I know there’s no definitive answer to this but any thoughts or knowledge you can share would be much appreciated.
I’m 65, grade 2, lobular, ER +ve, Her2-ve, mastectomy a few months back, lymph node clear.
No chemo or rads, but am on Letrozole for 5 years.
My NPI score is 3.4 so right on the cusp of Good/ Moderate
So that places me on the edge of 85% (good) and 70% (moderate) for 5 years survival.
I’d have liked to be firmly in the Good ! but then I’d have liked not to have had cancer
Then, my Predict (V3) model score gives me 97% rate for 5 years (and for note, the rates over 10, 15 years are better with Letrozole than without).
Obviously I like Predict better and am thinking I’ll just delete NPI from my webpage “favourites” .
My NHS team use NPI (shame) in my medical notes but then also told me to have a look at Predict as a useful indicator.
It’s also a bit frustrating that the different kinds of cancers (as I said, mine’s lobular) aren’t accounted for as they do behave differently.
I know they’re just tools and I could get knocked down by a bus tomorrow but I’m wondering why the big difference ? how two recommended tools can come up with such different answers . Anyone got any ideas ?
And sending all good wishes to everyone for the best possible outcomes,
Bee x
The only thing I can offer is that the Predict V3 data is based on much more recent data which itself is based on better treatment regimes. I don’t know much about NPI and only became aware of it because someone mentioned it on here a few months ago. I went back to look at my post surgery histology report and saw they’d put an NPI score on there (2.3) and I still have no idea what it’s based on and what it really means. I thought that was the score I’d been given assuming I’d take the endocrine treatment for 5 years. Predict seems to be the tool which gives a comparison between taking a particular treatment and not. I guess it’s all a bit of a wet finger in the air. If I were you, I’d take the Predict V3 results as your guide as it is based on more recent data.
I was also told to ignore the new PREDICT . Liz o’ Riordan says the same . The medical oncologist used NPI to calculate the chemo benefit but the radio oncologist used PREDICT to calculate AI benefit
However , I had an oncotype ( insurance funded ), so I know my personal risk …
Thank you ladies, really interesting to hear the different information we get and the importance, or not, it is given.
Very pleased to hear Tigress you fall into the Excellent group for NPI score, even though you don’t know it ! You’re barely on the chart
My BC team told me the NPI score is the “recognised” decision making one for medics and although I was told about the others like Predict I wasn’t given any insight into what/how they differentiate and so it’s very helpful to hear your experiences.
I also wasn’t given a cancer “Stage” eg Stage 1, 1A, Stage 2, 2A, and so on as defined on many of the BC info sites, including this excellent Breast Cancer Now site. I asked about it and my breast surgeon said they don’t stage it but look at NPI and diagnostics to define what/if other treatment is needed. Which is fine as far as it goes but I’ve been told that when it comes to travel insurance I may need to provide a “Stage” so will need to look into that.
I’ve not seen an oncologist, yet, my breast surgeon reassured me an onco was part of the multi disciplinary team reviewing and deciding on my treatment, but as no chemo or rads deemed necessary it was simply here’s the Letrozole, off you tootle.
I’m not dissatisfied with any of my treatment, I have though found in this last month or so, since all the whirlwind of activity around the operation and diagnosis has died down that I’ve got a few follow up questions and queries I’d like to resolve for myself. So, I’m considering seeing an onco privately as I’ve checked with my BC nurse and that option isn’t available to me back in the NHS.
I have to say I personally don’t have much faith in the NPI score. Mine came out at 4.8 and was detailed in the sign off letter from the surgeon. This score had never been discussed with me and I had to Google it when I received the letter.
I found this only gave me a moderate prognosis which was so distressing as they had been optimistic all the way through. The NHS as a result were automatically going to give me chemotherapy.
Thankfully, I too had the oncotype test, privately funded and my score was 18. This indicated I would not benefit from chemo and in fact chemo would have been detrimental to me.
I am just thankful I was able to proceed differently to the course I would have been on with the NHS. I believe treatment is very much based on averages and tests offered or not accordingly.
If you want a stage score - and I can’t think why they would withhold this especially if you explain you need it for travel insurance and yes I think I was asked about my stage then I would suggest asking for a copy of your pathology report but make sure that your BCN goes through it with you if you don’t understand it as it’s easy to misinterpret things. If you have a Holistic Needs Assessment you could bring it up there otherwise just ask your BCN . You are entitled to this information .
I don’t think I had an NPI score done just a Predict 2 - personally having done my stats on Predict 3 I think it sounds too good to be true . Xx
I read the piece in the publication Nature when V3 first came out (not that I could understand all the statistical stuff) but it made the point that v2 was based on less data which only went up to 2003 whereas V3 has more data which goes up to 2017. Intuitively one would think that the later version is an improvement. I wonder if there is some concern over everyone thinking “oh my results have miraculously changed for the better” and giving up their treatments. Whatever the reason, it would be good to understand the reason V3 has not been adopted - I’m a lawyer I like to know detail and causal links.
From my personal perspective, I don’t hang a lot of significance on any of these tools as they are generic and we’re each individual. My scores on NPI and both versions of Predict were good but I agreed to rads and still take Letrozole. Belt and braces.
Here’s the article if anyone has the inclination to tackle it.
I think you may be right in that it makes the prognosis look so good that people might be tempted not have radio or endocrine therapies - we could end up going backwards and we need to know why it’s not been adopted .
I think the same. Oncologists want us to take AIs, so the survival rates hold up .
The trouble is , nobody knows who will benefit from AIs . You can take them and still get a recurrence.
They have to treat 100 patients to get a small % benefit .
So, I might take the Anastrazole, never have a recurrence but end up with osteoporosis. It’s a personal decision.
I had an oncotype .
Also, the predict and NPI don’t differentiate between ductal and lobular .
Reading the BCN nurses response to a query on V3, it seems the UK Breast Cancer Group, which is a forum for clinical and medical oncologists, has asked for the results in V3 to be validated against international data before reconsidering whether to endorse it or not. As it goes to the heart of what they do, that is formulating a prognosis and treating to that prognosis, it is only right that they require as much empirical proof as possible that the tool is viable. Watch this space I guess.
Jumping in…i was told to use version 2 of Predict. My NPI is 4.34, and on Predict it is a 6% benefit from chemo. On v.3 my benefit is much less. I have an oncology appointment in 2 weeks. I will ask. I am expecting chemo is on the table. X
I skimmed the article in your link and if I’ve read it correctly endocrine therapy wasn’t mentioned in relation to the change in survival rates only chemo and radio ?
Yes I think that’s right but then I’m not aware of there being much change in endocrine treatment over the past 20 years. V3 also seems to have much more data on Er- cases for whom endocrine treatment is irrelevant.
The interesting thing to me is that the new model has been adjusted to incorporate not only the benefits of both rads and chemo but also more detail on the risks. So the calculation of “deaths not related to breast cancer” now includes deaths caused by the impact of those treatments - rather like deaths caused by the long term impact of endocrine treatment such as heart failure and osteoporosis. The point of Predict is determine the risk/benefit of each of the treatment strands for an individual so the inclusion of more sophisticated risk analysis has to be good. I’m sure it is a long way from being foolproof which will be to do with the quality of the data as well as the refinement of their algorithms. It will be interesting to see if the validation against international data will see it being adopted by the NHS, I expect it will be lengthy process.
Personally, I’m not relying on any score from any prediction tool. I was stage 1 grade 1 but am well aware that even these can have spread (Liz O’Riordan put me straight on that!) so whilst I tolerate the regime I’ve been put on, I will stick to it whatever the scores may say.
I looked on predict to see the benefit of tamoxifen as I’ve learnt how shit the side-effects can be. Only a 1% improvement after 10 years on survival. Yes I’d contemplate risks against benefit, but its a very basic and incomplete tool. Its the reoccurrence rate that would be more useful as sure, people are largely living 10 years, but that could be with local recurrence or even with mets, because treatments are getting better at prolonging life all the time. Nobody would want to risk that either.
Even Predict v2 is based on general stats. And no distinction between ductal and lobular.
Liz O Riordan also said it’s 50/50 whether it comes back . It either does or it doesn’t , which is a fair point .
None of is really know .
We can take the endocrine and it doesn’t work , we can take it and it prevents a recurrence but many of us will take it without a recurrence that would never have had one . But we tolerate the side effects .
Oncologists deal with stats. Mine sat in front of me and typed my figures into Predict to decide my treatment !
and am thinking I’ll just delete NPI from my webpage “favourites” 
.
