I made a similar choice for Letrozole. The 1% improvement in outcomes wasn’t worth 5 years of debilitating side effects. Radiotherapy had similar benefits for a lot less daily impact.
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Same here lovie. Sounds like we have similar outcomes and mindset 
I keep going back to that first appointment with my onc when she quite brusquely said “if you were my patient from day one, I would have put you on letrozole for 10 years!” When I asked her why, the response was “because I always do” … 
To me, it’s just all a bit too easy to give every one of us these meds, pat us on the head, and send us out into the world to just “suck it up” and get on with it.
I don’t think I need to take them, destroy my quality of life, on such a tiny advantage. It’s as simple as that.
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In an effort to keep us alive they overlook quality of life and us actually living our lives.
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Indeed. That’s not to say that I’m anti meds. I’m not - at all. If I could take a pill a day that guaranteed that I wouldn’t get BC again, one that didn’t have such a negative impact on my overall long term health and my ability to function, trust me, I’d take it in a heartbeat. I could put up with hot flushes or minimal effects, but I can’t cease to function- I have a life!
I hope they do look at these meds and improve them for all of us. 
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There are rumours of better ones coming. If they emerge in my 5 year window I’ll be calling my oncologist.
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You & me both xx
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Hi, also predict is about survival and not recurrence. So you could live for 10 years but 5 of those years could have been with a metastatic recurrence.
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Hey @bluetit11
Yes it seems to be the way and sadly a lot of women are so scared by the C word that they’re made to think you should throw everything at it no matter the side effects or tiny benefits.
Crystal ball needed i think 
!
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Thanks @misswoof-88 
Sounds like you’re making good balanced decisions 
I remember the Hannah Fry programme about cancer where she was rushed and made to feel like she’d be foolish not to let them take all her lymph nodes - and then said that when she looked at the data afterwards she probably would have made different decisions.
Humans are generally pretty bad at risk assessment 
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Yes, that’s quite right. Thank you for pointing that out. However, given that all of us with primary breast cancer (which is the focus of predict) will have had treatment/surgery to remove/ and ongoing monitoring for at least five years; that percentage survival would seem to suggest that it’s not “living with metastasis”
Infact, if you look at the percentage deaths from other illnesses, and not bc, of women in their 50’s/60’s then, certainly in my case, there’s a far higher risk of heart decease and dementia. Of course this is all about statistics and probability, so there is always going to be limitations with these platforms. But, never the less, for most of us with estrogen receptive primary breast cancer- the chances are overwhelming in your favour to live a long happy life once you get it cut out and get your zaps to mop up any cells lingering in the area. AI’s don’t necessarily add much to that when weighted against side effects & potential long term damage.
We are all different of course. And if I was, say… in my 30’s with young kids - I’d throw everything but the kitchen sink at it. And, indeed, at my age - I still tried for several months… but that 1% advantage over five years is still a factor.
Weather you say survival rate or recurrence … it’s a tiny advantage over a long time, for me.
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yes indeed. And I think back to how I felt when I was first diagnosed, and the overwhelming feeling was one of fear. Fear of death from cancer. So, in those early moments you just get swept along with consultants and nurses telling you what’s going to happen and you just go along with it.
It took my BCN saying to me directly “hay, this isn’t going to kill you- it’s treatable” for me to take a breath and start absorbing more information and, I guess, engaging with the process.
I can only tell people my experience. I wouldn’t dream of telling someone else what to do, but we need to hear this stuff- all of us.
I get sick of seeing cancer portrayed on tv dramas as a terminal illness all the time. Certainly in years gone by, it woukd have been a different outcome for some of us, but these days, it’s a fact that most of us will be able to get on with life and a lot of us will not have a recurrence, or even if we do, we’ll go through surgery etc again and crack on.
At this juncture, given what I’ve already experienced, what I’ve researched and what I have heard anecdotally, I’m much less frightened of MY future and cancer risk. I’m living well, doing what I can to mitigate and just enjoying life. Keeping fit.
As to the rest, well… “let the chips fall where they may” as the saying goes. I refuse to live in fear.
Xx
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My mother in law did all the chemo and radiation and was eventually given the all clear…but she felt completely robbed of her vitality, and was constantly scared of not being able to afford future treatment (she lived in Florida) and ended up taking her own life 
So you definitely do have to weigh up all the aspects of treatment and not just focus on the cancer
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I’m sorry to hear that @wizzer
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I’m very sorry, and saddened to hear that. That’s a terrible loss. And I’m sure that certainly plays into your feelings for your own ongoing treatments - understandably,
My mum battled through most of her life with illness and died quite young (the same age I am now actually). In the late 60’s early 70’s she had massive doses of radiotherapy and chemotherapy for the lymphoma. She ended up with steel pins in her spine because her body was so ravaged by both the cancer and the available treatments back then.
She was very lucky to survive back then. But the treatments did lasting damage. She needed heart surgery in her early 40’s and her cardiologist said that was likely related to damage from her earlier treatments. So, it weighs on my mind too. In fairness to her doctors back then, they absolutely did their best for her, at a time when little was known about Hodgkin’s lymphoma. And they no doubt saved her life at a time when I was still a very young child and that’s what was paramount to her- to be here, for her kids. But the collateral damage (a good description by another on here) was ultimately what we all had to live with. She was never the same… subsequent endometrial cancer (connected to cancer meds) thyroid issues/ and a damaged heart, had implications for us growing up. And, in hindsight, I think she probably had a lifelong battle with depression, which may/may not have been some of the medications she took over the years.
These days, Hodgkin’s is much better understood and treatments are far less brutal and more successful (my mum was initially given a terminal diagnosis and weeks - not months- to live).
I often think about my mum’s fight to live and that must have taken incredible strength, just to get through each day, on the treatment regimen she was on back then. I remember waving to her (in her white hospital gown) from behind a pane of glass , as a little girl. I wasn’t allowed near her because of the high doses of radiation.
So, things do change, treatments improve. Outcomes get better. But, for me, well, in my situation I am not willing to wreck my health either, on a maybe. It’s a small calculated risk.
And it MY choice. No one else’s.
Given the above, it’s to be expected that i are mindful of what comes after, as are you -& with very good reason.
Xx
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Hi, yes it isn’t always straightforward and what is right for one of us isn’t necessarily the right choice for another. We all have to research the available information and make our own decisions.
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Couldn’t agree more @shade
I do a lot of strength training as part of my recovery and my PT is a fabulous lady that lives with metastasic BC. She’s an athlete and still runs marathons and lives life to the full. (like a female Chris Hoy). She was diagnosed after it had already travelled and the only symptom she had was a sore shoulder Subsequently, she is 3 years post diagnosis and still managing to control it, with a combination of meds and holistic ways of living. Shes active, strong and enjoying life.
Yes, she’s had some dark days (who wouldn’t) but she refuses to give up and, for the most part, she is just living life and making the most of it, being as normal as possible.
The hardest part of all of this, for her, is coping with the side effects of all the meds she has to take to try and keep ahead of her cancer. So far, so good, but she often feels like it’s too much to cope with.
The meds are cause her to have bone pain, spinal collapse (she has lost inches in height) and frequently gets fluid cysts in her legs, feet and other joints. Often requiring needles to drain fluid.
She has a constant runny nose and all sorts of other estrogen deprivation symptoms that there is minimal help for. She can’t anything that gives her cancer an upper hand…
So, as much as I am in awe of her ability to keep up her fight, I also feel desperately sad for her that the meds make her fight that much harder.
It’s for ladies like her that these meds need to be improved… she’s living with this ‘condition’ (as she prefers to call it) but she’s have a much better quality of life if the side effects were not so bloody brutal.
So, for all of us … let’s pray that the new meds coming through have addressed some of the worst side effects and we can all benefit from what they do, rather than having to walk away, or just suffering out of necessity.
One lives in hope 
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Hi everyone,
Thank you to everyone for keeping this discussion so civil, understanding, and informative.
Just to weigh in as there has been some discussion of the Predict tool.
Predict uses individual information about the person and their breast cancer alongside data from large research studies. However, this version of Predict doesn’t include variables such as radiotherapy treatment and the impact these may have on prognosis. There is a newer version of Predict (version 3), which does include other factors, however this newer tool hasn’t been externally validated yet through large studies, and the UK Breast Cancer Group (UKBCG) is currently not endorsing this version it until it has been validated against international data.
Hopefully you find this information useful when it comes to making these extremely important decisions regarding treatment.
All the best,
Alice
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Thanks for the clarification Alice 
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Thanks Alice. 