Ladies,
Does anyone know if the Nottingham Prognosis Index is still widely used by Oncolgists dealing with breast cancer? I was diagnosed just over 3 years ago and by chance only recenly found out my ‘score’. It suggests I have an intermediate risk, presumably of recurrence/secondaries.
On the other hand, when I got my diagnosis after surgery I was offered to take part in a radiotheraoy trial for which you had to be considered low risk.
So I was just wondering if the NPI is still regularly used and how much its’ relied on. I have read a bit in CAncer Research UK which says it was based on people diagnosed some time ago, so may not take into account more up to date treatments.
Does anyone know?
Best wishes
Linda
I think it’s way out of date. I believe a lot of the research was based on the 1980s, way before modern understanding of bc and modern treatments. It doesn’t take into account the treatment regimes now available, the new statistics that are out, the new research on diet and exercise, the new research on social networks and the positive effect they can have on many cases too…etc etc.
There is an improved version out, but it doesn’t seem to be that improved either.
I think it’s a complete frightener for people as it stands.
Ann x
Hi Ann,
Many thanks for the reply.
Muat admit I was surprised to see my score noted in a routine letter from my breast clinic. The fact that it was quoted suggests my hospital still uses it, but I don’t know why if it’s all a bit old hat.
I can see from the CRUK site that the way of working out the NPI means anyone with grade 3 (mine was) would not get into the low risk scores. That goes against the fact that I was offered the trial I mentioned.
As you say it can be a frightener - my oncologist told me I’ve a good prognosis so I’ll stick with that. I’m just glad I didn’t get the letter until recently, 3 yrs on from diagnosis. I was so terrified in the early days - still am sometimes but its got better - that every little negative or semi-negative bit of information reduced me to a heap of tears and anxiety!
Linda x
our pathologists always calculate it… its still generally a good indicator of prognosis… the lower the number the better the outlook is… its not based oin treatment is based on pathology of the tumour so in that respect its quite good… the NPI is the prognosis when the tumour is diagnosed and without treatment.
but like every prognostic tool its only an indication of risk and not actual fact… if you have a small low grade hormone positive tumour with no nodes the prognosis is better than for somebody with a large, high grade, hormone neg tumour with lots of nodes… yet in reality some people in the first scenario will get progression of disease at some point and some in the second scenario will be cured… although its much more likely to be the other way around for the majority and depends on things like the treatment and how responsive the cancer is to the treatment.
anybody with a grade 3 tumour no matter what size it is would still be considered an increased risk at diagnosis and therefore are normally recommended chemo of some type unless they are physically unable to tolerate it.
Lxx
Hi Lulu,
Thanks for the info. I know you are in the profession so it is very interesting to get your input.
Although I had a grade 3 my Oncologist did not recommend chemo. I was aged 52 at diagnosis. Following a WLE and SNB, was found to have had an 18mm tumour, negative nodes, clear margins, no lymphovascular invasion, HER2 negative, 100% ER and PR positive. Had Rads, 2 years tamoxifen now on aromasin. I asked about chemo and my ONC said she thought it would be ‘overkill’.
I fretted about the ‘no chemo’ for sometime but have since come across other grade 3 ladies on this site who did not have it. I guess, as with everything else, it is down to your own specific circumstances.
Linda x
being very generalistic here but women over 50 do not tend to have such a good effect from chemo as women under 50 and depending on the menopausal status too.
women over 50 with highly ER positive tumours tend to do extremely well on hormone therapy and with lager tumours our ladies sometimes with have neoadjuvant AI treatment to shrink the tumour first.
the guidelines for everything vary across the country and as i said most would offer chemo for grade 3, but lots of women decline even if offered… at my unit you would most likely have been offered it… but your prognosis is still very good even without… 2 1/2 % difference between having it or not… think our unit gives if its 2 or over but some units maybe use 3%.
Lulu
Hi Lulu,
Thanks again for this. Although there are no guarantees of what may happen eventually, It really helps to know my prognosis is considered definitely on the good side, with chemo or without.
Best wishes
Linda x
Hi,
My consultant sent me a copy of the letter to my GP with my NPI in it, which was 4.4 (Grade 3, no nodes and 2cm). His view was that I was in the middle group where the decision on chemo could go either way, but he recommended chemo based on my age (35) and the fact it was triple negative, so no hormone treatment available.
The way I look at it is that in order to get 10 year stats they will always be out of date, as the treatments move on so much in that period, that the outlook can only be getting better all the time.
Jen
What joy, however i do the stats the lowest score always has been a minimum 8 for Sue which really winds me and gets me mad and angry 
Oh well here’s hoping for a positive Mri result without secondaries next week.