Nottingham prognosis index

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?

Yours Jacqui

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But it is said to be out of date!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, 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

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 - 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 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.

Jane

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.
Kelley

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!

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

Jacqui

Hi,

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 !

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.

cathy

Lizcat,

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?

Rebecca

Hi Rebecca

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

Jane

Jane … we are so on the same wavelength there!

Thanks for your insight.

Hi Mum2Two,

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

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

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

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.

Jane

I have just read the original NPI article out of interest. 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)

Bright

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