm so sorry that you are in this position . You must be reeling with shock - even if you feel calm and detached - and I can't imagine having to make the choice before you .

Good luck . The NHS are fantastic when it comes to dealing with complex ,serious situations like this .

OP completely understand your wish for opinions not too many questions. A mn friend I've made here recently had a rare and complex cancer removed. She got a lot of support here both pre op and post op. She would tell you herself that the preop bit was a million times worse than post op. She also met someone who by a million to one chance had had the same thing which was amazingly helpful to her.

Best wishes to you and your DH and dc. Do keep posting for support if it helps.

Surgery can of course be very debilitating, and have a long recovery period.

If there is a chance of a urostomy, I wouldn't call that incontinence. People do manage with these, and I would see that as something you had to manage rather than a disabling thing.

Whatever you do decide, I would start considering bucket list and making great memories.

I'm still asking myself the following questions...

How much of the 5-10 years without radical surgery would your dh genuinely have a good quality of life for? Surely it wouldn't actually be a good quality of life the whole time?

Knowing your dh, how depressing do you think he would find his life if he were incontinent and impotent for 10-20 years, and no longer able to carry on the career he used to do (is this a certainty, btw?)? Would he get used to it, be able to work around it and be happy to have the chance to live long enough to see his children grow up and be there for them, and to be with his wife, or could he sink into a depression? Is he as much defined by his career as his family, or by his physicality as his personality? Does he have ideas for other things he could do with the rest of his life if he has the major surgery that would make him feel optimistic and useful, not a burden to everyone?

It seems to me, your dh is only really going to want a longer life if he can feel it is still a purposeful and much appreciated one, not one where he ends up feeling (however hard others try not to make him feel like that) relegated to the sidelines, watching everyone else grow up and get on with things while he hangs around feeling undignified, emasculated and physically uncomfortable. Being incontinent doesn't mean your life is meaningless, or intolerably undignified, or poor in quality, if you have enough reasons to want to be alive and enough still to enjoy about your life - it's all to do with state of mind, not body.

I think with the DCs being so young any extra time is worthwhile even if he's bedridden.

The difference to the youngest of having a dad until 21 rather than 11 is immense.

Are they having counselling/support now?

I completely agree with weatherall.

If your kids or your DH were older, I would think differently. I can see going for quality over quantity of life if you were in your seventies, but at 44? No.

Personally, I think your DH has the right idea with what you said upthread, OP: remove the core of the problem and hope for the best after surgery. I suppose that means 'normal' treatment option, rather than the super-aggressive option?

Whatever you decide, I'm so sorry that your family is going through this, and wish you all the best.

Kaola
I don't think it's as simple as old= shorter life, young= longer life.

You have to consider the possible impact on a child(ren) that watching a terminally ill parent could have. This could be truly devastating for them, compared with- and I don't mean to sound glib and mean this generally, just not for the OP- a quick and fairly dignified exit.
The strain on a child as they approach their teenage years with all the hormonal ups and downs and GCSEs etc could be far worse than losing a parent at a younger age.

One of my DCs friends lost their mum to cancer when they were 13- but they had already lived with her cancer from aged 4, then 5 years remission, then it returned.

It's not morally right IMO to suggest that someone who is ill, possibly in pain and suffering great indignity through illness, should hang on to life at any cost so they can have more time with their loved ones- or more, as you seem to be saying- their loved ones can have more time with them.

I feel terribly sorry for the OP and her family, but really it's her DH's choice ( with some consideration for his wife's views) that count.

It's not clear from the OP's posts what the prognosis is- whether it is in fact a terminal case, or maybe terminal without surgery, or maybe even remission with full surgery and further treatment.

As rabbit says, I doubt if anyone with such a prognosis would have ' 5 great years' because there would be a slow decline, so it might be a case of 2 good years then 3 pretty awful years.

Op- don't know if you are still reading but you said your DH was having some screening soon, so hope the results give you some hope.

Consultant bluntly told us that this disease will be the demise of dh at some point.
Scan was cancelled this week due to a lack of supplies being delivered.
Dh still would like surgery and hoping there-on-after.

Really sorry to hear that- did he say why given they can't find any secondaries yet? I'd be hoping they were wrong until there was proof.

PSA, and Biopsy results very bad, and Gleason bad too. From these results they are sure it must have spread, but the MRI came back as localised. The docs think this does not match his other results, so have booked a PET scan - which was the one which was cancelled.
There is a vague hope it is localised, but docs are very certain this cannot be the case.