Ps forgot to add there’s a wonderful explanation of stats on a facebook group regarding risk of reoccurrence and %of benefit
It’s not a straight addition and subtraction problem it’s a % of total
Ie your risk is 4% with an AI and max benefit is 2.5%
This doesn’t make the risk 6.5% without it, it makes it 10.5%
Sadly I’m not a maths teacher but defo read more about stats and %
My risk with an AI is 11% which the AI gives a 5% benefit
Without out the AI my risk is 20% not 16%!
Defo worth it for me
X
Hi @josie2 so many of us in the same boat and yes the heart disease in particular is bothering me as the AIs increase risk . . . I have come off my HRT already back in autumn and was managing okay-ish but I am really not sure about coping if things get worse and I can fully understand your decision. My daughter works at the library so I will get her on the case with the book!
Thanks @gringa616 on the face of it I agree, it’s really important but the side effects can be really significant and affect quality of life and my difficulty is finding that balance. I am leaning more and more towards giving the tablets a try now to see how I manage with the side effects I do get.
Hi @wackyny sorry to hear you are struggling, it sounds awful for you. I got my info on chances of recurrence from the Oncotype DX test they did on my cancer tissues (this tells you the chance of distant recurrence after 10 years if you take AIs), and also by going on the NHS Predict website (if you type NHS Predict breast into Google it will find it for you) which I’ve found really useful and gives you your % chance of survival (not necessarily disease-free though) at 5, 10 and 15 years. I’ve been on this website myself but I know some people prefer to go through it with their oncologist.
Hi @idcand49 yes it’s a huge and difficult question, horrible being faced with something like this. Your advice about reframing things is really useful - I have got the AIs in my mind as something bad and harmful whereas I think it would be a lot more helpful to think of them in a more positive light as giving me protection. Do you think the supplements have helped? And thank you for the info about the statistics - maths is not my strong suit either but that is very interesting and is another new perspective on it for me. I do think I am going to give it a try unless anything particularly alarming comes back from the Dexa scan or cardiology and if I do go ahead, I need like you to reframe it in my mind to help me cope with my decision!
Thank you everyone, this thread has been amazingly helpful to me and it’s really helped to know I am far from being alone in struggling with this decision.
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All approved by my onco;
Magnesium (taking at night to help me sleep)
In the am with Letrozole
Turmeric
Collagen
Vit D with vit k
Vit b12
I used to take Letrozole at night but the insomnia was too much (plus I’m having Zoladex every 28 days to suppress my ovaries which impacts my sleep the first few days after my injection)
I also noted the brands & side effects
SUN gave me trigger finger & it disappeared once I used the brand Femera (literally went in 24 hrs!) so brands make a difference
I’m also starting acupuncture in a couple of weeks
Basically I’m mitigating the hell out of the SE
Also, I’m going to ask for vaginal oestrogen (safe to use ! Onco even said so but asked me to wait to see if I needed it- and I feel I do)
Good luck x
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That’s fantastic, thanks so much @idcand49. Really useful info, it’s so good to have these pointers as I’m finding this a real minefield as previously I just had HRT and I was fine!
I’m taking melatonin at the mo which the onco is fine with as it also has an AI effect, and it does seem to be helping with my sleep so I’m going to be carrying on with that if it’s needed, and that’s very useful stuff about the other supplements thanks. And that’s amazing how one brand can cause SE and the other doesn’t!
I have got myself booked in already with a specialist women’s acupuncture clinic just for general menopause symptoms that I’m getting at the moment, but it’s a three month waiting list so I’m glad I’m on it!
My onco has suggested CBT for menopausal symptoms and I am also going to be giving that a go.
That is really good about the vaginal oestrogen and I think I will ask for that at my next appointment. Thanks for all your help, that’s so useful xx
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I have delayed in taking anastrazole for 2 months since getting the prescription. Didn’t want to feel any worse than i already do from stopping hrt. Three days ago i began. Waiting to see how it goes. Everything hurts but it already was. Feeling like I’m 80. Brain feels like its behind a closed door. X
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Hello
I started taking Anastrozole in January. They also put me on Verinzio- The Verinzio made me very sick and I had to stop taking it. But the Anast hasn’t been bad. Evereyone is different but I feel like this med has been the least of the issues. I wish you the best.