Just curious as to weather anyone else has worked out prognosis this way.
karen
Hi Karen, my pathology report after lumpectomy (2 cm invasive ductal tumour with both DCIS comedo and cribriform, lymph node spread) showed 4.4 on the Nottingham prognostic index… My Onc didn’t explain it, and I am still, 4 yrs later, none the wiser. Hope you are.
Liz
NPI
Some years ago, breast cancer specialists in Nottingham worked out a formula, bringing three things together, which could be used to help give an idea of the chances of a cure. This has become known as the Nottingham Prognostic Index (NPI).
The formula is:
NPI = (0.2 x tumour diameter in cms) + lymph node stage + tumour grade
The lymph node stage is either 1 (if there are no nodes affected), 2 (if up to 3 glands are affected) or 3 (if more than 3 glands are affected). Similarly, the tumour grade is scored as either 1 (for a grade I, less aggressive appearance), 2 (for a grade II, intermediate appearance) or 3 (for a grade III, more aggressive appearance).
Applying the formula gives scores which fall into three bands:
a score of less than 3.4 - this suggests a good outcome with a high chance of a cure
a score of between 3.4 to 5.4 - this suggests an intermediate level with a moderate chance of cure
a score of more than 5.4 - this suggests a worse outlook with a smaller chance of cure
The NPI was based on information from a group of patients treated some time ago and as a result of improvements in treatment, it may underestimate the outlook for a person (prognosis). So, although the NPI is a useful guide, it is not absolutely reliable and there will always be many people whose NPI predictions do not match the reality of their individual outcomes. So the NPI is a useful guide, but not a guarantee of what will happen.
I had never heard of this nor have I discussed my prognosis with my ONC. Now I think maybe I should as I had 2 big lumps and 15 nodes affected. Mmmmmmmmmmmmmmmnnn Now I have something new to be worried about.
As you know, there are no guarantees with bc, lmlauder. Some with a so-called good prognosis will be unfortunate enough to get a recurrence, whereas others with a poorer prognosis will be going great guns years later.
We none of us know on which side of the survival line we will fall.
Mcgle
Nottingham is too inexact to be helpful. Among the things that it doesn’t take into account are hormone receptor status and her2 status. It also doesn’t include anything on the treatments used.
Personally, I don’t think prognoses are that useful for individuals, probably because I have done alot better than expected.
Any prognostic index will always only tell you about groups, never about individuals. At diagnosis in 2003 I had a poor Nottingham score (6.8) and also poor on the Adjuvanti index which is probably more accurate. I always understood that those poor results were just an indicator…but I wanted to know them because they influenced decisions which mattered to me…like deciding to retire early. In the event I got a stage 4 regional recurrence in April…a rather later recurrence than statistics and my onc suggested would be the case…but not surprising.
I think prognoses and statistics are helpful as long as you always understand that they can’t predict what will happen in detail to an individual.
Jane
Dear Karen,
Just in case you are plannng on working out your prognosis.
(1) The index is about groups not individuals, as explained in Jane’s message.
(2) The data are based on women who are at least five (or perhaps ten) years post diagnosis. This means that the figures are at least five (or perhaps ten) years out of date. Treatment has improved dramatically in the last five years and even more so in the last ten years. Those women won’t have had as good treatment as you have had.
Best wishes,
Sue
Dear moderator,
I have tried to contact you re removing this post/thread i started…could not find out how to do so…therefore have reported my own post…reason being as follows
In retrosepct I do not think it was a good idea for me to have started this discussion…I do not want to cause stress/worry to anyone who might try to work out their prognosis from this post…and come out with incorrect or out of date information.
Therefore would you please remove this discussion i started.
Thank you
karen
Dear Karen
I think this is a good, important and informed discussion. mcgie’s summary of the Nottingham prognositic index is accurate and clear and something many women will be interested in. We all choose what it is that we want to read and what we want to ignore at various stages in our experience with cancer.
We can’t protect others from the possibility of being frightened. Being frightened comes with the cancer territory…but for many of us knowledge makes the fear more manageable and bearable. There is a mass of inaccurate nonesnse about cancer on the interent but sites like this can help us all to understand the difference between what is and isn’t valid information.
best wishes
Jane
Dear Karen,
Don’t worry. It’s OK.
Best Wishes
Francine x
I think I would be very reluctant to work out my prognosis.
I guess I know I’m now pretty unlikely to make it to any great age. But I also think, having BC doesn’t make you immune to any of the other factors in life expectancy (like accidents). I mean, none of us know how long we’ve got, really; we just have to make the most of each day. I feel that I am very, very lucky - not because I’ve got BC, obviously; but because I’ve got it in a time and a place where treatment and support are freely and unstintingly given. I think every day how deeply unfair it is that women like me with children and busy lives to lead die simply because they live in the wrong place, and with no guarantee that their families will manage when they are gone. There are millions of women out there for whom life is far tougher than it ever will be for me, regardless of my prognosis.
Please don’t think I’m being flippant. BC is a terrifying and horrible disease that wrecks lives; but I still feel lucky, almost guilty, that I am cared for by doctors will do everything they can to give me as long and as comfortable a life as possible, however long that may be. And I’m going to do my best to make every day count.
Love to all, Stockbeck
Thank you for your comments jane…I was concerned I may of opened something that may offend others who didn’t wish to know…but your comments are absoluately right…we can’t protect everyone.
I hope you are managing to cope with your new treatment.
best wishes
karen
I think Stockbent’s post is very refreshing. What a relief to see someone writing in an ordinary and straightforward way that she’s pretty unlikely to make it to a great age.
Unlike Stockbent I have always taken it one step further and I am also interested in statistical predictors, but the bottom line for me…realised very soon after diagnosis was precisely what you say…bang were the dreams of a life into my 80s and 90s which I had somehow considered my birthrate till then.
I think there’s a cancer culture which encourages an enormous amount of agonising over prognoses and statistics and that women with primary diagnosis in particular can go to extraordinary lengths to protect themselves from the possibility of acknowledging what for many has a certain inevitability.
We live in an age where celebrity deaths are mourned very publicly and openly as though they were family members but to speak in anticipation of our own premature deaths is definitely off the radar and not considered a polite part of cancer conversation.
We need to find more ordinary ways of saying what is true: “I don’t know if my cancer will return but that there’s a good chance it will” or “there’s a good chance it wont” or “it may stay In remission for a few years” etc etc.
Like Stockbent I think its important to acknowledge the relative safety of our lives…those of us facing premature deaths from cancer in the affluent west may well have lived longer than our sisters in some other countries. But ultimately just as comparing absolute poverty and relative poverty can miss the point, so can comparing relatively comfy cancer treatment to the tribulations of war torn countries…and anyway there is a cancer ‘epidemic’ around the corner in Africa.
Thoughts for another not so sunny day. Every day does count…but so do the plans we can make for the shortenened number of days some of us know for sure we have. This capacity to plan with more sure knowledge is just about the only privilege of not waiting instead for that damned bus.
Jane