lies, dam lies and statistics
lies, dam lies and statistics Hi everyone,
I’ve been on the Nottingham Prognostic Index and found that without chemo I have a 13% chance of surviving 10 years. With chemo I have 80% chance of surviving 10 years. However this figure is flawed in that it includes women who have died from some other reason than bc. Does anyone know of any accurate statistics that show out of the other 20% who have died within 10 yrs how many died of the cancer and how many from other causes. You would think with the amount of data that is collected these days and with death certificates we would be able to sort out this anomily as, I feel, that presently the survival figures are even better than those presented
karelyn
Hi Karelyn,
I can’t help you with any information but i wondered where you got your information. Was it a website? I’m very interested although confused by these statistics. My NPI is very poor but i’ve seen no statistics about how my chances change with chemo apart from adjuventonline.
Best wishes
Kelley
We’llnever fully know Hey Karelyn
I wouldnt get hung up on figures it doesnt help at all! No figures produced are ever going to be flawless in all depends on how the figures are collected and analysed.
It is not that it is lies¦I have chosen to ignore figures as i work in a strategy and research team and conduct surveys and fact finding missions all the time and know fine well that data can be interpreted any way you want so you have to question who is conducting the work? for what reason? how are they collecting the data, has this data been weighted …i could go on but its such an anorak subject!
Anyway I know its frustrating not being able to get the information we want especially when our lives are hanging in the balance… from what ive learnt about this cancer malarkey is no one knows that much and until they do find a clear cut, out right no one dies of it (I’ll whisper it) cure no matter how many stats we read it aint going to do anything more than scare the crap out of us, so my advice would be to not read them hun
All the best, I don understand your frustration
Lynnc xxxxxxxxxx
Stats Hi Karelyn
Stats are only that - population based studies, none of of us know which side of a survival line we will fall - breast cancer is an unpredicatable beast. I (and anyone on this site) will have already come across people with “good prognosis” who have died from BC rapidly following diagnosis and equally others with a poor prognosis who are alive and NED still.
I also have an issue with figures - is 10 year survival disease free??
My view of NPI is that it is rather old to be accurate - doesn’t cover enough “variables” and chemo now vs what was used 10 years ago is different. adjuvantonline.com is better in that it looks in much more detail at our individual factors , ages, cancer sizes, number of nodes, type of chemo… Then there is the herceptin factor to be added in if you are HER2.
Long term survival data, takes, by its very nature a long time to collect and there is no “simple” diagnosis of BC. And as soon as a figure is obtained it will be obselete as new data will rapidly follow to change it.
It is very hard not to have “tunnel vision” to poor stats ( as mine are - details on my profile) however I I try not to waste mental energy on arriving at my “exact” prognosis as it doesn’t tell me exactly how long I will live - just try to live my life as well as I can, doing what I want now when possible rather than putting things off for years.
Best wishes
Sandra
Hi Karelyn Like Sandra, my understanding of the NPI is that it is pretty dated now. It doesn’t take account of a lot of the new treatments, such as better chemo, tamoxifen and the aromatase inhibitors, and now Herceptin, which are beginning to make such a difference to 5 and 10 year survival stats. Adjuventonline is better, if you must chase probabilities and percentages.
None of the statistics can be applied to individuals, they just describe large population groups. We simply can’t predict which side of the line we will fall. I know people who were given a very poor prognosis, who are still well years after first diagnosis, whereas I was given an excellent prognosis (all the indicators were very favourable) yet I had a local recurrence under the lymph node scar last year. Breast cancer is just so unpredictable.
As for your query about figures for other causes of death which might skew the bc statistics, I personally have not come across anything like this and really doubt that they exist.
Kathy xxx
Ten year prognosis figures Hi everyone,
Ten year prognosis figures are always at least ten years out of date because they are the prognoses of people who were diagnosed at least ten years ago (1996).
More recent figures (five year prognosis) are much more favourable, I believe.
Best wishes,
Sue
query Hi Karelyn
I agree with some of what has already been said…particularly Sandra’s comments about statistics. Adjuvant online is generally considered to be more up to date than the NPI.
I wonder though where you got your verison of the NPI from because I’m surprised that anyone would have such a difference between chemo survival stats and non chemo. Chemo makes much less difference to survival than we like to think. (in my case my onc reckoned about 5% though I think this was probably conservative.) I think we all forget that its surgery that saves lives as well as other treatments…hormonal tretaments, chemo, herceptin, and radiotherapy all made incremenatl difference which when added up can be quite substantial…but often the die is cast so to speak at diagnosis…dependent on grade, stage, type of cancer.
I think stats give us a bit of a clue about possibilities and probablities. As I’ve said many times before there are still well over 12,000 people (mainly women) dying each year in the UK from breast cancer and that’s not a lie or a damned lie but an awful fact.
Jane
Meaning of sip11 asked if this meant disease-free.
I’m afraid it doesn’t and you only need to be alive to count as a survivor.
Some of the users of the secondaries forum are 10 year survivors or coming up to that point.
NICE came up with a recent statistic that 50% of all breast cancer patients would ultimately die from their disease. It is a recently published statistic so I am inclined to believe it and not assume it has been significantly affected by new treatments.
All one can do after primary treatment has finished, is try to live your life as if you will be one of the lucky ones, while being vigilant for signs or recurrence or secondaries.
I think we should try to nail whether or not NICE has actually said that 50% of all breast cancer patients will ultimately die it.
As I said in the “message for Tina thread:
In 2003, the National Institute for Clinical Excellence (NICE) published a document concerning the appraisal of Capecitabine for Metastatic Breast Cancer (technology appraisal 62) This document can be found on the NICE website. In this document, on page 4, NICE quotes the following statistics:
“Between 16% and 20% of people initially presenting with breast cancer have advanced disease, with distant metastases, and around 50% of those presenting with early or localised breast cancer will eventually develop metastatic breast cancer.
The same statement was published in July 2006 in an appraisal of Lapatinib.
That’s not the same as saying that 50% of all breast cancer patients will die of breast cancer. Some of those 50% who develop mets will die from other causes, unconnected with breast cancer. Some of the 16-20% who initially present with mets will die of it and some will die of other causes. I’m not aware that NICE has pulled this information into one statement that says what percentage of all people diagnosed with breast cancer die of it.
I’m all for not hiding from the truth about breast cancer. It may well be that case that around 50% of people diagnosed with breast cancer die of it, but I’ve yet to see a statement from NICE that explicitly says that. If anyone knows where to find one, can they post a link to it?
A Few Statistics Hi
We have been reading this thread with interest and wondered if we could clarify a few statistics;
The lifetime risk of developing breast cancer in the UK is 1 in 9
Breast cancer is now the most common cancer in the UK, with around 42,000 new cases diagnosed each year.
Breast Cancer is the second biggest cause of death from cancer in women in the UK.
In 2004 there were 12,417 deaths from breast cancer in the UK. 12,347 (99%) in women and 70 (1%) in men.
Latest survival data shows that the estimated five year survival rates for breast cancer in England and Wales are 80% (2001-2003), and 77% in Scotland (1999-2001)
Age standardized relative survival for women diagnosed with breast cancer in England and Wales is estimated at 72% for those diagnosed between 2000-2003
Theses figures have been taken from the Cancer Research UK website, and I have included the link to the relevant page;
info.cancerresearchuk.org:8000/cancerstats/types/breast/?a=5441
I hope this helps
Best wishes
BCC Host
The 50% NICE stat was actually on the BCC main page for a few days a while ago, I nearly missed it, it didn’t exactly stand out.
Found the piece I mentioned above on the home page News Releases archives, dated 8.05.06. ‘‘New voice for advanced breast cancer patients.’’
Thanks Belinda for finding the 50%.
Interesting that among the stats BCC host has posted that one was missing (and that’s the one we’re discussing.) Strange how little publicity is given to this, and how much to the 5 year survival stats which are so misleading…
Jane
Hi Jane, yes it’s probably time those 5 year survival stats were dropped altogether.
So very misleading. I’m surprised (or am I anymore?) that BCC have posted them here without explaining them fully.
Thank you for posting the link to the cruk site moderator. Worth looking at - follow the links for BC survival . This has IMHO a better breakdown of survival stats than the “general” figures we often see quoted ( contains a breakdown by age and stage at diagnosis) - the limitations of statistics as already listed by many of the previous posts obviously still apply
Chemo and a bit OT- the small percentage benefits ascribed to chemo underplays its survival benefit. Surgery gets rid of the obvious problem. The RT kills the localised cancer cells -but not always all- and chemo clears [hopefully] what’s left, remembering that not all the cancer cells may be localised. We all know that even then bad cells may still be there but at least most/nearly all get killed. So if we treat chemo as an optional minimal aid we may be leaving a few tiny cells which will reappear as nasty bumps or we may be speeding up an inevitable recurrence. In the bad old days of only surgery and RT survival rates were awful. Chemo and hormonals are what have given usl the extra years of life.
reference for article on prognosis of people diagnosed under this came out in 2004, shortly after I was diagnosed aged 48
Mole Thanks for providing this reference. Unfortunately a google search shows no matching document. Could you possibly let me have full details (author, date and place of publication etc) so that I can conduct a manual search for it?
Is this the same article as the one I asked you for details of in the ‘Scientists understanding metastasis thread’? If not could you please let me have details of that article too so that I can read these very frightening statistics in context? Thanks.
Best wishes
Roisin
Copy and paste Hi Rosin
If you copy and paste the link Mole provided it should take you straight to the article…(worked for me!)…an interesting one about a long term study of those diagnosed with breast cancer under age 50.
best wishes
Jane