Hello
wrestling with whether to ask onc about chances of recurrence/problems in the future etc…is it useful to have this information or is it better to take the treatment and get on with life
any thoughts???
My thought is that it’s not worth it. Statistics only tell you what is likely to happen for a group of people - not for an individual. You could have a 95% chance of survival, but be in the 5% who dies. Or you could be given a poor prognosis, but be in the group who lives. No-one can tell you which side of the dividing line you fall. So what’s the point getting worried about it?
I agree with Roadrunner about statistics and how they can be misleading, however, personally, I want to know my odds. And being the contrary person I am, if they are good ie 95% - I will cling on to that with both hands. If they are poor, I would hope to God that I was in the percentage that wasnt going to die!. May seem weird, but I need to know everything!
Cathy
I think everyone is different. Its true that statistics can never tell you what will happen to an individual. But they can be a useful guide about possibilities and probablities.
I have always wanted to have a reasonable assessment of what’s likely to happen to me. I had a poor prognoiss at diagnosis (age 54) and knowing this I decided to take early retirement and enjoy a different kind of life while I could. If I had had a better prognosis I might well have continued working full time.
I did get a recurrence though after a longer period than I expected and a regional recurrence, not secondaries imemdiately as I also expeceted. Now I know I’ll almost certainly die of breast cancer but I have not asked ‘how long’ becuase I know that the answer in cases like mine can never be accurate. (who knows and lots of ifs and buts about treaments)But I am spending my way through my savings cause tthere won’t be a rainy day in future…this is my rainy day.
You can have information about your prognosis and still get on with life…its not one thing or the other. ‘Knowing’ doesn’t in itself make you more or less worried I find.
(sorry just realised this is in the younger women’s forum and I’m not young.)
Jane
I have a very blunt Onc who generally just gives out stats regardless of them being good or bad, when I had my first meeting with her, she certainly didn’t hold back on my serious crap path report, she demonstrated with her hands the level of my nodes involved and the fact I had to have everything, just as I was absorbing all the info and signing the consent form she then added that treatment wasn’t for cure but for maintaining the cancer to buy me time before it would come back. I was 37 and my kids were 8 and 6, I broke down in tears and walked out, after that I never wanted to hear numbers.
I still have never requested my stats because I know they are bad and I think I would ruin every special occassion weeping that it will be my last, although knowing I have fallen on the bad side has meant making some changes, i.e. my annual work shares which I always banked in my share account as my retirement nest egg are now paying for a family holiday to Florida, I am going to Paris for my 40th this year with girlfriends to the moulin rouge (sod the family party) and I also arranged surprise trip to New York last year for hubbys birthday (another place I have always wanted to go). Have also taken daughter to west end musicals and to see girlie bands in concert. (things that I might have left to when the kids got older, but am doing now as and when opportunity arises).
I had scans last year which all came back as NED, I have managed to kick the ticking time bomb feeling for the moment and dont want it returning for as long as possible, perhaps if/when I get to 5 years that will be the time for me to ask my stats.
Each to our own,
Debbie
I had this dilema only today and decided against asking for the stats. I just hope that somebody will tell it to me straight if necessary as I have two children aged 7 and 9 and I’m still paying in to my pension!
Generally I think, well I’m alive now so make the most of it.
love
Pauline
I’m certainly getting the stats as I feel it will help me to understand what treatments I’m having and what the statistical benefit of each of them is. I couldn’t put myself through the chemo that I’ll probably be offered (almost certainly in fact) unless I could tell myself why I’m doing this each time. I know we can all do it but there’s nothing like a bit of incentive in my opinion.
Of course everyone feels differently, you could always ask the onc if you can have the later if you change your mind.
But I have a friend who’s wife was told she had a really good prognosis of 95% and she got secondaries, she was then told only 1% chance, and since then she’s been liveing with the attitude that she always seems to end up on the other side of where they think she’ll be. She’s been living with it for 13 years now I think and still going strong and enjoying life.
So I’m taking the attitude of see them for what they are, just numbers that can guide us.
They’re not a lottery ticket that you win or lose.
Just my point of view as we geeks say YMMV (your mileage may vary), good phrase I think.
Angie
I have to say I would like to pick and mix the comments above.
I agree with roadrunner about 95% chance of survival but I could be in the 5% none survivor.
I am contrary like Kathy and think I want to survive despite statistics. JaneR I like the idea of taking early retirement but not with the circumstances you are in at the moment. Debbie, go for it! I wish I had the nerve to blow the money, I worry I would leave my family with nothing to support themselves with. But as my husband says that will be their worry not mine if the worst happens.
Like Pauline I would want to know if I had a young family to consider. Like Angie I wanted to know the best treatment for me and if it was seen as really necessary.
But what I did in the early stages was to ask my NPI score, supposedly this system is out dated but it is still in use in Nottingham. It wasn’t good and I bitterly regret asking as it is like a nagging thought that pops up every time I get to feel better after treatment.
An NPI score if you are not sure is a prognosis indicator based on several facts relating to the cancer cells and stage on DX.
Hi all,
this discussion has really interested me as it is something I too have been ‘wrestling’ with lately. Thus far I have chosen not to ask for stats and such like. However, this is now changing and I find I am becomming ever more ‘curious’.
I am HER2 +, however my Herceptin had to be stopped after No3 as I have heart failure (I’m 35). When I asked my oncologist (well, the monkey and not the organ grinder) realistically what were the chances of me not getting a recurrence or developing secondaries (I had 25/28 nodes involved) he pretty much skirted, rather uncomfortably, around the whole issue. Whether he honestly didn’t know (although I doubt it!), or just didn’t want to say I don’t know. He just muttered something about having to keep a close eye on me and offered me counselling (which I’ve already been having for some time).
So, I’m still none the wiser! It took me ages to pluck up the courage to ask about my prognosis and I’m still no clearer. All I have to go on is stats on websites such as cancerbackup. If I feel ‘brave’ enough I think I’ll raise the subject again when I next see the onc in June,
Interesting chat this one,
Kelly
-x-
wow!
This is a hot topic…I am erring towards the first respondants view. I’m starting to think knowing me I would not enjoy being here if I was thinking about ‘my bad odds’ and the kids would have an anxious mother to deal with!! and as you say, who knows what side of the odds you’re going to be on. A friend said to me-‘well, i’ve had this this and this…my prognosis was a lot worse than yours and my odds were 80% so you’ve got to be better than that…’ so I think i’ll stick with that and get on with it!
but who knows I might change my mind…
good luck to all of us
Lou
interesting discussion. I have to say that i requested my prognosis very early on. Whilst i agree that they are ‘only’ figures, they can be a useful guide in deciding on treatments too - and justifying them. My onc did mine from adjuvant online - and i have to say that without the information i would have faltered over my chemo and probably given up. Seeing what a possible diff it could make is all that keeps me going.
Very interesting discussion.
I have a vague recollection of 85% being mentioned at my post op appointment ( I was grade 1 with no lymph node involvement but intermammory node affected). The consultant was very upbeat and laid out the game plan of possible chemo ( it had to be discussed due to intermammory whatsit), certainly rads and possible pills for 5 years (I’m now on tam as was er+), then went on to explain that I would be kept an eye on for the next 10 years, by which time I would be old enuff to be in the regular mammogram program anyways. The onc gave much the same information but cut out the chemo issue as the ‘team’ had discussed the pros and cons and decided that the downside far outweighed the benefits in my case, she too mentioned more than once the 10 year follow-up plan.
I think as others have said getting the odds is a personal thing and everyone needs different levels of information. I personally latched on to the fact that these ppl are planning to see me for 10 years so they must think that I have a good chance of still being here to go party for my 50th.
Although i’ve never had BC myself, my mum did and she was told she had 5 year to live… I was young at the time and she said to tell her that when I turned 18. She fought a valiant fight i’ll be honest she had it rough, but the worst day of my life was the day i turned 18. 
She couldn’t understand why till i explained that it was like ‘d day’.
She had a met when i was 19, and again when i was 27. She decided not to fight 3rd time around, I supported her decision and have never regretted her being able to decide when she had run out of fight. All in all she proved the dr’s wrong about the 5 years though - she lasted 17 years after BC.
If you really feel the need, then that’s what you’ve got to do, but if you give it your best shot for as long as you can, then that is what you’ve got to do too! 
Hi All
Interesting discussion, when I was diagnosed I chose not to ask prognosis, I was grade 3, stage 3 triple neg with lymph node involvement and decided I’d rather not know. I had chemo before surgery that worked 100% which they said improved my prognosis considerably. It bugs me now that I’ve never found out, but I’m back for 2nd year check soon, maybe I’ll get the courage to ask, I don’t know what it is about hospitals and doctors but I go in with questions and as soon as I get in that room I go to pieces. I’m not usually such a coward.
Lisa X
Lisa as a fellow triple neg who has just had her 2 year check up you will be pleased to know that your prognosis gets better the more time out from dx. Triple neg tends to come back earleir than over bc’s, but our stats improve very quickly and I was told that after 5 years disease free from a primary triple neg bc you are very unlikely to have a problem.
Good luck!
xxsam
Hi all I decided to find out how likely I would have a reacurance as I was only 24 at the time and really wanted to see if I should go on to have kids or not Ect. My oncologist and family begged me not to but it is something I felt strongely about. I knew it would be quite high as they were giving me herceptin and loats of other treatment. In a way I wish at times they had not told me as I do worry alot about it but they do get it wrong and noone can determine our future some people like a friend were told they had 3 months to live and 2 yeras on she is still fighting and doing well. I have to say I enjoy life now to the full I try to treat each day as if it was my last I no longer moan about stupid little things and I dont put up with friends petty problems that they are always tring to tell me about, (boyfriends, headaches periods pains Ect)
I guess only you can decide what is best for you if you know you will worry about it all the time then maybe dont find out as it is hard to handle sometimes.
Sorry I cant be much help
Love Clairemm x x