I got my NPI from my doc after dx and it was 5.52, I had no idea what that meant, but just put it on the internet and it doesn't look too good...oh well. Do I need to know these things - sometimes I do, others I don't. Oh well, better get back to cleaning and keeping my mind off it all xx
Thank you ladies. I sneaked onto Adjuvant and had a go at that, was quite surprised by how good the prognosis was, will have a look at NPI
You will find more info on the NPI on :
It shows the formula and also warns that it is an old test.
If you just put Nottingham Prognosis Index into Google it will bring up the right link. Like you I clicked on the given link and also got the bit about $34.
NPI is considered to be out of date with its info and Chemo Adjuvant is much more up to date. My onc gave me a computer print out from Chemo Adjuvant complete with graphs for me to keep showing my prognosis. This showed that at my age (64) and my diagnosis, in 15 years time 85 out of a 100 women would still be alive. Of the 15 who would have died - 7 would be from other causes and 8 would be from cancer. Had I had chemo this would have given a 2.3% improvement on the 8, and for such a tiny amount (whatever 2.3% of 8 is!) I decided against.
I had a look at the link that brightlight kindly put on page 1 of this thread but it seems I would have to pay $34 to read this article!
I think i read somewhere that being her+ worsened your prognosis but that having Herceptin cancelled this out. If this is true then it may not make any difference to what Adjuvant tells you. I assume that eventually, when sufficient research has been done, the program will be changed to take into account the newer knowledge.
I registered with adjuvant online, but couldn't find anything there relating to patients with hormone negative cancers who were Her2+ and requiring Herceptin - I just saw stuff about Tamoxifen/Arimidex as an adjuvant therapy.
My bcn got the adjuvant info for me after I asked her. The stats were quite scary as I knew they would be but she checked I still wanted to know before she went through them with me. I got the recurrence (99% without any chemo or hormone therapy !!!) and mortality stats.
To access Adjuvant just register yourself under the guise of a health professional. There are plans I believe to create a patient-friendly version of Adjuvant but at the moment you have to lie in order to access it.
To get full data you need to know ER status, node status, tumour size, grade of cancer and then the chemo and/or hormone regimen you are/will be on. You can view stats for both recurrence and mortality.
Every time I've googled for adjuvant online I can only ever find sites that can be accessed by health professionals. One said you had to get your doctors to access it for you so they could explain what the data was. What are others accessing?
I googled it redders and found I could get the figures to calculater straight away that way - no cost and no registration required
I clicked on the link that has been given for the NPI but I don't understand how to access it as it's asking for registration passwords and what institution I belong to. It also seems to be asking for 34 dollars!!
Interesting that this has appeared again as I posted a while ago as I'd had a look as I was applying for retirement from work.
Well, that app is still ongoing as HR want more info - they don't think I've a strong enough case to put before the pension trustees at the mo ( I could scream.....). Surgeon asked to see me last week to discuss his response to their questions and to show me that he was putting in the letter that whilst he can't say whether I'll ever be able to work again before age 60, my chances of surviving the next 5-10 yrs are 20-30%. He knew I knew this as the bcn had done a prognosis on Adjuvant online but wanted to reassure me that he supported me fully and that he thought HR are being unfair in making me jump through hoops - he's put in the letter that I've 'had and am having a hard enough time with this terrible disease at such a young age' never mind the side effects of the hormone therapy afterwards. Hopefully this will hit home with HR.
Like others said, I've only done this knowing that it wouldn't be brill and for the purposes of retirement. I WILL be in the survival group !!!
Interesting to look at the adjuvant online too - fully understand implications of looking at groups not individuals - find it interesting at least to get some figures, good for planning without freaking out as Jane RA has pointed out.
Will be good to discuss with Onc. Non-committal before when I asked about people 'like me' - asume the tumour has gone - belt and braces - can't guarantee local/regional recurrence will not happen - just watch and see. I like to be more informed where possible.
Scary, even taking into account the changes in stats over time (which are not specified) - the NPI ranks me at 8.8 with a 14cm grade 3 tumour and 27/35 lymph nodes - But NO mets
I have just read the original NPI article out of interest. http://www.springerlink.com/content/34614t545370502k/fulltext.pdf
The patient data were collected in 1982 - that is so long ago. Surely with improvements in treatment the scores should improve. Currently I am scoing a 5.8 so in the poorest prognosis category. So just hoping those advancements will improve my odds (grade 2, size 4cm and 5 out 11 involvement - but no mets)
Spot on swanie
The reason I have always wanted to know my prognosis, likelihood of dying of cancer etc has been so I can make rational decsions about the things I want to do with the rest of my life. For me, after primary diagnosis knowing I would probbably not long term survive breast cancer (and won't) meant I could take decsions about retirement and moving which with a better prognosis I would have taken differently.
There are somneme 'dreams' I have had to abandon though.
Hi - back again- i think a lot of you think the way I do - the one reason I would like to consider survival rates is not for panicing but rather a case of working out the best way of spending my life. I just want to make sure that I fit in the stuff I want to. Thanks for the suggestion for getting on the adjuvant online - I think I will give it a go. If nothing else it may give me a lever for pushing for that trip to see the Northern Lights. Gosh isn't it awful we have to have the excuse of maybe dying to live out our dreams..... perhaps we should go for them anyway. Good luck with living yours
cheers to you all Jacqui
Thanks for your speedy response Liz
I'm in the NHS and have been pensioned there for 22 years. Under our scheme, I could take my pension, if they agree I'm not well enough to work. At the moment, there's no chance I'm well enough, but also the focus of my life, plus my prognosis, has shifed my view on life considerably.
Good luck with the application, Rebecca
The retirement app only went in 3 weeks ago so i'm still waiting with fingers & everything else crossed ! I'm 43 so early retirement was not an option as you have to be 50 but I could ask for consideration for it & may get a slightly enhanced pension compared to what I have accumulated so far under a partial retirement scheme. That way I could look at working again for someone else in the future. I've worked for the company for 19 years & after much soul-searching decided it was the right option - only my manager, a union rep & a close colleague who's been there for me know about it. The alternative, knowing I'm not fit to do my job even though I look & feel well, would have been to take a lesser role on a part-time basis or resign & for once I've been selfish enough to think I've got to do it while I'm technically on a higher salary as it's final salary pension. I have got some small areas of bone cancer but they're not troubling me & the docs think it's under control so I'm being positive about the future but using a poor prognosis in what will hopefully be my favour !! Oh and there's osteoporosis from the chemo as well !!! My doctors have all had questionnaires sent into them from work, even before my formal written request went in, & they fully support me and have said they would support an appeal if I'm initially turned down.
So it's a waiting game now....
By the way I work as a mortgage advisor for H*l*fax so as you can appreciate the situation is not good at the mo anyway !!
Good luck whatever you decide.
Best wishes, Liz
I took early retirement (but at age 55). Having a poor prognosis certainly helped me get early retirement on ill health grounds. My consultant was very upfront on my application form about my chances of recurrence. I don't think he actually quoted the NPI but he was specific about my chances of recurrence and survival.a
Horrible way to get early retirement but knowing i would probably get recurrence I didn't want to spend any more time working.
very best wishes
My NPI is 8, and my adjuvant score awful too.
I'm considering applying for my pension (despite being only 40), as I sure as hell don't want to miss more years working when I could be with my two small children. Did your NPI score count in your favour, or did you have other factors to add into the mix?
If you want to register on adjuvant on line - just say you are a medical professional - not a problem.
My personal take on this is it is pointless to look, my stats were reasonably good and I now have fairly extensive secondaries, I don't think it helped me knowing the outlook was good at diagnosis and it certainly didn't help when diagnosed with secondaries...you really just have no idea where you fall.
I think it's everyone to their own choice & you really have to be sure it's not going to panic you as it can look scary.
I was diagnosed in July 2007 with stage 3, grade 3. 5 months of chemo followed by mastectomy & anc, then rads & arimidex, zoladex & zometa now. Didn't want to know at time but have found out now. Knew it was bad but as my friend says 'you are a statistic of one' . As I was thinking of applying for retirement from work got it done on NPI with a result of 7.4 & my bcn did it on adjuvant & even with treatment, chances of recurrence are about 80% & survival chances are about 25%. I plan to be in the good percentage and use to my advantage !
Thanks for your comments - occassionally these things crop up and I do wonder how beneficial they are, they do hold a horrible fascination. As people say in the end it is only statistics not personal so who is to know in the end - I know some one who had a far better prognosis that me and they died and here I am nearly 2 years later. Did try looking at Adjuvant Online but not a Healthcare Professional - so it looks like I would not be able to register.
I know with a grade3, 23mm tumour and 16/20 nodes things are not ideal but not the worst either. Think I will leave it at that - I was just curious...
cheers for now and good luck all
Either way, both of my scores are off the scale ...
Like JaneRA said, we all look at the results and interpret them the way we want to anyway!
My NPI was described as at least 6.8, which is classed as very poor prognosis, something like 13% chance of surviving. My adjuvantonline prognosis is much better, 63%.
I'm still hear 3 1/2 years after diagnosis so fingers crossed.
NPI is just a statistical tool using size of lump, er status and node involvment as criteria for likely recurrence. Score is simply an indication of what may happen but of course stats never tell you about what will happen to an individual. NPI is reckoned to be dated and adjuvant on-line more accurate..but again no predictions on individuals.
I think my NPI score was 6.8...and yep got recurrence but later on than expected.
Basically its better to have early breast canecr than stage 3 bc, better to have no nodes with cancer than loads of nodes with cancer..but always exceptions. If we have a bad prognosis then we hope to be an exception and a good prognosis we hope to fit in with the stats. But uncertainty is the name of the game and once your cancer becomes incurable you stop wondering about if you're going to die of cancer, and just hope it won't be yet.
Hi - Grade 3 45mm tumour, 4/13 lymph nodes involved. Age 42. I looked into this too Jacqui. My adjuvant online is 40% chance of secondaries. I did the maths for my NPI and got 6.8 (pretty much slam dunk statistically for secondaries). I know there is a newer formula (1999) and asked my onc what the pathology report said. It's now 6.9!
But hey - these are all statistics - not about us personally.
NPI says I'm off the scale, and that sadly is quite true. It is used every day to accompany pathology reports on tumours so I think we can attach some credibility to it.
Adjuvant Online is even scarier ...
Hi, My N.P.I prognonsis was 4.3 I think thats in the middle. I had 17mm grade 2 with 1node involved.But as b.c is so unpredictable I dont think it really means that much.
love and best wishes Mellx
I have not used this tool because it is designed for those with primary bc, and I was diagnosed with bone mets weeks after primary dx.
But it is said to be out of date!
There have been discussions on these forums, try searching "npi" in Topics and in Comments.
Hi - I was wondering if anyone else has dared to use this tool as an indicator of their prognosis? How reliable is is it? what is the general veiw?