On-line prognostic tools depressing

Does anyone know anything about the various on-line prognostic tools? I plugged in my breast cancer specifics onto a few of them and have come up with wildly different estimates and some of them are just frankly depressing. The NPI for example only asks for the number of nodes effected, the grade of the tumor, and size. You get a grade three and according to that one your prognosis goes down astronomically no matter what other factors you put in. Predict is a little bit better due to being able to put in more information. My chances of survival in 5 years was about 18 points higher there and then being able to add in your treatment would up it from that. NPI didn’t have the option of putting in your treatment. It just pretty much kills you off no matter what. Of course a couple of other tools have different things also. Oncotype score was much gentler to me but it automatically added in that I would take endocrine therapy for 5 years and then my oncologist told me if I added chemo and endocrine therapy for even five more years that would also lower my recurrence score. Anyway I felt like I had a good prognosis with that but after looking at NPI, it’s like I should just throw in the towel. 

Hi Kay

My first reaction was incredulity - why would anyone search in this way. Then I remembered how niggling that question was for me, though generally I blocked it out. The fact is, these are statistical models and NPI is very out of date. I was told it’s only mainly used by breast surgeons to pass data onto oncologists, after which it’s irrelevant.

i only came across mine after I’d finished treatment (preferring ignorance throughout) and decided to ask my BCN to explain all my data. When we’d finished, I was almost overwhelmed at what I’d escaped. That night, I couldn’t sleep, something was niggling so I thought back and realised the nurse had omitted to explain one bit of data. An NPI score. So, for the only time, I googled. My NPI score told me my prognosis was POOR. Just one word. I panicked so I emailed the nurse who wrote a reply that stuck with me (apart from the gentle reprimand and advice always to ask an expert, not a search engine). She said that I faced a choice. There are those who become locked in a world where they hold onto their data in the fear it will come back. There are others who move forward optimistically - their cancer has been cured. Then there are those who have a foot in each camp and jump from one to the other at times. But, she said, the important thing was to enjoy camping ie get on with your life because no one can predict if you are going to be the unlucky one.

We are not statistics, we are human beings and no amount of statistical tools can answer that question - will it come back? You may get a score that says you have a 98% chance of no recurrence, but you might easily be one of the unlucky 2%. And vice versa. Imagine knowing you have only a 2% chance of avoiding a recurrence. You could then spend a life in constant fear of what actually may never happen.

So really it’s time to make a choice for yourself The fact is, you cannot manipulate statistics. They are what they are (lies, lies and damned lies, as Henry Ford said). If you go searching and don’t like what you find, it’s tough. If you are asking these tools to help you decide on your treatment plan, remember, if it says chemo will only make a 2% difference, you have to remember how they’ve arrived at that 2%. For every patient for whom it made no difference, there will be someone with a much higher chance of full recovery. Which one will you be?

Sorry I’m rattling on but this is one of my bugbears - why patients feel outdated statistics they find on Google will know better than their oncologist who has all the data to hand and works with a multi-discipline team to arrive at the right treatment plan for each patient’s unique cancer. I’m sorry too if it sounds patronising - you may well know how statistics are used, your oncologist may well have told you to go away and look at the data, who knows? But statistical tools are not the way to make these decisions. Nor are they a guarantee of the future. I hope you arrive at the right decision for you but remember, you aren’t a statistic. Also, remember that a Stage 4 diagnosis is not what it once was - hopeless. There has been huge progress so it’s more like a condition one learns to manage and live around - so we rarely throw in the towel. I wish you well, whatever you decide.

Jan x

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