Pro's and cons of knowing long term prognosis

Hello Nat

Difficult question which we probably all will have a different opinion on.  I did want to know but my circumstances were different.  I didn't even have to ask the question as they told me before I asked that my prognosis was good.  

There were a few times during my treatment when I didn't ask questions because I was worried about what the response might be.  Subsequently I ended up spending a lot of time feeling anxious and assuming things which turned out not to be right. In hindsight I wish I'd asked more questions when things were troubling me.  

Good luck with your decision.  xx

It is indeed a very personal choice Nat and I think having younger children probably makes it a harder one than perhaps it is for those of us nearer retirement age (or past it). Personally I didn't ask my oncologist or my consultant or my specialist nurse anything along those lines; what I did was in a one on one appt (no wife/family present importantly for me) with a young oncology registrar was to ask, as casually as I could, what she though the most likely outcome of my treatment would be. Fortunately enough she answered without any hesitation, "...complete cure..." which was obviously what I wanted to hear.

That was enough for me, I didn't want a detailed breakdown of percentages on 2/5/10 years survival, chance of recurrence or anything like that. My aim is to live to be 100+ (or die in the attempt). Not for a moment saying that's the right approach for everyone but it was for me.

How would you feel about asking for yourself and not sharing it with anyone? Difficult.

Oh and with treatment as it is nowadays my money would be on you both having a long and happy retirement!

Thankyou! His consultant talked before treatment about curing him, but I didn't get the impression that he meant it likely wouldn't come back in the future, but we didn't ask more. We later found his cancer wasn't HPV+, which I know makes it higher risk too. I think opinion will vary greatly, but I guess I am wondering if anyone regrets being told the odds. 

Thanks Mike! 

I have to say that I have a much better idea than my hubby of his odds (I work in Oncology in the hospital that hubby is treated in), but he would need to ask this for himself. 

That's another thing I didn't ask Nat, my HPV status. Nobody told me and I don't know to this day.

Hi Nat , personally I never asked what my long time prognosis and still don't , I don't even know the numbers or stages of the cancer. All I wanted was the tumour to be removed. I would hate the fact that I knew in advance ,all my consultant used to say was its treatable and curable but there is always a risk it would not work and the cancer could return. Well it did for me twice more but I am now 11 years since my first operation and was only told 3 years ago that there is not much chance of my cancer coming back .I don't know what lies ahead and don't want to Im just thankful that I have reached this milestone. My children were a bit older plus I had a mortgage etc so it was worrying times but it all worked out ok in the end . Hopefully I will reach a reasonable age as im sure your husband will do as the survival rate is so much higher these days and technology gets better all the time. My wife and my son are people who like to know what lies ahead and have been to these mediums , fortune teller sort of people . Wishing you both well on what you decide to do , there are no wrongs or rights in this case . Take care .

                                                                    Chris x 

His oncology consultants were very surprised that his cancer wasn't HPV+, and checked it twice. I was gutted, as I know it's much more curable!!! 

In my husband's case, we were told that he should be 'cancer free after the treatment', but he did not ask for, and did not receive, any information about recurrence statistics or long-term survival rates. I worked out the staging based on the information we got about size, spread, etc., and researched the statistics for myself - I was working abroad a lot of the time and felt I needed to know whether I should look for a new job closer to home with less travel. I did not share the information with him, but sort of assumed that he would have picked it up at some stage; and was quite surprised to find out three years down the line that it was a shock to him when his consultant told him it looked like he was beating the odds; then expanded on what the statistics were (47% survival after 5 years, but chance of recurrence very, very much lower after 3 years). I think it was good for him not to have known, on balance, and good for me to have known  - but I am not sure how I would be if it was me with the cancer.

I am medically qualified though not a doctor. 

I needed/ need all the information about my cancer that I could get apart from prognosis. That is information that no clinician or statistic can honestly provide; it’s an opinion. Should the worse happen and nothing can be done then I would expect a progression  

Hi, we were told without asking for prognosis etc.in the first consultation with the oncologist that my husbands cancer was incurable (I already had an inkling this was the case, my husband did not). That was approx 2.5 years ago now. In regards to the prognosis of the incurable cancer we knew it wasn't great as his life insurance paid out on the basis of terminal within 12 months. As I wrote before his diagnosis was 2.5 years ago and treatment has got him to a current stage of stability and although he has life changing side effects from his body been hammered with treatments he is currently quite well. We too have young children as well as as an adult child together and they are all aware of their father's prognosis of incurable in the past been managed with treatment. They know his treatment got stopped due to serious life threatening side effects from the treatment 6 months ago now and know that when the cancer starts to grow again there will be very limited treatment options if any at all. Due to the prognosis this pushed us into making wills and sorting out finances to be put in place for the children in the future, so it allowed us to financially prepare. But like I said this was 2.5 years ago and although things have looked very bleak at times - the husband is currently doing very well.