General Chat

My mum has always resented that we were not given a realistic prognosis for my dad when he was dying in the winter of 2003. (Melanoma that was known to have metastasized to lung and bones.) They kept talking to us about managing his pain, stabilizing him, and releasing him and starting chemotherapy.

In fact, we took him home to die 6 weeks after he first went to hospital, the day after they cancelled hip surgery that was meant to help with his pain because his condition was too bad for surgery. It was only then that the orthopaedic surgeon said to my mum, Has anyone ever told you how serious his condition is? and told her, and we took him home next day. Three days later he died, actually (and thankfully) of a coronary artery blockage he didn't know he had. The post mortem showed the cancer was in every organ of his body.

Nobody had ever told us how advanced and hopeless his condition was. I've suggested to my mum that maybe they told my dad, and he was the one who said we were not to be told. That is possible, knowing him. We just don't know.

Anyhow, back to your question, and I do know how you are feeling.

A big question is whether your dad wants to know himself, and then whether he wants the family to know. Since he has family come to appointments with him, it seems he does want them to know.

So somebody really does have to talk to one of the people in charge of his care, be it the oncologist or another member of the team, and say what is needed: straight talk in plain words. Not "prognosis" or "terminal", but "what we think will happen" and "how long you have", if that is the case.

That's just my thoughts, and it all depends on whether your father really does want to know the full straight story, and whether he wants the family to know it too. He really might rather not.

It can be hard for doctors to know what a patient does want. My mum remembers the oncologist standing in the hospital room and seeming like she was waiting for my mum to say something. Maybe if my mum had come out and said: Doc, what's really happening here, what is going to happen? she would have told her straight.

In the end it didn't make a real difference. My mum and dad got to spend those six weeks together, after 10 years of separations and reconciliations, and that was a truly wonderful thing for both of them. Making the most of the time, even if you don't know how much there is, is probably the best thing anybody can do.

THE GP has only just sorted out a macmillon nurse the gp is under review because of negligence and for not getting dad the help and support he needs, as some of you know if youve never had to deal with this it isnt some thing you just know, social services are in volved now thank goodness

Daff as ive said on another thread all my love and luck to you special lady xxxx

thankyou all so much for replies.

firstly i have spoken with the oncologist he only treats 30 or less patients a year with this type of cancer he told me if it spread which it had the prognosis was poor, i also asked my GP she said he would not survive as it had come back to the same place, although my dad wasn't told he had ever had cancer hence him suing, i have looked on the internet to back me up which i should have said in the beginning but as you all no my short term memory problems lead to a lot of confusion on my part, when i asked the oncologist my parents were in the room, ( parents have asked me to attend each one), now i came away thinking they understood what had been said but it seems they didn't take it in and i dont think they understand what prognosis means , im feeling like im keeping something back, and i honestly think 58% is a pretty generous i feel its the next stage which is around 11, hope ive explained it better, and i had this from a government site therefor reputable?? ive never had to deal with this kind of situation before, he goes in tomorrow hopefully will find out more .and is it true that they have to tell him if it is terminal, they have said if they cant cure it they will treat it nearer home but this hasn't registered either with them im so confused, but your all write it needs to come from someone qualified to give that information out xx

DEAR DAFF SORRY TO HEAR ITS BACK
MY COUSIN JUST HAD HIS FITH OPERATION
5 TIMES IN TWENTY YEARS
GOOD LUCK

Each Cancer case is personal and unique.

Ignore the internet and get advice from the Professionals who deal with situations like this on a daily basis.

I too agree with the above posts. You cannot be honest with your mum simply because you do not know; although, you can honestly plead ignorance. Leave it to the professionals.

Well said Daff.

Sue xx

My opinion is that you cannot really rely on internet information because they deal in *averages* and everyone's cancer is individual to them.

I belong to sites where we share our cancer walk experiences, and that is really really helpful to me psychologically... but we deal in experience, not in something we have read, other than in a broad and general sense.

I asked my consultant directly for the odds, and he was able to quote lots of statistics, but with great reluctance, as he quite rightly said that I am unique, and not a statistic... but I personaly wanted to have an idea... not when I was ill, mind, except going in for my last lot of chemo as I knew I hadn't recovered well enough to go for more. I had no choice, but needed to know my risks, then. When I was recovering though, it was a different story... I asked the nurses, and they asked my consultant, who spelt it out and wrote it down, with a little line saying *Remember, you are not a statistic, you are unique*.

So my advice is to keep it to yourself. 2 weeks ago, my consultant was fairly certain I had a viral infection, but did a biopsy just in case... well, he feels dreadful now, as he had built up my hopes, as the biopsy has shown that my cancer is back.

Imagine how you would feel if you had given false hope to your mum?

Be positive, yes. Be supportive and loving. Yes. But you are not medically trained enough to start quoting statistics to your mum.
Really difficult, isn't it? (((((((hugs)))))))

Love

Daff xxxx

I echo what the others have said. take the prognosis and advice from a doctor not whats on the net as its a generalisation.

.Looking at symptoms & diagnostics on the web last year for myself made me get to the point that I wouldn't take various doctors words, that I didn't have some underlying serious illness.

Even after various blood tests came back clear, I was still looking for another condition to explain the reason I was feeling so bad.

One sympathetic doctor (out of the many), & medication to control anxiety & panic that i now know was the problem. A year on I'm back to being me. All symptoms have gone.

I certainly wouldn't make a prognosis via the web. Apart from it not being geared towards an individual, its dangerous to your state of mind & can give false hope or a bad outlook when in this case it may not be correct.

I agree with everyone else - talk to the consultant. Anybody can put anything they like on the internet - it doesn't make it true. As Berona said every case is different.

Sue x

Hi Puss, I agree with the above posts about information on the internet which can be misleading on some subjects.
Every medical case is different.
Unless the Consultant has spoken with you and the family specifically regarding your SDads prognosis, I think it best to take advice from the surgeon or Oncologist who is providing Dads care.

Teresaxx

In a word,

NO, Puss you havnt been told by a specialist consultant or other www can be very misleading depending what countires rates you are reading.

so what you feed your mum may not be an accurate prognosis, it could cause you grief if anything was not all it gave for an outlook,as no one can ever tell in these situations,I'd leave things to the pro's but keep mum positive.~~

you must do what ever you feel is right for you though.

just what I would do in your shoes.

Puss, think how you'd feel if you gave your Mum information that, for one reason or another, turned out to be incorrect, or not the full story.

Much better to ask a professional to tell your Mum. Sometimes we can read information on the web and misconstrue it because we don't fully understand the technical explanations.

I AGREE WITH SUSAN WITH NUMEROLOGY
LET THE SUPPORT TEAM TALK TO HER.

I have found that the medical information on the Internet can vary. Not necessarily wrong, but each individual case is different and what you have found may not strictly apply to your Dad's case.
I'd like to see you discuss what you have found with his doctors first and tell them that you want to tell your mother this - and take their advice on that. I wish you all the best.

A hard one Puss but you promised to be honest.

Think how your Mum would feel if she discovers at a later date that you knew something and didn't tell her.
If you don't tell her something remember you have got to keep that a secret forever.

Hi Puss

Wouldn't you be better off asking the Cancer support team from Macmillan or such like?. They will have experience with dealing with this sort of situation better than any of us. Just an opinion.

Susan
x

please regarding telling my mum something i have found on the intewrnet.

I promised my mum i would be honest if i knew things about Sdads cancer and prognosis, i have read up on the actual cancer he has and its spread so he is at 59% stage 3-4, now to me the odds of him surviving are quite good?, do you think i should tell hjr its at that bstage xx thankyou and sorry its a depressing post but i really dont want to play god but i dont want to lie either xxxxx