Hi
I’ve been given the option from my onc to know my prognosis figures, not sure entirely what the fidures are going to tell me but I really don’t know whether to find out or not.
I feel generally quite positive about everything, but since my onc told me he has the figures I can’t stop thinking about it.
What should I do? Any advice?
Mummy29 x
MMM, is he saying this is what your reccomended treatment is, but would you like to know the figures so that you can decide wether to have it or not? Or is your treatment set in stone and the figures are just information?
Are you likely once you know the figures to question his judgement, or will you just go with his recommendation?
Also do you realy understand statistics? If he said, using this treatment will increase your chance of not getting cancer by 30% would your first thought be yeh go for it. Or would you know to ask, but how big is that risk??
For instance, let us say, with completely made up figures, that if you look at 100,000 women who were not given a certain treatment then 3 had a chance of getting cancer again, then that means a treatment giving a 30% improvemnt would mean that in that group of women only 2 might get a recurrance if the had the treatment, so only 1 woman in 100,000 is helped by the treatment.
these are made up figures, but once you understand exactly how the figures work then you can make an informed decision about wether the side effects are worth the small reduction in risk.
I have read on these threads of people not having certain treatments because the increase protection is not worth the side effects. But then others might say–throw the whole works at it , i might just be that 1 woman in 100,000.
I hope i have not confused you-- I think i might have confused myself though. Personally if i was offered figures i could not turn them down , but the poor guy would have to spend the whole afternoon explaining them.
“prognosis” usually means “life expectancy” or “chance of success” depending on your type of cancer , I think. I never asked since I reckon there are so many factors that can interrelate that stats would not really help me as an individual - but some people want to know…
Hi Mummy29
I asked a few weeks ago and wished I hadn’t!Was told that if 100 women had same diagnosis as me then in 10 years 60 would be alive.I then asked did the figures include the cancer being Her2 and Herceptin and was told no!
So as far as I am concerned the figure is useless and presumably based on treatment given 10 years ago.
Best of luck with whatever you decide.
Tracy
x
I am to much of a coward , when I was between surgery and chemo my BS told me my score was 4.5, 9 being very good , and that I caould be treated for 5 years. I thought that this meant I had a poor prognosis and only had 5 years life expectancy, so I never asked and still havent asked for clarification. I am doing fine 2 years on, and I cannot see me getting anything positive out of knowing how long I have, or how long the stats give me
take care , good luck
Hi
The prognosis is calculated by a computer programme and is specific to you. They plug in all the info they have about your cancer and get out figures for 10 year survival rate and recurrance rate - with and without further treatment with chemo, etc. It doesn’t take into account the affect of rads.
I wanted to know my stats. Following my MX, I was told that with no further treatment I had a 75% chance of being here in 10 years time. With chemo and tamoxifen, that rose to 88%. Without further treatment my risk of recurrance was 50%, with chemo, etc it was 25%. Defo a no brainer and I reminded myself of those figures everytime I felt totally fed up with chemo.
I always like to know what I am up against, rather than worry about the unknown, but it is a very personal choice - and remember that these are statistical predictions - not absolute truths!
Hope this helps
Dx
Hi
It is entirely up to you, and I did ask my onc mine- even though I had already looked online and I knew it anyway, I just wanted her to talk me through it. BUT if you are under 35 there are so few cases of bc statistically the predictions are unreliable and you need to be treated on an individual basis. My onc told me this and one of the online predictors makes this clear. So already unreliable statistics could be even more unreliable.
Dx
Thanks for your comments.
Midge - what online calculators are the one’s you used?
The common one is the Nottingham Prognosis Indicator-Adjuvant Online is more reliable but a bit harder to understand and there is a NHS one I think.I’d always ask your consultant and he can talk you through the figures and answer your questions.I definitely wanted to know but we are all different.
Vx
Hi
These are not really for everyone and you may want to speak to a bcn or onc.
One is adjuvant online, but for that you have to pretend to be a medical person. Or predict nhs or cancer math. You basically type your stats in, but they are just stats, the do not say how well you responded to treatment. So there is a big health warning about them. So much so I have never told my husband or family what I found out. I don’t think it would help and they have never asked. For me I just kind of wanted to know what the computer thought.
Dx
I had a look online and saw basic figures but spoke to my bcn this morning and she said that the figures produced that my onc has does not include the effect of herceptin or other medical factors so would not be accurate. She said she doesn’t rate them herself.
I will speak to my onc about it when I see him on Wed, but I think I may just leave it and not know for sure. I have a basic idea of what I’m dealing with from looking online but I don’t see the point in seeing the actual figures if they’re not taking everything into account. It may risk my generally positive attitude about this whole thing and I think that’s important.
I think I’ve rambled! Hope I make sense!
I specifically asked my onc for figures, but he said that because I’m HER2+ there’s no point, because it doesn’t cover HER2 status and doesn’t include enough people who’ve been treated with Herceptin for primaries. I have had my own little play on Cancer Math, but can’t remember the results. Suffice to say, I had negative nodes, small tumour, and have had surgery, chemo, Herceptin, rads and Tamoxifen so I’m throwing everything at it and intend to live to a hundred.
Midge, I really think you misunderstood the info you were told. Because of that scale of 9 it doesn’t mean you’ll be pegging out in 5 years, and if it’s something that has played on your mind I would suggest you speak to someone for further details.
Hi
CM sorry have I missed something? I can’t remember saying anything about a scale, but these days with chemo brain who knows?
Dx
CM - I think it was Truffle Shuffle who mentioned the scale, not Midge.
x
The most accurate online prediction tool seems to be the UK NHS one, especially if you are ER negative. It’s at predict.nhs.uk.
There’s a through presentation explaining the data it uses at the BASO site - it was presented at a conference in 2010 (think it was the BASO/ABS one). You can lsten to the presentation there and see the slides if you;re interested.
Predict accounts for HER2+ but does not cover HER2+ treated with Herceptin. At the conference, they said that that data on that would be available from July 2011 and incorporated into the tool (but it doesn’t seem to be on there at the moment). It seems CancerMath and AdjuvantOnline have their figures way out for HER2+ (sadly, overestimated).
As for whether you should know your prognosis, I fall into the ‘why not’ camp. KNowing mine (= a bit pants) has been important to me and it has influenced (in a positive way) the decisions I make now.
That’s interesting, because directly comparing the three tools my best prognosis is on the nhs tool not cancer math or adjuvant online. But I dismissed it because I thought it was only done using data from 5000 women in one area of the UK. As only about 20/ 25 % of women are her 2 + and even fewer are in their 30’s like me I started to wonder about how reliable there data is. However I thought adjuvant online’s data base was much bigger, so put a little more credibility on there figures ( not loads though- too aware of the individual nature of bc) . Sorry if I have drifted off toPic.
Hope you are all well.
Dx