I understand that it’s the risk based on a sample of women who match the input criteria.
So, you could be in the 95% or the 5% . They don’t know . The podcast made that clear to me .
It’s a stat .
I found it a bit hard to read but it seems my probability of survival goes up from 92.3% to 96. Something per cent and in my case AI only increased my chances by 0.1 - 0.2 % over 15 years .
I’m struggling with the side effects (headaches, fatigue, joint pain etc ) on Letrozole and spoke to my oncologist today. She immediately told me I need to change brands and to speak to my pharmacist. Will give it a go and see if it makes any difference.
Yes mine went from 0.4%, 0.9% and 1.2% in 5, 10 & 15 years with the AI in the old model down to 0.1%, 0.3% and 0.4% in the new but I don’t really know what that means.
Best of luck with the new brand and hope your symptoms ease. x
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Thanks!
It sounds like I’m a fair bit older than you if you’ve been on Tamoxofen. Had I been younger, I’d have felt differently I’m sure. I’ve already done one menopause and don’t want another - I still have a rather ‘broken’ body thermostat from that - easily getting too hot/too cold fairly suddenly. Nothing too drastic though now.
I am also concerned about LONG TERM effects of lack of oestrogen on pelvic floor/bladder etc.
I also think I may have a different attitude to risk than some might have, having lived on a farm with all the risks involved most days?!
I’m trying to keep fit and enjoy being still able to do most things at nearly 70…maybe not so much energy!
Thanks for your best wishes - and your viewpoint. It’s good to be made to think about our decisions and see other points of view. Good luck to you too! 
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Hi everyone
A question to throw out there to you all. Excuse my ignorance, but what is it specifically that people mean when they talk about ‘targeted’ therapy ? Is it one or all of the following …
surgery, radiotherapy, chemotherapy, endocrine/hormone therapy, bisphosphonates ? Or is it something different again?
Thanks x
Dear Nannabee,
So sorry to read you are feeling uncomfortable with your medication, yes please chat with your pharmacies About changing the brand and hopefully this will help you.
Wishing you well, my lovely lady and as you can see, we all love reading your post, so please keep it up. Keep smiling
Biggest hugs Tili 
Hi misty,
Targeted therapy are drugs such as Abemaciclib or the Her 2 drugs. They target the cancer cells. I only really know about Abemaciclib which is a CDK 4/6 inhibitor this drug inhibits the cancer cells from multiplying so I guess as all cells do they naturally die off at some point but they have been unable to produce new cells. Given in the adjuvant setting the plan is any cells that are present in the body will be killed off before they set up home in the bone, liver, lung as metastasis. It’s given to high risk Her2 negative breast cancer patients for 2 years.
Hi Misty, targeted therapies and immunotherapy are different to the generic treatments like chemo. Many have been developed to treat aggressive cancers like HER2+ and some for more advanced Er+ HER2- cancers. As an example, if you follow Dr Liz O’Riordan on Instagram or YouTube she now has monthly Palbociclib injections - and will have them monthly for life - as she has had Er+ BC three times. She still has to take endocrine treatment too.
You can read more about them here.
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Thank you, shade. I am enlightened !
Very helpful. Thanks, Tigress.
Hi Tili, I was about to type “hi Tili my friend” as I feel you and everyone here are my new found friends and I wish for you all an easy and successful journey. The headaches have gone with a different brand, I’d say the fatigue is a bit worse but I have lupus and it doesn’t like the warmer weather (well it is slightly warmer than winter 
)
Thank you for the hugs - I am very much a hugging person so sending big hugs to you too. Stay safe and well my friend xx
Couldn’t think of a nicer friend to have Nannabee, keep safe and well, hopefully your medication will get better or maybe easier.
Hugs again Tili
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Hi Tigress
Hope you’re feeling well?
You put your info into the calculator and it spits out a result based on the data and outcomes of hundreds of women with the same stats as you.
If your % advantage rate from an AI comes out as 1% it doesn’t mean that YOU personally, DEFINITELY have been given that advantage by taking the drug. All it’s telling you is that out of 100 women with your stats, 1 woman will benefit from the drug and 99 will take it with no benefit. Which person in the 100 is the one who would get a recurrence without the drug, no one can tell in advance. You have a 1 in 100 chance of being that one woman who benefits from the drug. On the other hand, you have a 99 out of 100 chance of taking the drug for no benefits.
The 0.1% advantage means 1 woman in 1000 will benefit and 999 won’t.
1 woman will benefit by the drug but it’s wasted on the others. If there are no side effects, that’s fine. It’s when there are side effects that women look harder at their risks.
If I took an AI it would only reduce my recurrence risk from 4% to 2% so it doesn’t eliminate my risk completely anyway. I don’t know whether or not that’s the same for you?
There’s a difference of course, between ‘survival’ rates and ‘recurrence’ rates. (I’ve always understood these predict scores as recurrence figures but I’ll stand corrected if I’m wrong)
Recurrence can be treated again and have it’s own survival rates depending on how/where it comes back.
Does any of that help?
Well, Geeps, it’s certainly helped me get my head around how to interpret an assessment, so many thanks for your post.
If anyone knows for sure whether the risk %age relates to recurrence or survival, I’d be grateful for the confirmation. Perhaps one of the BCNs ?
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# What is Predict?
Predict is an online tool that helps patients and clinicians see how different treatments for early invasive breast cancer might improve survival rates after surgery.
It is endorsed by the American Joint Committee
It looks like the Predict tool refers to survival - I just copied and pasted the above from the website. Not sure about any others.
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You’d think that doctors/oncologists would make sure that everyone knew what the figures they bandy about actually mean!?
There seems to be a lot of confusion all round!
I understood the percentages to be recurrence rates because it was when we were discussing % benefits of radiotherapy and hormone therapy that the oncologist said that if it comes back we tackle it. But the words survival rate come up on websites as much as recurrence! So I could be wrong there.
I do clearly remember him saying when he was explaining benefits of radiotherapy, that I had a 20% risk (of recurrence or survival!) without treatment. That seemed a no-brainer, have radiotherapy! But even so, it did sound different when he pointed out that 80 women out of 100 in my group would therefore be having it for NO benefit! A different perspective.
Anyway as lack of oestrogen has so many accompanying risks, I took a calculated gamble that a 2% advantage with an AI was not worth all those risks. Symptoms sometimes don’t show up immediately and are sometimes accumulative. That was my choice and as I can’t eliminate all risk of recurrence whatever I do, I’ll never know if AIs would have helped me!
I just fear that many women don’t feel they do have any choice - with a stretched NHS we have limited time for discussions with our oncologists - and it’s already clear that we come away NOT being clear!!! How can we make choices when we don’t understand the basic numbers/risks properly?
Maybe a BC nurse here would clarify stuff?
Good luck…
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Thank you for your contribution, Fran.
I wonder why the American Joint Committee would endorse a UK tool. Anyway, I need to do more homework on this myself … or maybe try a fourth oncologist to once again attempt to get some clear straight answers about my particular circumstances and data set…
Thanks again 
Thank you for all this input, Geeps. I absolutely agree with your viewpoint.
You’re SO right when you say the doctors do not spend enough time making sure the patient really understands the implications, risks and benefits of therapies. It is complicated but it’s our health and lives we’re playing roulette with ! 30 - 60 minutes just doesn’t cut it. I’d really need half a day, at least, to explore every avenue, every nuance, to come away feeling I’d made a fully informed decision.
I’ve consulted 3 oncologists but the second two appointments were wasted going over the same superficial headlines, the same stock replies as were covered in the first. Even though I took copious notes and ordered questions with me each time, I was always railroaded off my agenda and then ‘the bell went’. In each meeting, I never got to the point of drilling down into the detail of the biology and pharmacology of it all (although the consultants, I know, considered they’d given their all). I was made to feel, and was reported back to my GP by one of them as, unreasonably demanding. (Pardon me, it’s only my survival we’re discussing here!). But I wasn’t getting any further forward. They were not progressing my understanding. What’s that saying? “Only a fool keeps doing the same thing expecting a different outcome.”
Sorry for banging on but I feel so strongly about this issue.
I am very similar to you in that I decided the small, possible AI benefit did not outweigh the potentially serious harm (never mind the ghastly side effects) of oestrogen suppression and of adding chemicals into the mix, regardless of which drug / brand is used.
And, like you, I’ll never know if that decision ends up costing me a future recurrence/metastasis/my life … or in fact, made no difference to my outcome anyway. There’s no hard proof either way.
I think many cancer patients in general, who are understandably fearful, put their unquestioning faith in professionals, whose job it is to promote therapies that could be beneficial. There are choices, which didn’t even use to exist, or weren’t offered to the patient, but with choice comes more uncertainty and the need for better clarity.
Fingers crossed for us both, then. 
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