hi,
given my surgeons failure to give my my recurrence stats I thought i would try and work them out myself. Does anyone know of a good online calculator, preferably one where you can enter your age, and preferably one that is based on statistics from recent years.
I used the online adjuvent calendar you have to register and say you are in the medical proffesion but it just lets you on it after that xx
Sorry if spelling rubbish just had chemo and head a bit fuzzy x
Predict (NHS data based tool) or Lifemath (Breast Cancer Tool)
Nottingham Prognosis Indicator is simple to use though maybe a little outdated now.
oh ,can some one please help with the nottingham score, I was given a score of 4.5 at diagnosis, I have just scared myself witless, does this men I only have 4.5 years of life to live. i had grade 2 stage 2 with one lymph node positive, I had reconn and chemo and now on aromasin…
going for a glass of red now x
I’m only aware of NPI and adjuvant online. I think adjuvant online is a bit out of date. I’m HER2 positive and my Onc warned me not to use adjuvant online as it has not been updated with stats relating to herceptin as a treatment. I have tried searching for a calculator for her2 positive with herceptin without luck. Would be intersted to know if any HER2 ladies have been given 5/10 years stats.
No it certainly doesnt mean that-without looking I cant remember how it works but I think you can display the info in different ways.I’ll have a look and get back to you if I can.
Vx
I think statistics are a bit of guess work in some ways. Because nobody knows which line they are on say 70% or 30%. I just put my head in the sand and think of the ladies that have defied the statistics and are alive and well.
You would have to look up a lot of robust research papers on the exact treatment you have had. Even then which side of the line are youo on. It is so difficult. Neoadjuvant on line does not include her pos . You could ring the Helpline and see if they could help you.
Its a horrible thing to have that grotty thing sitting on our shoulders forever.
Cackles
Ok on NPI 3.4 to 5.4 means a 70% chance of surviving for over 5 years 
I think statistics are a bit of guess work in some ways. Nobody can, really tell you accurately only looking at broad sections having similar treatment. Then nobody knows which line they are on say 70%ok or 30%not. I just put my head in the sand and think of the ladies that have defied the statistics and are alive and well.
You would have to look up a lot of robust research papers on the exact treatment you have had. Even then which side of the line are you on. It is so difficult. Neoadjuvant on line does not include her pos . You could ring the Helpline and see if they could help you.
Its a horrible thing to have that grotty breast cancer thing sitting on our shoulders forever.
Cackles
if you think about it they cant have stats for the newest treatments yet so most must be about 6 to 10 years out of date.They dont yet know the success rates for taxotere in primaries for example and info on triple neg survival rates seems to change almost weekly.
Really for each of us the survival rate is either 0 or 100%-no one can know for sure.
Vx
I have just looked at all three sites, non of them give an option for radiotherapy, do they all assume you have had it?? Very shocked to see how little extra protection the tomaxifen is giving me. But as I do not have side effects and its doing my bones good and (fingers crossed) i might even be loosing weight and my hair is starting to be in wonderful condition I dont mind staying on it.
Right at the start of this palaver, my consultant said “I don’t do statistics” and I think he was wise.
All statistics are, inevitably, out of date - the 10 year survival stats, say, have to be people who were treated ten years or more before the mathemetician started collecting them… it sounds so obvious when someone tells you, but when you look at the numbers your mind can go aaargh! Current treatment has moved on since those women were treated.
Unless you get very precise stats, as some others have noted, you can’t be sure if they apply for you. As OAL has noted, the online tools don’t include radiotherapy. They also all assume adjuvant (post surgery) chemo whereas mine was neoadjuvant (pre-surgery)- because this is less common there is no easy access data on its efficacy (though my surgeon reckoned it was just as good and that in time it would probably be shown to be more advantageous).
Also, there are soooo many other factors that affect survival - it is a fact, though one I find utterly distateful, that I have a higher chance of survival than a woman with identical diagnosis living in East rather than West Glasgow… underlying health, wealth, deprivation, blah de blah, it all makes a difference which no computer model can ever reflect accurately.
As Cackles says, and I agree, even if your stats come out unfavourable, who’s to say you’re not the person in the ‘good’ number? I trust that my consultants made the best call they could, and I choose life, without getting too uptight about how long it might be.
(btw I used to work in probablistic risk analysis so I’m suspicious of any numbers that quote results inlcuding decimal places!!)
Trying to get statistics is a pain. They do not cover everything. I know that the main breast cancer International conferance is being held either this or next week in San Antonio . Good things always come out of this. It always does and statistics will have changed to take on modern treatments . You could google that and see what is being discussed.
As a person with a 4+ cm multifocal area of grade 3 ductal cancer and the dreaded vascular involvement I am scared of looking to much. I know the answers , I used to give them to others, however how would jump out of an aeroplane with a 20% chance of the parashute opening. I know I am in that cohort but just peek when I am by myself.
I try to stay upbeat because things do change and some people defy all odds. That does not stop me being frightend re the 1st taxane today ugh. I have been posting all nigh from lack of sleep due to steroids,
Yuo might like to do a Ask the Nurse email letter. They will go into the latest results etc and if it after San antonio it will be hot off the press.
lovely to read your so well infromed answers.
Cackles
Yes, they all assume radiotherapy if you’ve had lumpectomy.
As V says, by their very nature the statistics have to lag a bit because you can’t have 10 year statistics for new treatments. For me, the usefulness of them is in weighing up what benefit a particular treatment add against the risks it poses. So, for example, for me the risks of chemo outweighed the potential benefits, whereas the benefits of tamoxifen and Aromasin outweighed the risks.
I lost weight on tamoxifen, although now that I’ve shifted to Aromasin I’ve had to be careful that I’m not putting it all back on.
Eliza xx
How much weight did you loose? where you normal weight when you started?
I think now that i have looked at my figures, which are quite simple because its 2 /3 years tam followed by 2/3 of some other drug, then the recurance rate is quite low, that is assuming i dont die of other causes, which is frighteningly high. so if recent improvements in treatment improve those stats then it is only good news.
Must be different for people with more advanced cancers.
Yes it is :o(
Was going to put something here, now have realised best not to!
As others have said, the biggest problem with all these statistical tools is that they’re bound to be always out of date. Adjuvant Online doesn’t make any allowance for Zoladex or Tamoxifen + Zoladex, so of limited use to me.
Thanks for all your knowledable comments, you are spot on, Think I will stop lookin at stats , and as you say choose life, as I think it was Sheila Hancock who said. " I am hear today"…
some days it gets a bit hard to keep positive doesnt it.
keep well all x