Hi everyone - just looking for your experiences of deciding whether or not to take AIs as I am really torn.
I have had an Oncotype DX test done and have a low recurrence rate (4%) but that’s with taking AIs. On Predict it looks like they will give a 1.5-2.5% benefit which I believe is for overall survival rate. So pretty marginal which I think is what is making things so difficult.
I had a blood clot twenty plus years ago after I had my first baby so tamoxifen is contraindicated. I saw the oncologist yesterday and had a good conversation with him as basically I am really frightened of the potential side effects, both the menopausal ones which will make life miserable in the short term, and the more serious and longer term ones like osteoporosis and the cardio-vascular ones, particularly as I already have high blood pressure which the GP is failing to treat effectively.
I’m also worried about the joint pain issue so the oncologist said he’d recommend anastrazole in that case as it reduces the likelihood.
The oncologist has referred me to have a Dexa scan and also an appointment with a cardiologist so I have kicked the can down the road for another few weeks but I know the decision is looming.
My gut reaction is not to take the AIs, particularly as I’m already having menopause issues since I had to come off HRT last year. But it just seems a choice between dying of breast cancer or dying of heart disease/ending up in a wheelchair from osteoporosis! I know that’s catastrophising a bit, but it feels like that’s what I’m being asked to choose between, with very little concrete information to go on.
I asked the oncologist what he would do and he said he’d give the tablets a try as the side effects might not be bad, and then at least I’d know I’d done everything possible to stop the cancer coming back. And I can see merit in this too.
I don’t think there’s a right or wrong answer but I would love to know how other people have decided what to do and also if you are happy with your decision a year or more later.
And what fresh hell is vaginal atrophy? Hadn’t even realised that was a thing until yesterday when the onco listed it amongst the serious side effects of anastrozole! Breast cancer really is the gift that keeps on giving.
I had er+ 8/8 so decided to try Letrozole (same as Anastrazole to all intents and purposes) despite having very positive NPI and Predict scores. I’m older than you (I think) but didn’t get bad joint and muscle pain that is quite common, I did get vaginal dryness but took over the counter stuff (Hyalofemme) which controlled it and then it stopped after a few months. I’ve just had my second DEXA scan after 2 years and 3 months on Letrozole, no Osteoporosis or even osteopenia. I do get some brain fog and low mood but it’s all manageable.
In my view it is logical to try it. Very many women get no SE at all or at least those that are manageable. You may be one of them, you don’t know until you try. If you were to get significant SE then you could try Exemestane or discuss with your oncologist about giving it up but think on this - can you say hand on heart that you would feel comfortable with your decision not to have tried them if you were to get a recurrence or spread? There are no guarantees either way but just be sure you’ve contemplated everything before turning them down altogether.
Hi, I felt just the same as you when I was prescribed Anastrozole. After reading about the side effects I was really terrified about taking it. However, I had a chat with my breast surgeon, and decided to give it a try. My recurrence rate is just below 4% if I take it. Your oncologist gave you sound advice. Over 18 months later I’m glad I gave it a try. I had a few joint pains initially and pains in my fingers, but it’s better now, and I feel that I’m doing everything I can to keep the BC at bay. I had a Dexa scan which showed mild osteopenia, so I also take Alendronic Acid tablets once a week. It has helped me to keep active at the gym and go. on long walks. I also take cod live oil tablets , K2 with MK7 and glucosamine. My GP said they would all be OK to take. I hope you come to a decision that you’re happy with. Everyone is different. My initial fears were far greater than the odd side effect. Things may change as I continue to take Anastrozole, but for the moment it’s fine. I hope this helps x
I totally agree with you about this choice! I have decided to try and take it for 5 years and then see how I feel. It’s a 6% benefit for me and I was ER 8/8 so I need to give it a shot.
There are so many stories about hormone drugs that frighten people off taking what their oncologist recommends.
What’s more frightening however is being told your cancer is back.
Yes there are some side effects but they are livable with and settle down. I am on Anastrozole and take glucosamine to help with joint pain and it’s all now fine. Some people experience no side effects at all. Personally the dread of another diagnosis is what I want to prevent.
Good luck with whatever you decide. But it’s worth a try!
Thank you everyone for replying and for balancing out some of my fear of side effects with what you have actually experienced @Tigress@Cherrytree and @SL255. I think it’s easy to look at websites and forums and get carried away with the negative side effects, which are pretty scary when you look at them and my tendency has been to think they will all happen, which of course is really unlikely.
I have some more questions for my oncologist but I am feeling more and more like I will give it a go and I will try and remember that trying the tablets isn’t committing me to five or seven years of it and I can stop if the side effects are horrendous.
@Tigress thanks for your reply and for the info about the vaginal dryness - when the oncologist was talking about what he called “pelvic symptoms” (aka vaginal ones) it was a bit of a shock to me as he was on about dilators and everything which I hadn’t expected to be a thing. I do need to keep in mind that I’m not likely to get all these side effects. I’m hoping that as my natural oestregen levels are pretty low (52 pmol/litre from a blood test a couple of weeks ago) then it won’t be a huge leap to go down to nearer zero, it’s not like I had high levels before so fingers crossed it won’t feel like too much of a change for my body.
@Cherrytree the alendronic acid also scares me particularly with the jaw necrosis but I do realise that’s really rare. How are you getting on with those tablets in terms of any side effects? Thanks for the info about other supplements that might help - I’ve written these down and will give them a go if needed.
Good luck with it @znuttall - I am ER8 PR8 so very strongly hormone receptive too. Hopefully this means that the drugs will be effective and I am leaning more and more towards giving them a try. I wonder what happens with the PR side of things as no-one seems to mention it!
@SL255 yes, that is very true that the cancer being back would be terrible. Thanks for the tip about the glucosamine - I am making a note of all these so I have strategies in place if needed.
Hi – I was offered Anastrozole after my lumpectomy. I was fine for two weeks and then the bone pain began. It was horrific, beyond comprehension really, and I have fibromyalgia so am accustomed to a daily pain level. So I stopped the med and let my oncologist know. She offered a replacement which I declined. I’m 77 and have 6% recurrence chance. For me, quality of life is more important than gaining a few more weeks of living it. Not an easy decision, and it’s different for everyone, I know. But perhaps this will help a bit. Best of luck!
@arewethereyet all the malarkey about dilators etc is there in case you experience vaginal dryness or atrophy and it affects your sex life. As a late 60s widow, that is highly unlikely to affect me so I used hyalofemme as mentioned for the dryness and some d-mannose if the waterworks felt a bit off. Both available over the counter at any good pharmacy. Should it become an issue for you re the sexual relations bit, Dr Liz O’Riordan has a comprehensive video on tactics to employ from around 2 years ago, which you could find on YouTube. Let’s hope it does not impact you.
For what it’s worth, I didn’t have much in the way of joint pain/hot flushes during menopause (just three years of murderous, psychopathic rage) so I wasn’t surprised when I didn’t get them on the AI. Maybe you’ll be lucky too. Remember, if it doesn’t work out, no-one can force you to take them and the rest of your care will not be negatively impacted but it is worth giving them a good go, say 6 months or so before deciding.
@doglady so sorry to hear about your experience - that sounds absolutely dreadful. Did the pain go away quite quickly once you’d stopped? I don’t blame you at all for not trying again, like you say quality of life is so important. Thanks so much for sharing your experience.
@Tigress I’ll have a look for that video although I am not foreseeing any sexual relations here either. I’ve had no joint pain so far and although I’ve had hot flushes that wake me up at night and then I struggle to get back to sleep again, I don’t get them in the day and that’s been pretty much it for menopause side effects. No murderous rage either although that could have served me well at times! I’m more sad and tearful and anxious than angry which isn’t like the “real” me (will she ever return?) at all.
I think that, barring anything awful coming through from the Dexa scan or cardiologist, I will probably give the tablets a go. It’s been very useful being reminded that it’s not a long-term commitment just to try them and see how it goes, I don’t have to choose between all or nothing. Thank you all for sharing your experiences with me x
That’s ok @SL255 but the problem is - how long does it take to settle down ? I was told 3 months and after that time I did get improvement with the flushes brain fog and weepiness and the joint pain as well - but it didn’t last . Then someone else told me they usually settle down within 6 months . But after 5 months I had pain and stiffness in every part of my body , was having continuous sweating ( NOT flushing ) all evening . This despite Yoga classes , cold water swimming. My Dexa scan showed secondary osteoporosis and I was taking a lot of Ibuprofen which can interact with my blood pressure tablet to increase my blood potassium levels. I have a family history of osteoporosis and various MSK problems including auto immune .My hair was also very thin and brittle .
Then another professional told me that the side effects might settle after the first year - a phone appointment was made for me to discuss it with my BCN service but although they are usually very good they never called. Quite honestly it felt as though I was being lied to which I know probably wasn’t the case. For me personally the risk of stopping them was small (0.8% ) especially when stacked up against my other medical problems. I am lucky to be in this situation. After 5 months when I stopped I could feel some small improvements after 48 hours but it took my knees months to recover so I really doubt that my joint would have improved at the 1 year mark.
My decision was for myself alone - i would advise anyone to try them and give it some time. My surgeon said from the outset that he didn’t want me to have an AI and could stop Tamoxifen If I didn’t get on with it - but my history of retinal vein occlusion meant that I couldn’t take that . If my risk had been greater I would have tried the following options and @arewethereyet I would advise others to do this ;
Try changing brands
If one doesn’t suit you there may be an option to change to a different drug
Try taking it at a different time ( this didn’t really help me but has helped some people )
I have heard that there are initiatives in place to better support those who are starting hormone and other therapies to try to improve compliance so please explore any options such as acupuncture which is sometimes available without charge from MacMillan - so don’t be afraid to ask for help from your BCN .
Supplements - but check with your team first before starting anything.
And yes there are people who don’t have side effects or very few of them - I have met them in real life and they do post here as well . But they don’t post as often as those of us who do get side effects because they don’t feel the need so its possible that I was in a minority xx
Hi, I’ve been taking Alendronic Acid tablets for just over a year now with no side effects as far as I’m aware. My dentist told me jaw necrosis is very rare. I am ER8 and PR8 so that’s one of the reasons I opted to take Anastrozole.
I’m currently facing the same decision. At 47, i believed i was premenopausal, but tests after my chemo showed my hormone levels were extremely low. Therefore, itll be an AI, rather than tamoxifen. I’m going to give it a try…i can’t afford to go through cancer again,so need to try. However, the side effects worry me. I don’t know if I’ll be happy taking the biphosphates either.
Hi
I am in the same position. Stopped HRT last Sept on day of my lumpectomy after taking for 7 years and my symptoms are back, hot flushes etc. I really don’t fancy the side affects people mention with Anastrozole hence my decision to have full as opposed to partial breast radiotherapy which I had 3 weeks ago. My Oncologist thought a better approach considering with my side affects from stopping HRT and the likelihood therefore of me not being able to tolerate Anastrozole. However that said, there are many that don’t have symptoms and my lack of eostrogen and hot flushes could actually be at the point where they can’t get any worse! Hence it’s suggested to try it and stop if the symptoms are not pleasant as they are reversible which is probably what I am building up to starting in a weeks time and see what happens but it does scare be a bit!
@JoanneN what an awful time you’ve had and I really understand the feeling of not getting a full and proper story from the medical team. We rely so much on them and when you feel like you’re getting fobbed off then it’s so difficult. I am glad you’ve recovered from the side effects but I can 100% see why you didn’t continue. The advice you’ve given is brilliant, thank you so much and if I do go ahead and have problems then I’ll look at all these things. I like the sound of the acupuncture and have got myself on the waiting list for a local clinic that specialises in women’s health - it’s a three month waiting list but I thought I might as well get on it now in case I need it later. If nothing else, hopefully they can help with the blooming hot flushes!
@bluesatsuma it’s just such a dilemma about what to do isn’t it, no path forward that is definitely the best thing to do. I am leaning more towards giving it a try but that depends on if the dexa scan and cardio stuff come back as okay and if it looks like I might have major issues then that will be another rethink.
@dee7 so many of us in the same boat and it’s so difficult isn’t it. I am thinking the same as you, as my natural estradiol levels are so low, will I even notice that much of a difference? It’s not like I am going from the high levels of a younger woman to almost zero, I’m going from not that much above zero to a little bit less above zero. So I am hoping that things won’t get that much worse. Have you asked your team about having a dexa scan and maybe a cardio assessment beforehand? I am hoping these will set my mind at rest a bit about some of the worst side effects
Hi, I guess we’re all different and like you I was very worried about the risks of taking these AIs. My recurrence risk is 1-2% so they were relaxed about me not taking them.
It’s your choice at the end of the day and my understanding is that even as BC survivors we’re more likely to die of heart disease or dementia than breast cancer (the top 2 killers of women in the UK). That’s why I’m staying on my HRT plus the terrible joint pain and sinusitis I get without it. For me it’s quality of life but I do have a high risk tolerance and we’re all different. I’m ER8/8 too!
I’d strongly recommend Oestrogen Matters by Avrum Bluming if you can get a copy. I got one out of the local library. It might help your understanding. Best of luck!
% take it. Sooner than later. It’s among the most important part of your treatment. As important as RT, chemo and surgery. You don’t want to have it come back in your bone or lungs. It’s proven to extend survival and disease-free progression. In fact you should be prepared to take it for a minimum of 10 years, whereas they used to only recommend 5 years. Side effects are manageable. Letrozole is very effective too if you have trouble with anastrozole. You can ask your oncologist about it.
Sorry if this is an aside but how is everyone getting a % of recurrence? I had a lumpectomy last summer and I’m struggling on Letrozole. The joint and muscle pains are constant, worse than when I was going through the menopause. My HRT sorted all that so for 10 years my joints were fine and after going cold turkey on the HRT and taking Letrozole I’m in constant pain. Who should I ask about the chance of recurrence? Thank you!
It’s a huge question isn’t it?? To possibly suffer on an AI and for what benefit
I had chemo , radio and now on the AI (Letrozole) and would say 50% of the time the SE are manageable
I’m 3 1/2 m in
I’m taking every supplement “allowed” , Pilates recently & CrossFit and my joints still hurt
BUT what keeps me going is how important endocrine is in reducing metastasised reoccurrence
There’s a study I was encouraged to join OPTIMA which is studying whether it’s chemo or the chemically induced menopause that reduces the mets reoccurrence in pre meno women
I ended up pulling out and doing chemo anyways but made me realise how effective hormone treatment may be and may prove to be better than chemo for some of us in the future
So every day I take the pill I just reframe my fears
Yes some days are crap but I’m tweaking things along the way & it is slowly (very slowly lol) getting better xxx
so I used hyalofemme as mentioned for the dryness and some d-mannose if the waterworks felt a bit off. Both available over the counter at any good pharmacy. Should it become an issue for you re the sexual relations bit, Dr Liz O’Riordan has a comprehensive video on tactics to employ from around 2 years ago, which you could find on YouTube. Let’s hope it does not impact you.
% take it. Sooner than later. It’s among the most important part of your treatment. As important as RT, chemo and surgery. You don’t want to have it come back in your bone or lungs. It’s proven to extend survival and disease-free progression. In fact you should be prepared to take it for a minimum of 10 years, whereas they used to only recommend 5 years. Side effects are manageable. Letrozole is very effective too if you have trouble with anastrozole. You can ask your oncologist about it.