Thank you.
Hi, it is like a “sentence”. But ask again to switch to a different AI. I started on Anastrozole, which was unbearable because of long bone pain, then went to examestane which wasn’t much better plus I had the added benefit of gaining weight. Then finally Letrozole which is far from perfect, but much better. No pain, no weight gain, but achy joints and muscles and hair shedding (I can live with these). Ive now been on AI for 6.5 years. My tumor was ER+, HER2+, no lymph node involvement. Ask again about changing to a different AI…it could be so helpful, and sounds like it wouldn’t be worse. Good luck.
It concerns me that so many women are expected - almost ‘bullied’ to take AIs with NO discussion of their percentage advantage. Even when they have life-changing side-effects they are urged to stay on them, going through different brands, but still suffering. I’m wondering if it’s a blanket treatment - if absolutely everyone takes them, whatever their risks, then overall BC cases will be down - great! But they don’t seem to worry about the misery, and cost to the NHS, of all the ill health caused as side effects of this blanket policy! For lots of people HT must be a really useful (if sometimes brutal) tool in their survival of BC. And some cope well with side-effects. But surely there must be a discussion with everyone as to their personal advantages. Maybe followed by a trial period to see how they go.
A 2% advantage (like my prediction was) means 2 out of 100 women like me will be helped by AIs while 98 will go through the side-effects for no advantage! My oncologist was happy for me to assess my own risk and make my own decision - I decided no - maybe I was lucky there?
A friend of mine who needed AIs more according to her recurrence risks, was made so ill that she finally gave up and has been better for it. A consultant for a different medical issue actually suggested she give them up (I don’t know the details) but her oncologist was furious and was very against her giving up, despite her debilitating SEs.
Is it possible to get 2nd opinions…or get a GP to suggest a different oncologist when someone seems to be going round in circles? Sadly it seems that a lot of women are not invited to be any part of the decision making in their treatment.
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I am going through this at the moment - have stopped my letrozole & am waiting to see my oncologist next month…how long before relief from the side effects??
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I’m sorry to hear you’re having trouble with SEs - are they very bad? I can’t help you with how long it takes to get relief as I decided not to even START taking them! From other posts it sounds like they usually go in just a few weeks - people talk about having something like a 6 week break to allow them to assess the situation. You could ask the nurses here? Or reply to another post? People are generally very sympathetic and helpful on the forum!
I hope you have a satisfactory meeting with your oncologist. Now at least, the effects of menopause are at least taken more seriously than they were just a few short years ago, and the side effects of AIs should also be taken seriously.
I would recommend that you discuss your personal percentage chances of BC recurrence with the oncologist. It seems that lots of women struggle on with them, only to find that they improve their percentage risk by only a very small amount. Sometimes the effects and risks of side effects outweigh the advantage of protection they give you. For myself, I reckoned only a 2% improvement in recurrence risk - ie it reduced my overall predicted 4% risk to 2% - just wasn’t worth the risk of side effects. Everyone is different in their level of risk aversion though and of course, it depends on how MUCH risk you have of recurrence!
Drug effectiveness v side effects and quality of life.
However, I do believe women should be allowed to feel part of the decision making about their treatment choices - not just feel dictated to.
Good luck, and let us know how you get on!
Hi all you lovely ladies,
I want to share my life choices to date with you all on this subject on stopping aromatase inhibitors.
Firstly, just so you know im not a younger person, 58, but young in heart and mind.
Back in Dec 2020 i was diagnosed with bc invasive lobular, 25mm lump, removed by lumpetomy, 0nodes.offered tamoxifen, being post menapausal, didnt agree with me at all, so after a break put on A1 anastrozole, along with Adcal D3,_as Al’s long term cause osteoporises, brittle bone disease, tried and perserved for 8 months. Spoke to my oncologist about what percentage risk i was at for reoccurance, 3% well on that score, i decided on quality of life without side effects.
Well 2 years and 9months later that percentage of mine must have gone through the roof because im now typing this message to you all, please try and find a happy medium with your medication A1’s.
Wish i had , as now have incurable secondary breast cancer of the spine, bones etc
Im not saying that stopping the treatment early caused this by all means, some ppl are lucky others aren’t so. Writing this isnt to put the fear if god into anyone please believe me. I believe once you have cancer it never really goes away, just lays dormant, (small undetected cells) . Until a tumour triggers it to grow again, apparently the percentage of this happening is really down to ones own hormones and inbalance.
In truth its down to your own experience and personal choices.
Stay strong ladies, cancer is crap 
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HI Purple Rose, sorry to hear your story.
Did you have chemotherapy? I didn’t the first time, but the second, my Oncologist reassures me mine was ‘gold standard’.
My BC was entirely different to yours too though. As you mention… everyone is so entirely different.
Sorry… Also, were you taking a Bisphosphonate?
(Everyone: if there was chemo, there should have been nothing hanging around dormant, as that’s obviously the idea, it’s all cleared, but like I say, everyone is different, so I think people need to speak specifically to their specific Oncologist as everyone, every cancer and every reaction is so different.)
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Hi LCPhi80,
Thank you for replying to my post 
Apparently at the time when i was first diagnosed with bc, the medication everyone (almost) is offered such like targeted therapy, bisphosphonate etc wasnt available, this was introduced in 2022.
Because i had 0 cancer in the lymph nodes, i wasnt scheduled for chemo, wasnt a option given to me, so i had intense sessions of radiotherapy instead.
My type of cancer stage 2, grade 1, invasive lobular is apparently quite sneaky in how it grows, hence although i had clearish margins after second lumpecomy ( uk guidelines clear) , a few cells remained in the breast tissue even after all my treatment. To which they then entered my lymphactic system and spread to which is where i am now 3 years later.
So the reason for my orginal post is, if you have any niggling doubts about something not feeling right, aches, pains that may come and go,then come back as a constant pain, itchy boob(s) tenderness around rib cage etc, please dont leave it and hope it will go, thinking its nothing, get it checked, i ignored it, thinking just age related/over done things at work, how wrong i was, several tests scans later, bingo, stage 4 sbc.
With all theses new drugs like abemaciclib, fulvestrant and denosumab etc being available since 2022 for breast cancer that less ppl develop secondary bc, thats my wish to all you young ladies …take care, be strong and keep smiling.
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thanks for that - it does help to hear others position & opinion… I stopped 3 weeks ago & still have symptoms… but not as bad.Hopefully when I see the oncologist in a few weeks time i’ll have more definate position…
Good luck! Just make sure you are listened to and feel part of the decision making - sometimes easier said than done I know! Perhaps start like I did -
“Since diagnosis, everything hitherto has just happened to me before I’ve even got my head round it ( for which I’m eternally grateful of course!) but now I want to feel part of the division making please.”
I rehearsed my speech on the dog before I went to see the oncologist!!
Hi, just reading your post and I’ve only started hormone therapy, I’m about 5 months in and it’s tough.
Please speak to your oncologist and ask for the Breast cancer Index test.
The Breast Cancer Index test, made by Biotheranostics, analyzes the activity of 11 genes to help predict the risk of early-stage, hormone-receptor-positive breast cancer coming back 5 to 10 years after diagnosis. The test can help women and their doctors decide if extending hormonal therapy 5 more years (for a total of 10 years of hormonal therapy) would be beneficial.
(I’ve left below where you can read more about it)
This information is provided by Breastcancer.org.
Donate to support free resources and programming for people affected by breast cancer.
You may find there’s no benefit, (fingers crossed) but we great to be know, because you’ve already passed the five years, and this is when the test is recommended.
Lots of love
Liz xxx
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Hi, i have been on letrozole for 3 years, i have had health issues due to, chemo, radiotherapy, and laterly biphosphonates which broke my femur.
My first issue was trying to get letrozole that didnt have me crawling on the floor in pain.
From head to toe. Pure agony, i wanted off it but was asked to persevere.
The problem i have now is.
That i keep getting UTIs i take an antibiotic each night, the reduction in estrogen is a cause it changes all your working parts below.
Now my skin is really really oily, i have tried everything washes, scrubs, moisturisers nothin helps at all. Now i have noticed that my upper arms, legs side of my face is getting hair. Even on my good breast.
I am assuming its the leteozole blocking estrogen !.
This worries me.
Is or has this happened to anyone else.
Im post menopausal.
Ive gone from losing my hair with chemo a nice light brown bob. To pure white fluffy hair. Its the extra hair and oil. Im afraid there is too much of another hormone now.
Thanks, and very best wishes to all you BC heros.
Gran c
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Hello! I am new here and it is so comforting to read all about this. What is the name of the advantage percentage test you took may i ask?
Hi @annac are you in the UK? The test is an NHS sponsored test called Predict which is based on tens of thousands of results from studies on the effectiveness of various treatments for Er+ BC. Typically it is recommended to do the test with your oncologist or BC nurse specialist. This is because the results of the tests can throw up questions which may cause the individual concern if quick explanation or answers aren’t available. From what I understand, MDTs will run the test for most patients but in the UK, they tend to stick to NICE guidelines which always includes endocrine treatment for Er+ cases. Predict is available online but you’ll need to know quite a bit of detail about your diagnosis to use the tool. A caveat, however, often women on the forum are questioning their need for endocrine treatment as Predict suggests that it offers only a small benefit in survival but for many women Predict can produce a challenging picture of percentage chance of survival even with the treatment and once you know you can’t unknow. Which is why the recommendation is to do it with one of the professionals in your team.
Thank you for responding 
I’m not in the UK, i live in Spain. There is nothing like this forum over here, feels like Ive been in a third world country ruled by big pharma industries during this journey. I filled out the Predict test alone and got a 2% benefit so have come off letrozole. But the test is for survival rates not recurrence. Is there any test available for that? I had 26% chance of recurrence on my oncoscore test i got a 38, which i had done so to see whether to have adjuvant chemo or not. After first infusion was taken to ER for diverticulitis and hospitalized with IV antibiotic for a week so scared the living hell out of me and quit chemo altogether. I am flying to UK for the day next month to have the rgcc test to see whether circulating tumor cells are present in me. I will see a digesterlogo as theyre called here, a specialist in digestive apparatus to see whether i have a leaky gut as i am very swollen. They say that if your intestine becomes permeable then toxins can go to your bloodstream, cause inflammation and this can cause cancer.
Hi @annac I would say that the Oncotype test is the most relied upon test for recurrence even though it predominantly is there to suggest whether chemo would be beneficial. My tumour was stage 1 grade 1 and in the Uk that excludes me from having an Oncotype test as chemo would definitely not be advantageous. We would all like to know how vulnerable we are to recurrence, particularly metastasis, but there is nothing that can accurately predict that. Therein lies our burden to go through life never knowing until it either happens or something else dispatches us. Good luck with all of your follow up appointments, I hope they give you clarity.
Hi Anna. My Oncotype said 5 % chance of recurrence was assuming I take AIS for 5 years . The latest Predict model says I have 1% benefit from AIs.
I did not qualify for oncotype on NHS - grade 2, 2cm , no nodes , clear margins .
My health insurance paid .
Can you speak to your oncologist ?
I’m going to ask mine in a few weeks , as I’m struggling with Anastrazole and worried about long term side effects . My plan is to try it for at least a year but as hypothyroid, the lack of oestrogen really affects me .
I was on HRT When diagnosed , so I know that could have fuelled the growth , although actually my oestrogen levels were very low .
I’m going to have genetic testing ( strong family history of cancer, not breast ) and applied to go on the TRAK ER trial ( blood tests ).
Hello annac, I didn’t take any test myself - I just had a discussion with the oncologist before radiotherapy! He asked me what I wanted him to explain first - radiotherapy or hormone therapy. When I said the latter was what I was dreading most of all because I’d already done one menopause he said something like “you may have just answered my next question!” He went and got a copy of all my pathology report for me (which I hadn’t been shown before), said they’d put all my stats “through their computer” (this MAY have been a predict test but he didn’t say) and it had come up with a 20% chance of recurrence without any further treatment which would reduce to 4% after radiotherapy. Wow! Says I…what does the dreaded HT do? “Reduce the risk by just another 2%” he said. It doesn’t eliminate all risk - I still have a 2% risk if I take HT with all its nasty (and I think dangerous) side effects. (Also, he said that HT without radiotherapy would reduce my recurrence risk to 10%.)
No brainer, - I said - No thank you!! And after discussion he said he was happy with my decision and nothing more was said on the subject!
However, the radiotherapy nurse was trying to send me off with pages of info and a prescription after my last rad session. When I said I wasn’t taking HT she was very surprised and even asked whether it was one of their oncologists that I’d spoken to! So I guessed that most people just take them anyway.
I’d always been led to believe that I’d HAVE to take HT - had no idea there might be leeway for me to make my own decision depending on pathology results! The BC nurse later told me that not everyone takes HT - she reckoned about 80%. She said if my pathology results had been different they’d have recommended I try it despite reservations, and I would have done.
If as Tigress has said, NICE recommend HT as a ‘blanket’ treatment, that explains why I was led to believe there was no option.
If just a few hundred very expensive operations are saved every year by THOUSANDS of women taking a drug as standard practice, that’s cost effective for NHS. The blood-pressure/cholesterol/pain meds caused by side-effects are probably costed in too. However, does the quality of life and mental health of the women who suffer and/or are frightened NOT to take the drugs come into the equation?
We all live with and assess risks every day. A good doctor will help us come to a decision best for us in our current situation.
Thank you so much for your comforting response. I am so worried that my body didn’t handle the chemo, i had just one infusion then nearly died when the side effects subsided and got an infection in my gut and nearly scepticimia… i was too scared to continue with more chemo hence why i am going to have the greek test done next week to see if there are circulating tumor cells in me. I also gave up the letrozol as I couldn’t handle the debilitating side effects with the exteme joint pains and depression. I gave that up after three months because i felt like i was not living, just existing, it was awful and since off it i have my energy level back, no joint pain anymore and my spirits are up again. I really wish i could have handled the treatment and now so scared it will come back. i take all sorts of supplements to help boost immune system. i was diagnosed grade 3 stage 1 Invasive ductal carcinoma last nov and had mastectomy with clear margins and no node involvement. my k67 was 30%. i had histerectomy five years ago to remove my ovaries and womb for prevention because i work with animals and we spay female dogs every day to prevent cancer so was first to want it done when i reached late 40s as a preventative measure.
Have any of you not had recommended treatment and if so had a recurrence?