Hope youre ok. I think the secret is to take it case by case. Did your Oncologist look at Predict? If its suitable? What was said about the reoccurances of more tumours? The research out there has to be looked at in reference to your case. Ask a lot of questions! You may choose to go for a middle route and take the best of what it offers. Please bear in mind that it tends to be people who have had problems who report it on here. The ones who dont have se or they are minimal tend to not. I found I was ok for several years before I started to notice ses kicking in. Then they slowly increased over quite a while before I decided to stop at 7yrs. Its not black and white.....I hope this help.....though am late in my response to your post!!
I think there is no right or wrong whether to take or not. You have to weigh up your risk factors fir and against. Also finding an extrogen blocker that gives less se,s helps too. I was on Letrosole at first my onc switched me because of the awful se effects. So I settled in Examastane and was pretty good on it for several years. 5 years went by and I felt ok....less energy but was ok. But thrn other ses started to kick in and floored me. I just think as a woman am not built to have no estrogrn in my body. The ses do accumalate. You have to weigh up the pros fir sbd against. Its the only way.
Yes we are certainly all unique and have completely different experiences of breast cancer treatment. I too had Herceptin which absolutely floored me and gave me horrible side effects.
With the Anastrozole, the oncologist recommended 5 years if your lymph nodes were clear and 10 years if not. I could not have tolerated them for 10 . My hormone level was 8/8 so with this high level, it made sense to me to try and find a way of coping with it for the 5 that I did.
Another point to consider is the brand type. I am not alone in saying that although the active ingredients are the same, the fillers are not . I found that I tolerated the brand Accord the best so always asked for that one. Teva had the next amount of side effects for me . I had the Mylan brand once and felt horrendous . Finding a brand that suits and sticking to it if possible can eliminate some of the side effects.
Good luck to all.
I was extremely sick from it at well! I also feel that it would have killed me, and likely in less than 4 years, I certainly would never have made it the 10 years they wanted me to take it.
I was on Examastane for 7yrs....Oncologist recommended 10yrs. There is a further 5% reduction in reoccurance between 5 & 10yrs. By year 7 completed I had a vaginal prolapse impinging on bowel causing bowel incontinence, memory & high executive functioning deficits, extreme fatigue, needed bone strengthening treatments. All these things a consequence of Examastane. My QofL had nosed dived. I had a very aggressive form of bc that was large 10cms so had the full works & Herceptin that permenantly affected my heart etc. Am grateful to be here & in remission but as my Onc said there comes a time when the impact on the Qof L is greater than the benefits of treatment. He recommended a 3 month break & if I wanted could go onto Tamaxofan if I wished but no pressure to do so......Ive decided not to as he said "You've done your time." - cant face anymore for the potential 3% benefit (my calculation). Looking at Predict whatever I do my profile of bc means it is highly likely to come back at some point & snuff me out. So Id like to enjoy the life I have now. I'm 66yrs. None of us know how long we will live....most people who haven't had cancer live in the fantasy of 80score years and more life span. Without BC treatment I would be long dead by now for sure so to me am living in extra time and I plan to enjoy it. 😊🤣 xx
I'm glad you did good! But for me, the extreme issues I had would have destroyed me. I have never been so sick and had I kept taking it I would have been in the hospital, or worse. I guess everyone is different but it's not something I will ever do.
I am writing this post to encourage and help those who are thinking about giving up on anastrozole.
Before doing so please consider that oncologists would not recommend it unless they thought it would help, it does after all cost the NHS a lot of money.
If there is only a small percentage of benefit, surely it must be better than potentially having chemotherapy in the future or not living as long? .
I have just completed 5 years of it. Each day of taking anastrozole was a daily battle of side effects but i found a way of getting round it. The most difficult side effect was constant fatigue. The answer to it was to keep as active as possible even though it seems at the time that its the last thing you want to do.
Try changing what you are doing frequently too if you can when you feel yourself dosing off during the day.
Dress in comfy fitting clothes that you can remove quickly for the hot flushes.
Use YES vaginal moisturiser .
Keep a packet of polo's at the side of the bed/in the kitchen/ in your bag to suck on when you feel sick and go out in the fresh air.
Sleep with a small cushion between your knees to improve muscle and joint aches, made worse by a night sleep when you are still for a long time. Walking will help with this too.
Forget lotions and potions that claim to make your hair thick again and keep a shorter style and use coloured head bands and nice earrings.
Be kind on your brain, it will come back . Try not to worry and only do what you feel capable of doing.
When you have finished the 5 years, be proud of yourself and 20 days after stopping it, look back like i am doing today and think, how lucky i am to be here and how much better i feel already!
I have felt very grateful over the 5 years i have had surgery, chemotherapy, radiotherapy and hormone therapy ,to the people commenting on this forum where i have found good advice and support.
This is my final blog on this forum now and i wish all readers good luck!
as I said before, we’re between a rock and a hard place. I was in turmoil as to whether I should stop taking it or struggle on. I relate to all that has been said with regards to the awful side affects. I had a chat with my GO and she suggested I tried an anti depressant. I didn’t want to take any more drugs but for a trial I said I would. I am now taking Sertraline 50mg. I have to say that it has really made me feel better. Not only mentally but physically too. It’s like I’ve gone back to pre Anastrozol. I don’t have any bad side affects. At all. I am glad I tried it. So I will continue to take Sertraline while I’m on Anastrozol which is for another two and a half years.
After taking that medication for 9 days I was sick for a month. I couldn't eat, I couldn't drink water, I couldn't hardly get out of bed. That medication is horrible and I will never take anything like that again. Glad you're doing better
I stopped anastrozole because it was killing me & I wasn't going to take more drugs to counteract it's side effects, especially my blood pressure which increased 20-25 points. I reached a breaking point and chose to quit anastrozole & come back to life. Now three months later I feel so much more normal. I'm normally a very active person and at 71, quality of life is most important. Anastrozole is poison.
Thank you for your message. I am having quite a bit of hip pain and muscle pain and feel like I have aged quite a bit. I stopped taking Anastrozole for a week and felt quite a bit better. Now my oncologist recommends taking an injection to prevent fractures and yet the Anastrozole is the cause of it all. I am a Caregiver. I have been through Chemo and Radiation for 2 other cancers, one possibly caused or promoted by the Tamoxifen. I would like to stop, will try the magnesium and see if this lessens the pain. Will not take the injection for something caused by the Anastrozole. Thank you for sharing. Really would like to feel better and have more endurance.
i wish you all the best for the future.
I have no wish to alarm you at all and it’s great you are low risk, however I too was low risk after my first diagnosis….4mm DCIS so no spread from duct ( never mind the breast) …it was classified as grade 0 cancer pre invasive…. I was ER+3 ……I was told I had a 1 to 2 % chance of recurrence ( absolutely tiny) …however I was unlucky, I went on to have BC twice more( although you could say I was lucky as it was primary BC again and I was able to be treated with curative intent)….so I guess what I’m saying is that statistics are just numbers about a BC population….they are not about the individual…. I was 47 at my first diagnosis 10 years ago….if you are completely sure you have made an informed decision you are happy about that’s great….if not then definately speak to your team again before committing to your actions.
Best wishes to you
Thank you so much for reply. I’ve looked at my notes I am ER 8 and PR 8 so obviously hormone therapy is a very good option. My tumour was tiny, 10mm. No spread to lymph nodes. I was 49 at diagnosis recently turned 50. My mother died of breast cancer ages 66. She was diagnosed at 55 and took tamoxifen for 10 years after treatment. I I’llm not normally a person to give up at the first hurdle but feel so low. Neither am I a risk taker but because my tumour was so small and hadn’t spread out of my breast I feel that the risk of recurrence to be very small.
im so sorry that you’ve had to go through this twice. If my risk of recurrence was high I would definitely continue all treatment that was offered to me.
my hospital use the Allred score ( as do lots of hospitals) ….it’s like a tool which identifies from histology results, which ER + cancers are more likely to respond to hormone therapy …. It’s a score out of 8…. I was told 7/8 and/or 8/8 scores have a good ( up to 75% ) chance of being beneficial…and then it’s a sliding scale down …. When I had BC previously my ER+ result was 3/8 and me consultant said I could take it or leave it with hormone therapy…. This time ( at 7/8) he said the wise decision would be to take it …..I’m not a risk taker in any part of my life so i was always going to give it a good go….and to be fair…although I have all of your side effects and more( although maybe not to a similar degree) ….they are not sufficient for me to stop…. Having had BC 3 times I will do everything I can to avoid a recurrence or a diagnosis of secondary cancer….. but I completely get that we are all very different…. I’m 57 now so maybe a lot older than you are…..I take citalapram for anxiety…I had my dose upped …..and am prescribed propananol PRN to take when needed for anxiety…..i hope everything works out for you…. It’s like ‘Hobson choice’ isn’t it
im new to this website. I was diagnosed in October and had a partial mastectomy then 15 sessions of radiotherapy. I started tamoxifen in January but felt so awful my oncologist switched me to a an Anastrozole. My mood is seriously awful, complete loss of sex drive, I ache everywhere in particularly my feet and legs, hot flushes and poor sleep. I have decided to stop taking any more tablets. I am already on fluoxetine for anxiety and my doctor just says to increase the does which I’m not going to do. Prior to starting the ana tablets I was coping.
sorry for the long post but you mentioned your ER status was 7/8 mine is 8 what does that mean?
I believe the risk of uterine cancer are higher than tiny. I know of someone who took Tamoxifen then died of uterine cancer. It spreads fast if undetected. Plus my gynecologist wanted to do yearly uterine biopsies to make sure to catch it. This alone scared me. And makes no sense either; to take a medication for breast cancer that can give you another cancer!
I too have stopped all hormone blocking treatments. Although for myself I did not have any spread to my lymph nodes. I also did not require chemo. I had lumpectomy and completed radiation treatments. I was 54 at the time of DX, now 56. I am through menopause. My last bloodwork after a break from Tamoxifen indicated trace amounts of estrogen. My oncologist still wanted me to take the blockers. I said it is really necessary? She said it can come back anywhere if it comes back, not just BC. So I gave anastrozole a try but cannot do it. It was horrible. I felt like I was aging super fast and everything was becoming a problem. I felt 100 years old in a short 3 months! I stopped a little more than 2 months ago and feel so so much better! I may be making a huge mistake but I just can't live like that. None of us are guaranteed extended life or shortened life for that matter. I am taking my chances and having faith they got it all. Prior to BC I was taking an estrogen gel! Now, nothing but what my body has. I don't feel my body makes extra estrogen that's why I was taking estrogen in the first place. But the little my body has, is enough to feel good enough to live life.
However, had it spread to my lymph nodes, I would take it, it may just give you some extra time. This decision is not for all cases.
Absolutely JD! No guarantee either way and percentages are just statistics.
That's why I started this thread, why I've stopped all hormonal tablets now and declined chemo.
After 4 years, I am going to end my input here and forget BC as much as possible. Love life! X
You may live just as long or longer without Anastrozole, as taking it doesn’t guarantee the cancer won’t come back, and not taking it doesn’t guarantee it will come back. I have done quite a bit of in-depth reading about it, it reeks havoc on your body! I’m only 54 and I elected to stop, due to dangerous and miserable side effects.
My oncologist told me that the risk of uterine cancer from Tamoxifen is tiny. But, at this point I don’t know what to think!
please can you send me the data on tamaxofen " frequently causing uterine cancer"? Thanks. Am on a break from treament after being on Aromasin for 7yrs and my oncologist wants to move me across to tamaxofen for the last three years.
I have been on this drug for 7years. My oncologist wants me to take it for ten. Am told the second five years gives a further 5% reduction in reoccurance. I didnt feel too bad for the first five years, fatigued was my main symptom but have declined especially in recent months. I am now fecal incontinent and have a uterus prolapse......the pandemic prevented access to any help. Am waiting for an appointment with gynae but there arent any so have had to wait a further two months untill the end of June to even ask for an appointment. So heading to the incontinence team and a pessary to be fitted. Im 65 and I feel soooooo old. I am exhausted all the time and if I push myself to do more I crash. Ended up seeing my oncologist privately as the NHS had signed me off. So he recommeneded I stopped. This drug has affected my brain -memory and processing. I cant work at the moment because I cant concentrate. I think I shouldve been switched at the five year mark to be honest. Am on a three month break now but have serious doibts about starting on tamaxofan. Is it worth it for a furthe 3% rediction of reoccurance. Am highly doubtful of that. I think my body has had enough and it needs to breath!
I would advocate the five years for sure.......for me it reduced the reoccurance rate a lot. Am lucky to be here in full remission as I had stage 3a breast cancer, HER2+, estrogen+ Grade 3 and so had the full works including reconstruction. I am clear I would not be alive still without this treatment and for that am really eternally grateful but we are all different and I think Ive done all I can now and for me it is time to stop. Quality of life is just as important and my oncologist agreed with me on that. Currently my QoL is rubbish. Ive a feeling that if I decide not to go onto tamaxofan in three months time, he wont push me. I stopped four days ago and feel no different.......was told it would take a Couple of months before I start to feel better. Cant wait!! This is not to say that no one should do the 10yrs but just that to keep reviewing it and take advice from your oncologist. No one knows how long we will live but given a diagnosis of bc just means you become aware of your own mortality. My life has been saved by all the amazing treatment and now my time has come to enjoy it! Just need to recover from having no estrogen in my body for 7rs & get my womans troubles sorted.......and then am off to explore the amazing world out there!!
I agree, for me Anastrozole side effects continued to get worse over time. I took it for about 18 months before deciding to stop due to side effects and leaning about additional health problems it could cause. At only gaining me about 1-2% cancer survival rate and about 20% loss in survival rate due to heart problems I decided a naturopath would probably help me more than the drug, so I elected to stop taking it.
Wow, your side effects sound just like mine, everything other than the joint pain is to the tee! My blood pressure has also greatly increased which I suspect is causing some heart valve problems. My oncologist says that high blood pressure can be caused by many different things and can start at any time in life out of the blue, and he doubts it is from Anastrozole. I find it coincidental that HB started within 3 months of starting Anastrozole. It seems as thought my reoccurrence rate with anastrozole is about 1% and without about 2%, my gut tells me it will cause more health trouble taking it than not.
Glad you are feeling better. I know exactly how you were feeling. I reached the breaking point and knew there were only two options, check out or get well on my terms. I feel better day by day, getting the poison out of my system. You roll the dice and take a gamble -- but really we all do that every time we drive down the street, not knowing what wacko might come along.
Are you aware that tamoxifen frequently causes uterine cancer. If youve had a hysterectomy, fine, otherwise no way. One more thing most dont mention
I have taken anastrozole for eight months. The side effects do not go away, they get worse. My hair was thick, now I'm afraid to brush my hair as it is now quite thin. No amount of lotion helps my skin & nails, skin so terribly dry & brittle nails. I am so tired,, but cannot sleep since the beginning of taking this drug. Shortness of breath is another major issue and an increasingly persistent couch. Depression, anxiety, waves of nauseous feeling, food seems different, joint pain, sun sensitive, etc, etc. From being very active, almost 71 years old, my quality of life has plummeted to a constant struggle and I'm supposed to take this for five years. A week ago, I made the decision to enjoy life and regain quality for hopefully 20-30 more years, and stopped taking anastrozole. Unbelievable how, day by day, I am feeling better and better. Maybe live longer and be miserable- not my choice.
I don’t agree, side effects got worse as time went on, as it would as more estrogen is depleted from the body, it’s not normal how these drugs are affecting other body parts. I have also read on an American site this to be true. Oncologists just dish the pills out, basically going by a textbook.
Staging also now is done by the AJCC the 8th edition, which was released January 2018, some specialists aren’t even up to date on that
I’ve been taking anastrozole for about five months and haven’t had any noticeable side effects so far. I’ve had two or three different brands. My nurse said most women who get bad side effects get them early on, and in many cases they wear off within months as the body gets used to the medication. I appreciate we’re all different and some women do suffer, but wanted to let you know my own positive experience (so far at least!) for balance. Best wishes to all x
Its fine to have your own opinion...but I don't think you can make a statement about someone else's oncologist without any background or evidence....it is in correct that side effects get worse for everyone...they don't...for many people they improve after a few months...and for others they have relatively few side effects at all....of course you will read about the hard times on here...becausecpeople with no 8ssues are less likely to seek out support on a forum.
I'm sorry you've not had a good time on the medication.
Hi, I took this drug for 16 months, I told my Surgeon I cannot take it any longer it was so debilitating. Affected my shoulder and hip straight up, then lower back, I took some anti inflammatory and that eased it, mental fog, exercise helped at 1st anyway fast forward bones were cracking, clanging, it got to the point I had to take ibuprofen to even exercise or do housework. I had a bone density test before treatment then in January 2022, 18 months later, my density had decreased by 10%, although still just in normal range. My legs would feel like they were being ripped off me in strands, sweating, always hot. This is not normal that these medications are doing this to your whole body. Anyway Surgeon said stop taking them. He was happy if I stopped completely. He then said he’d be writing to my Oncologist and would plant the seed that I go on Tamoxifen. I just made it with the tablets till her appointment day. She said take a month break then start Tamoxifen. Well it’s been 16 days and so far so good, not hot, nothing really except at times dry mouth but I noticed that more if out shopping and I do tend to forget to drink when running around. If it stays like this fine, if they causes me grief I will be not taking anything. I also found an article where by putting in your specific information the percentage of having just surgery and adding the fact hormone therapy added the percentages for 5, 10, and 15 years were exactly the same.
I believe Drs push drugs, I also watched a webcast with guest speakers from Australia and Boston USA who both stated they have learned over treating is not necessary. My opinion these drugs should be banned, you simply cannot live with those side effects and absolutely no quality of life. I’ve done some research and found yes it’s all about money!
I agree also that doctors push pills that sometimes are not necessary. I only took anastrazole for 9 days and I have never been so sick in my entire life. For only taking 9 pills, I was sick for one month. I'm talking unable to eat or drink, having to go to my regular doctor to get hydrated because I was so bad, etc. When I finally realized the pill was doing this, I was quite angry because the doctor never told me the horrific side effects that could happen. Several weeks later my hair started falling out! I have long, thick hair and I've lost over 50% of the thickness of my hair, it's not thick now. This also is common. I don't see how something that can make you so ill for so long is good for you. My cancer was very small and had not spread anywhere. I had radiation and and after I told my surgeon about the side effects of the pill she she felt pretty confident that I didn't need to worry about it because I did have radiation which was a plus. I won't take another pill, I've been told that a good diet, some exercise, decent sleep can make a big difference. I don't know what to tell you, it's a personal choice but you might talk to another doctor, not the oncologist, to get an opinion. I did some research and found out the percentage of cancer recurring without taking the pill is not that much more. That may differ with the severity but it is worth checking into. I wish you the best of luck.
Hi Jackie 60
I am wondering how you have got on with anastrazole following your post?
I have just been prescribed this but am terrified of even taking the first pill.
I don’t like to take pharmaceutical drugs unless absolutely necessary - and my fear (after much research) is that if I start this drug, before very long I will be on any number of additional meds to combat all the side effects.
My current inclination is not to take it - I had 3 Tumor’s in one breast - all grade 1 and had mastectomy and IBR - no chemo and no radio. Sentinel nodes were all clear. Following my mastectomy I have a seroma - my BC surgeon prescribed 4x the standard dose antibiotic as a ‘pre-caution’ - the dose was so high the pharmacist queried it with the surgeon. I found this alarming so decided not to take any until I had the blood test results. Which confirmed no infection present so I didn’t take them.
It seems to me they are a bit too keen generally to push drugs without consideration of individual circumstances…
I just don’t know what to do.
I have struggled to find anyone taking this drug without issue or with an overall positive outcome - are there any good news stories out there for this drug?
My hopes and best wishes to you all for a long and painless future xxx
this forum is great, we can read about other experiences and thoughts and put our own into the mix. It did help me make my mind up for my own decision.
I have decided that I will continue and complete my five year course of Anastrozol. Yes, the side affects are awful in so many ways but after a lot of thought, the bottom line is that I don’t want a second diagnosis of cancer. And as this medication is found to reduce that happening then I’m going to persevere.
I had a long talk with my doctor. I told her I was feeling depressed and anxious, as well as suffering all the physical side affects, so she put me on a course of antidepressants to help me.
we all react to our situations in different ways, and we do what’s best for ourselves. I’m settling into my 5 year plan now… good luck
i did stop ! and 2 years later i have two kids.
one is a year and 3 months and the other one is 2 months. so far im 2 and a half years in remission ! so i guess its a positive story so far! but there isnt a day that goes by that i dont worry - should i nake the sacrifice for my kids. my oncologist says the symptoms are only severe in the beginning and it gets easier. i am considering going on it after the next olympics.
Hi Jacey, I am new to the group and browsing the threads and saw yours. Did you stop and how are things now? I have the same question you asked with same intro.
thank you for your thoughts. I think we’re between a rock and a hard place. I’m now thinking that although my quality of life is much less than it was pre Anastrozol, it’s something that I’m going to have endure. I don’t want to stop taking it before the full 5 years of treatment, it’s what is advised. I’m not risking that. I don’t want a second diagnosis. Good luck to you too x
Its not easy is it.....I take letrozole....my tumour was ER+ 7/8 .....so I will definitely carry on taking......I am not risk averse ....I have bad health anxiety...for me the stress of not taking it and worrying about secondaries would outweigh any benefits to loss of the side effects ....but we are all different .....and therefore will make different choices....I am also always mindful that cancer cells do not always spread by the lymph nodes...but also ( undetected) by the blood ....so this is always a worry to me too....but this is me...not you....talk it through with your team....good luck
Hi Jacey, I totally agree, have you found anyone that has answered your question?
I can relate to all those points you listed. Luckily, when I had my surgery they found that all my lymph nodes were cancer free. So then why do I have to take anastrasol for five years to ‘make sure’ it won’t return, and suffer all the awful side effects of the drug?
I see that your post is now 5 years old. How are you doing now please? I had my surgery in October 2020.
best wishes to you
Where do you find an alternative therapist? I live in Bucks, and would prefer to look at alternatives to Letrozole. (Another version of Anastrozole?) An help would be great!
I have taken Calcium since my journey with endocrine therapy started. Even after stopping Anastrozole after 10 months, switching to 3 years Tamoxifen, I still take it. Have stopped all hormone pills now and have teeth problems even with the Calcium. Latest is high fluoride toothpaste! The journey continues..
Not sure that helps! Good luck
Are you having to take a bone loss medication when on these drugs? I am not wanting to take any more meds and thinking about stopping Anastrozole. The Anastrozole is what ruin my bones and I am perplexed as to what to do now.
I was on and off the aromatase inhibitors for 1 1/2 years. They did not work for me. They had too many side effects. I have friends who tolerate them well, but for me I was miserable. I am now on tamoxifen and I am 1 year in. Again with tamoxifen I could not tolerate the full dosage, so I am on a half dose. Something is better than nothing. I also, take a capsule of turkey tail mushroom which helps to support the immune system. I agree every person needs to research and decide what option is best for them. Prayers up to all my cancer warriors!
Hi Jammin, my docs didn't tell me either. The Anastrozole did just the opposite....ask a nurse, not a doc. My body MADE hormones.....it was fine for 5 yrs before taking it. If someone has great luck on it, fantastic. However, EVERYONE/EVERYBODY DOES NOT react/respond the same way. Make yourself aware of the side effects of this drug and make sure your doctor is aware also. Pharmacists (most) are aware, doctors are not. Nurses appear to me to have more knowledge of this drug and how the boy reacts. Good luck and remember to breathe!
I'm so sorry for all your going through. I took anastrazole for only 9 days and I was so sick!!! I've been off it 3 weeks and I'm finally better but still have nausea and tired. This pill is dangerous. I had tons of side effects and lost 6 lbs in 8 days. I won't ever take another pill. Too much to mention but those doctors need to tell us how bad the side effects can be. Mine sure didn't. Prayers for you!