I get that they want to defeat the cancer but they don’t look at the collateral damage. The point of us recovering from cancer is so that we can live our lives not just be alive.
There was no mention of help for the side effects either. I had many megawatt hot flushes a day in cool breathable clothing. A fan wasn’t going to fix that and I’d have been holding it half the day! No help for my mental health SE either.
Collateral damage is a very good description. And, yes, I agree with you. I completely understand why these meds are effective in giving us the best chance at no recurrence. But they are brutal. I took hrt to protect myself long term, as well as mitigate the symptoms. I had a pretty rough time during peri and the hrt (once I got onto bio identical that suited me) really helped.
Our BC specialists have a narrow remit. Try to keep us cancer free for 5/10yrs.
Our remit is to do what we can to keep ourselves as fit and strong for as long as we possibly can and ward off heart disease/dementia/osteoporosis etc, as well as dealing with our individual cancer risks. We are all different, and if my stats were not as good as they are, I would be having a very different conversation. But- luckily- I have the luxury of being to step away.
That said, if I had started anastrozole and been able to cope with minimal side effects, I would keep taking it and monitoring my bp/cholesterol etc. I might have thought it was worth sticking with it if I could actually function! 
These aren’t easy decisions. I pray that these drugs improve in the not too distant future for all the ladies coming up behind us… (& the few men of course).
All the best xx
I agree with everyone above! I managed Anastrazole for 15 months but it was taking over my life - the joint pain, brain fog etc., I felt 83 rather than 63
. Fortunately, my BS was happy for me to take a break from it and after six weeks I was almost back to ‘normal’ 
. My risk of recurrence is 2% higher if I don’t take AIs and I can live with that so I’m hoping my BS agrees when I go back for a review next month
Hi there,
I certainly understand you feeling 83 not 63. That’s how I felt on it… I was even shuffling around hunched over like an old crone! I’d catch my reflection in the glass, from time to time, and it was, in equal measure, shocking and depressing. The look of concern on my hb face was also a factor in my decision to step away from it.
I felt like a was disappearing down a dark hole… and I didn’t want that for him either.
But, here I am: off AI’s and feeling strong and happy. I’m just eternally grateful that my stats allow for it.
If I do get a recurrence, at least I’ll be strong enough to cope with what’s ahead.
I wish you well hon. And good luck for you BS next month (I’ve got mine early Aug but mammogram next week 
)
Fingers crossed for you too
My oncologist recommended oxybutin (?) for hot flushes. I’m trying to manage without it. I’ve got fans everywhere I go and try to have cotton/natural fabrics- especially in bed! As well as Letrozole, I also take ribociclib - the side effects of which I struggle more with than Letrozole e.g fatigue, worries over immunity etc. But hey, I’m working round it. Not easy-especially the fatigue but ‘I’m here’ - day by day…be kind to yourselves xx
I’ve started oxybutinin after trying pregabalin for months & fingers crossed it’s mainly dealt with them bar a couple of shaky moments each day but a huge improvement.
I find this forum so very helpful!
I have been on Letrozole for 2 and a half years, and took it prior to my surgery and the tumour shrank in 5 weeks from 21mm to 14mm ensuring that the surgery was minimally invasive. It looks like a gun shot wound in my booby!! After saying that the long term side effects of Letrozole have been horrendous. I have hot flushes, brain fog, fatigue, aching bones you wouldn’t believe and total vaginal dryness that is sore!! That’s not including the mood swings and inevitable depression of feeling 20 years older than my 66 years!! I am a positive person normally but I have now got to the end of my tether. I phoned my Breast Cancer Nurse and discussed it with her and she was so understanding! She suggested I take a break and maybe look at other medications like Tamoxifen or Exemestane but like some of you I am thinking out of the frying pan and into the fire with their side effects!! I phoned back and asked what my recurrence rate is and have not had a reply yet, the other BCN I spoke to said she would speak to the oncologist and get back to me. She tried to get me to agree to try one of the other and I am adamant that I really would prefer to know the recurrence rate first before making any decisions. I am now 8 weeks after coming off the Letrozole and I feel absolutely amazingly back to my old self - walking the dogs for miles, going to the gym, doing the garden and generally feeling happy with life!!! What a change - I am seriously hoping that I can stay off the tablets totally. I appreciate what they have sone for me but now if the time to start living again!!
Good luck to you all - I know we are all different but it is so good to know that I am not just a whinging moaner and hopefully we can all get things looked at for the future!
Go see your GP as there are moisturisers they can prescribe which really help. You don’t have to feel sore.
I have been prescribed these but don’t want 5 years of poor quality of life. How do you work out what benefit they be give to you for taking them? As you say when you ask consultants they don’t want to talk about them. They know I don’t want to take them. As I have complication with neurosis I have said I mentally can’t deal with all the side effects when I am struggling to deal with what is happening to be now. Can you guide me how I check please? Thanks Pam x
Take a look at the Predict tool here Predict Breast
Put your particular details in. It gives a score for surgery only. Then select hormone therapy to see how much it increases.
Thank you Bluetit11, Like all you ladies we have been through so much don’t want the rest of my life to be crap.
At the moment like I said I have not started them as don’t want all the side effects x
I couldn’t tolerate them but many here do. I’d advise trying them and seeing what happens.
I wish I had the safety next but depression and not being able to use my hands means no.
I have been rushed into everything else and finding it hard not been in control. I was expecting to be back exercising 6 weeks post bilateral mastectomy and tissue expanders ( I am currently, 3 1/2 weeks post op) and I would have been if not for this. I am so active normally I don’t want the physical or mental side effects of the pills. Finding it hard not having HRT. If they only improve my chances by 1% I would rather take the risk of not taking them and get back to normal as soon as my dead skin heals. Thanks for your help x
Hi there, adding to what has been said above, definitely run your own pathology details through the predict platform (link 
above). It’s very straightforward and will let you look at what your particular tumour type recurrence risk is over 5/10yrs. It allows you to look at the difference between surgery/surgery and radiotherapy/ and AI’s over 5/10yrs.
I’m my case my stats for recurrence were already low. I gained the most advantage from surgery with radiotherapy. And 5yrs on AI’s only gave me a 1% advantage over and above that.
It really can help to know your own risk as that may determine how you feel about trying AI’s. You should have been given a copy of your pathology results at your follow up after surgery. If they didn’t, get hold of your BCN or your onc and ask for it.
As we’ve all said, there really is no way to know how you’ll get on with AIs except by trying. We are all different, and what may not suit one, will suit someone else…
From reading posts on here over the last year, I’ve definitely seen a correlation between those women who struggle on them, and a shared history of issues with any systemic medication that effects hormones (ie the pill/mini pill etc). All the women in my family have a similar history when it comes to hormones and we’ve all had a tough time with heavy periods gynae probs. So, perhaps that’s pertinent- who knows??
But for everyone of us that has a bad reaction, I expect there are many more who don’t- or for whom the SE are tolerable enough to continue.
Bottom line: we have all been through so much already… so the desire to get our lives back is strong. And anything that gets in the way, is not going to be acceptable long term unless you know exactly what the benefit of it is to your particular situation.
I strongly urge you to find out. Your onc can tell you/run your details as well. Mine did. But I’ve run my pathology results through it myself too. It’s fairly straightforward. And it’s a useful indicator that may help to put your mind at ease- either way.
These arent simple decisions, for any of us. So we all completely understand your concerns, especially around moods/mental health… there is nowhere near enough emphasis on these particular SE. That’s why these forums are so important. Thank you for sharing and I hope this thread has been of use to you in your own journey to get your life back. Stay well 
Interestingly my onco tells me AIs give me a 3% improvement in my Predict score, but when I do it myself (using the latest Predict) it comes out at 2%. I got massive benefit from surgery, I’ve also had chemo and am still completing 9 rounds of herceptin. I am very unhappy about taking AIs but I’m being pressured to do so. I’ve decided to spend the money I would have spent on holidays but couldn’t over the last year (due to surgery and treatment) on a private holistic consultant and a bunch of detailed tests to try to understand what’s going on in my body and what I can change in my lifestyle to minimise recurrence. Also I paid for a private bone scan and was startled to find age 57 I’ve got quite bad osteopenia and even some osteoporosis in my spine. I do loads of weight bearing exercise so this was a shock.
I’m just at the start of the holistic journey but will share here what I find out in due course. And what my decision is re AIs. At this point I’m saying no (kicking it into the long grass) till I’ve done further work with my private onco.
Even the holistic onco says only I can make the decision on AIs. Which is fair enough. It’s such an individual choice. Whatever one decides, you have to sit easy with the decision and not beat yourself up if the worst happens….which is a big ask obviously!
Hi again @sam1204 . It’s interesting you say that about running your own predict scores. I found the same thing. My onc ran it through and it came out at 2/3% over five years, which she ‘bullishly’ labled a “modest but not insignificant “ advantage. But when I ran the same info through it , it came out at 1% on the new version of it. I asked her about the discrepancy and she said the new platform was more accurate because you could add more details 
Surely, if that was the case, and it easily accessible to everyone, why aren’t consultants using the new platform for these appointments? I’ll let you draw your own conclusions to that one !
But, ultimately is IS our choice. I just wish it was a more level playing field in terms of information. It feels a bit like walking blindfolded towards a minefield.
I believe I have made the right decision for me. I’m not going to take them because I can’t function on them. It’s that simple And unless, or until, they start producing these AI meds, that dont have the same SE profile, I’m not going to rethink it- unless a recurrence makes it necessary; in which case, I’ll probably head for mastectomy and see what’s available then. It’s strange, but I don’t find the prospect of that nearly as scary as I thought now. BC is, for the vast majority of us, not fatal. So, I choose to not let it define who I am. I can control how I live and I’d rather focus on being happy & living well.
The odds are in my favour and I’m doing everything I can do to help that. So, I’d be very interested to know how you get on with your holistic approach too Sam.
Good luck lovie…
@misswoof-88 I’mstill waiting my my mastectomy pathology report so havent had to make any difficult decisions yet…but I am amazed at how low the benefits are of some of the treatments offered - particularly when most of them have horrible and sometimes long term side effects
Do these Predict scores take that into account at all? As in how much your health might deteriorate because the symptoms stop you from eating and exercising as well, for example?
Is it easy to find and work out the new predict platform?
Wishing you all the best with your decisions 
Unfortunately no they don’t @wizzer . I asked my onc the same question about data in long term effects and the response I got was pretty vague. It’s clear that there are massive gaps in data/research on this issue, which is why I am more comfortable trusting in my own judgment in this.
I have a family history of heart disease , osteoporosis, autoimmunity and various cancers other than BC (to my knowledge, I’m the only one with this particular critter). My mother had endometrial cancer (probably secondary) following Hodgkin lymphoma in her 20’s, so with my own gynae history not being great either, we have ruled out tamoxifen. That was actually the oncologist taking that off the table. She said it was too risky.
So, for me, I felt I was best placed to decide this. And, infact, in my case I think I probably have a better idea of what my own body can handle. And, given my own genetics, it’s a balancing act as to what’s more likely to get me first 
I’ve always felt a bit like a ticking time bomb, truth be told. So, I’m always vigilant. And I think that’s so important for us all. You know your own body.
As to the predict program: it’s very easy to do. Get it up and just follow the instructions. You’ll be asked to put in your tumour size etc and a few other details from your pathology etc and then just hit ‘enter’ and it will bring up your recurrence risk, for surgery alone / surgery & radiotherapy/chemo/and AI’s (adjuvant therapies). You can play around with it and use the toggles to look at diffrent options (including over 5 or 10/15yrs) as well. It’s an interesting tool.
The fact is, for most of us with oestrogen positive bc, the prognosis is pretty good to outstanding frankly. But, it comes down to your individual risk and that is very individual to you. How big the tumour was, how aggressive it was, HER2 status, etc. they all play a part in determining your recurrence risk, along with your genes too, so it’s worth looking at it.
We need all the info we can get in order to make the best choices.
I think the risk, for me, of heart disease and other autoimmune issues, on AI’s is an other important factor in my decision. But I do wish there was more clear evidence of other risks out there…
I while ago, on one of my late night insomnia episodes I went on the hunt for stuff like this and found a resent American study/paper that did touch on the risks of AI’s long term. And whilst it did note the distinct lack of research on this subject , it did reference the possible over prescribing of both chemo and AI’s. It’s definitely something that needs more research, but that doesn’t help those of us looking for answers today does it.
If I can find it again- I’ll post a link for you 
Good luck
I raised my Predict v3 scores with my oncologist and he said v3 hadn’t been adopted yet as they were ratifying the data.
Hmm… always possible, I suppose. But my onc was happy to accept the new figures on the V3, when I talked to her about the discrepancy of both versions.
In my case, on either version, my stats are very good or exceptionally good, so I feel very lucky to have the option to step away with minimal risk for recurrence (with or without AI’s).
But I think my risk of heart disease, thyroid problems and osteoporosis is definitely higher ON them than off of them… of course that’s just my opinion. But, given how terrible I felt on anastrozole and how it affected me physically and mentally, I made the right choice for me.