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Original poster

Quality or quantity of life??

49 replies

1805 · 17/06/2014 12:16

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.

OP posts:
Matildathecat · 17/06/2014 12:26

Oh dear. Sounds very difficult. Can you post a bit more info?

wineoclocktimeye · 17/06/2014 13:06

For me, a lot would depend on the other people in my life, a partner, children (and their ages)

Sounds an awful decision to have to make.

Original poster
1805 · 17/06/2014 13:25

Hmm. Yes indeed.
Dc age 12 and 9.
Incurable cancer which will kill him eventually no matter what we decide. These doctors are brutal with the truth.
Dh currently main income earner.

OP posts:
Original poster
1805 · 17/06/2014 13:26

this decision is about dh by the way.

OP posts:
drinkyourmilk · 17/06/2014 13:31

With those parameters live longer, no question.

If my quality if life was severely effective (high degree of paralysis, medication making it difficult to enjoy/partake in life for the majority of remaining years) then I would think harder.

Massive hugs to you and your husband. Awful situation to be in. Flowers

kinkymouse · 17/06/2014 13:40

So sorry for your situation, what a horrible blow.

My line of thinking would be for longevity as the medical advances that can be made in 5-10 years could be significant.

There could be a huge leap forward in treatment in this time, not saying there will be a cure but quality of life may be greatly improved with new drugs or treatments that are over the horizon.

Dontstepinthecowpat · 17/06/2014 13:43

What an awful situation to be in. I imagine we would go for the option to give more time in the hope things change and more can be done. Treatment options change and trials start all the time.

I hope you both have support in making this decision Thanks

hashtagwhatever · 17/06/2014 13:45

Awful situation I'm so sorry.

Personally living longer for my dc would prevail.

Original poster
1805 · 17/06/2014 15:56

Good. That's what we were thinking. Go for the op and have extra time. It may not be as bad as we think - you never know.....
Good to get a quick show of hands on here as our heads are spinning somewhat at the mo.

OP posts:
Original poster
1805 · 17/06/2014 15:57

The no surgery option would mean doing bucket list things and having a great few years.

OP posts:
ab987 · 17/06/2014 16:02

Really sorry but it's impossible for anyone but him to decide. Everyone would make a different choice.

I think in your shoes I'd explore- if you have not done so already- ALL the specialists who can offer you surgery around this ( maybe prostate or bowel issues?) because some risks are higher than others depending on the skill of the surgeon.

Is it 5-10 years whatever, or 5-10 years plus another 5-10 with surgery?

It's hard to advise you because it depends on the disease- if it's something that a better cure or outcome may be developed within 5 years then I'd go for the surgery and hope that something might be on offer in the future to help.

I'd say career is the least of the worries unless that impacts hugely on income. I'd be deciding on what would prolong quality and quantity.

Lilybensmum1 · 17/06/2014 16:07

For me it would too be prolonging life with my DC's no question.
so sorry to hear about what you are going through puts my moans into perspective.
These days hospitals have to give you all the potential side effects even if it's a really small chance of causing problems, so hopefully not as bad as you think.

Don't know what else to say to help.

PestoSurfissimos · 17/06/2014 16:09

What a rotten choice, so sorry for you all Thanks

When DH was in a similar position he opted for treatment in the hope that he would have extra time with us. Amazingly for most of those 3 years he didn't suffer too much and was mostly feeling 'well'.

However, don't automatically assume that given a finite amount of time remaining, that he will wish to partake in those things on the bucket list. DH told me vehemently, on leaving the meeting in which he was told he was now terminally ill, that he would not be wanting to go on holidays any more and that me & the DDs would have plenty of time for those once he was gone Sad

We respected his wishes in spite of desperately needing a break, and we didn't go away again until he was no longer with us.

Wishing you DH and you and your family strength in whatever you decide xxx

kinkymouse · 17/06/2014 16:11

Hi just wanted to give you my opinion from my younger self. My Dad died when I was in my teens, he was diagnosed with cancer and had an op which limited his mobility quite early on.

We had a wonderful few years with him after that, infact it was nice to have him in one spot for once as he worked so hard before that. We all lived much more in the moment as a family more so than I think we ever would have if he wasn't diagnosed.

Of course if I could have him here now then, yes absolutely I would, but we have some very special memories made in those years that made that time very very special.

FreeSpirit89 · 17/06/2014 17:26

Hi, I'm so sorry for your sad news, and big hugs for you and your husband.

We had similar, my grandfather opted to the treatments, he had 3 years with us, of that time 6months we're spend bedridden.

It's a very personal choice but I would opt for quality myself.

LaurieFairyCake · 17/06/2014 17:39

A catheter and/stoma bag is not as bad to get used to as you think - I've had an elderly relative make the same choice and was able to cope well with it even though she's well into her 80's.

Good luck whatever you decide.

GirlInASwirl · 17/06/2014 17:55

Thoughts are will you all at this time. Sometimes these kind of choices are often about the lesser of two evils. I wish you all clarity in your decision making.

I think its a question of how much your Dh wants to fight. Would he feel happier accepting that he has the condition and just seeing how nature takes its course? Or does he want to battle it and take his opportunities? Its difficult to advise really as it is often down to how someone feels about their 'lot' and the real possibility of medical progress. There is also whether he would see the possible incontinence, career change and surgery as a set of inconveniences or something he would prefer to avoid altogether. Career changes and surgery recovery eventually do pass; so maybe the incontinence would be the longest lasting issue.

Is there an extra professional that you can talk to - where you can talk about how you feel, how other patients have responded and try to get more medical info about the choices to be had.

I think the answer is to get the much out of life - whichever choice is made.

Original poster
1805 · 17/06/2014 18:27

Thanks everyone. So good of people to share their thoughts and experiences.
They said : no treatment - dead in 2-5 yrs
Normal Treatment - live for 5-10 yrs
Radical surgery and treatment - add 20% extra onto life.

OP posts:
ab987 · 17/06/2014 19:07

For some people, treatment if painful and resulting in loss of capacity to enjoy life is not something they choose. I have known (older)people refuse treatment - eg someone with pancreatic cancer- because they knew that even with surgery the outcome wasn't good and their life would still be cut short . So they lived for 9 weeks post diagnosis compared to perhaps 1 year with surgery.

But I think it all depends on how bearable the after-effects of treatment are balanced against the shorter lifespan without. There is also the element of 'playing for time' hoping there may be drugs or treatment in the pipeline.

I had a friend who was given ( at the time) new drugs for breast cancer which were being trialled and gave her a couple of years longer- but at the outset it was seen as a possible 'cure' so the risk was thought worth taking.

I think the crux of this is how incapacitated he would feel WITH surgery because having surgery and then feeling too ill to enjoy life however long is left is a double whammy.

I hope you find the answer for you all - and it's a rotten choice.

GirlInASwirl · 17/06/2014 20:37

Agree with ab entirely. Pancreatic cancer is known to be particularly aggressive/decisive so some people do turn treatment down in this instance for reasons cited.

No surgery is risk free (I've had a few myself) and doctors would always recommend the least amount of surgery necessary for tolerable results. Surgery is generally not natural for the body and people need time to come to terms with their 'new' body - both physically and emotionally. For some; they take it very philosophically; others can have a hard time - particularly if they are used to being very active. Generally the more invasive the procedure the longer the recovery period and the larger chance of complications. You may find some doctors a little 'cagey' about what the recovery period really entails (they have usually discharged by this point) so I would always contact someone like Marie Curie/Macmillan for advice.

Have you already touched base with them?

Original poster
1805 · 17/06/2014 21:15

it's prostrate cancer.
we are happy with the surgeon we've met. he has explained recovery and lasting consequences of extensive surgery.

that is the quandary. time vs quality. dh works in a very specialised creative job which would be an additional blow to life after surgery.

so do we have a great 5+ years, or longer time but more miserable?
Or sell up and have an amazing 2+ yrs??

OP posts:
Matildathecat · 17/06/2014 22:04

Please don't sell up. You still need somewhere to live.

Have you explored all your insurances etc since income seems important here? A friend recently got a huge sum from her Critical Health policy and had breast cancer. Also check pension policies etc.

Agree, getting the absolute best surgeon vital. Have heard great things about the robotic prostate surgery.

If it were me and my DH I think I would opt for the surgery but with a very heavy heart. No right answers.

ab987 · 17/06/2014 22:13

Have you had a 2nd or even 3rd opinion?

Your DH is very young to have prostate cancer that is so aggressive and maybe- sorry if this sounds patronising- there may be other drs out there who are able to offer more.

Maybe you don't want to say, but has the cancer spread and it's the secondaries that are now the issue? Is chemo part of the treatment?
There are always new treatments being trialled- has he been offered anything?

How would surgery v no surgery affect his work? Could he work but work from home or other options?

ab987 · 17/06/2014 22:22

I'm going to make a guess that he's a performer of some kind and in entertainment/ music world?

I think it's his choice what he does- he might get a bit more quality time at work, but less overall time with his family.

What are his thoughts on this?

Karoleann · 17/06/2014 22:26

My father was diagnosed with prostate cancer in his early 50's, opted for surgery and as they went in, they discovered it had spread to his epididymus already. They did remove some of the tumour though.
He didn't have any incontinence, although he did need to be near a loo for the first 6 months or so.
He was left impotent - which he was not happy about.

I don't these days anything is certain. If he were my husband, I'd want the extra time with him.

The surgeon initially gave him 4 years and then as treatments progressed he tried the usually radiotherapy, steroid, hormone and chemotherapy. In the end we had 9 years after my dad was diagnosed, he saw two of my children born and a bump and my eldest still remembers him well.