Hi @terk welcome to the forum and thank you for telling us your story. Endocrine therapy is such an individual experience and we each have to decide on what is most important to us if side effects are in evidence, there’s no right or wrong. I also think for many of us, as we age, quality rather quantity of life becomes more important so, as long as we are completely clear in what the risks are, and there has been a discussion with the oncology team first, giving up the AIs is a legitimate choice. I wish you good health and a cancer-free life in the future.
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Hi. I have done my four weeks without Letrozole and I don’t feel much different. So I saw my GP and she is sending me off for an ECG and a referral to a cardiologist. The ECG will be Wednesday and I don’t know when I’ll be seeing the cardiologist for a heart scan. The breast cancer nurse has told me it’s ok for me to wait another two weeks before taking the letrozole. I also need to have a blood test because my diastolic is high on the blood pressure monitor so been prescribed higher blood pressure tablets. This is to make sure my kidney function is ok. I’m not scared anymore which is strange for me, in fact I’m more concerned about the fact that my tooth filling fell out this morning and so I have a dental appointment tomorrow. This is an update on my previous posts by the way. Oh yes…the GP has also asked for a referral for me to see a breast cancer consultant to discuss my medication with regards to risks etc. I’m hoping to take a holiday in September as I’ve had to cancel one already and didn’t bother to book another because I’m superstitious. I don’t want anyone to think the letrozole gave me all these symptoms, they would have happened anyway because of my family genes. I do hope I can go back on the Letrozole because it makes me feel safer and I’ve been lucky with regards to side effects. Painful joints and stiffness that go away after a good walk is about all I had. If you see this Tigress, I hope you are ok. I never forgot how helpful you were when I posted for the first time. I’m still doing my walks and exercise but blimey, this year is going so fast. I’m trying my best to make it go slower by standing in a post office queue, sitting in a dentist chair, watching a pan of water boil, waiting for my husband to find a perfect parking place, oh and striking up conversations with people I know are really boring. I have a new network now which has enabled me to post. Take care all and best wishes. Next time I post I hope it’s good news but today is now and that’s how I live. In the “now”.
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Hi @lori06 how nice of you to remember. I have my 3rd of 5 annual mammograms a week today so a touch of scanxiety is beginning to kick but other that, I’m fine thank you. I have had a couple of 6 week Letrozole breaks, you will be fine. The best of luck with your cardiology investigations, Everything crossed.
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Thanks for replying. I’m still trying to work out how to use the forum. Waiting for tests and results is something I forgot to add on to my list of how to make time go slower. Seriously, I’m keeping my fingers crossed for you too and anyone else here who’s waiting. I get the jitters sometimes and I’m lucky to have my dog. She’s so in tune with how I feel and her sweet and funny nature is a tonic and she gives me a reason to get out of bed in the morning (even though she stays on it). I’ll keep checking in. Take care.
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Hi there, so many tricky decisions during our breast cancer treatments and this is one of them for sure. For what its worth I ended up totally pro Tamoxifen and similar drugs after my experience- and I began being v questioning about them, particularly wondering about benefit vs side-effect impact.
I had my first BC 15 years ago. MX, Chemo, rads and then Tamox. I hated it for first 6 months but then I was okay and ended up taking it for 10 years. Got my second BC, a new primary after 15 years- so basically I have a body that is super keen to grow oestrogen driven BC and Tamox protected me. That protection has meant everything to me. Those 15 years have been amazing. I am now starting Letrozole with a clear understanding of the many many downsides, but also, if it works to keep cancer away, I will try really hard to deal with the side effects in a proactive and positive way.
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It’s reassuring to read about the positive effects of hormone treatment keeping cancer at bay. But it also reaffirms my thoughts on the fact it delays recurrence rather than kills the cancer cells.
Ive read a few studies that discuss how cancer cells can lay dormant for years, and it annoys and scares me that hormone treatment is initially a max of 10 years. Recurrance for ER is well documented to happen a lot later, and this appears to coincide with hormone treatments finishing. I don’t mean to sound unappreciative of medicines and research, it’s a response to my own thoughts and reading your post @margie_toon , it seems your new diagnosis fits this “scenario”.
I’m really sorry you’re having to go through this again and I hope you have equally good or longer success with your next round of treatment. Stay strong x
Just to clarify, I didnt have a recurrence I had a new primary. The treatment I had for first BC removed all the cancer cells of that cancer. Tamox stopped a new growth until 5 yesrs after I stopped it as directed by protocols ( 10 yearsbeing the max,) Then my oesteogen encouraged a new primary. Dr Liz O’Riordan’s brilliant video on Tamox explains the process really well, and its quite entertianing.
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All the best margie-toon.
My sister in law had a new primary breast cancer 22 years after the first was clear. She now has letrozole following surgery and chemotherapy and feels fairly ok on it- and reassured!
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Hi there. Well next Tuesday I will have finished my six weeks break from letrozole and will be decision day. With regards to bone pain, back pain, joint stiffness…there has been no change but my BP is back to normal on my original BP medication. The breathlessness has gone too. I had an ECG still waiting for the results. Anyway, the decision is going to be difficult. Do I risk getting a recurrence of breast cancer by stopping the letrozole or risk having another stroke by taking it? No-one can help me with this decision it seems. I’ve asked the breast care team and they say it’s my choice, my GP says she doesn’t know because it’s not her field. I can’t get in touch with an oncologist to help me with alternative treatments or whether to just take a chance with stopping. Heart problems and strokes run in my family so anyone here who takes letrozole, please don’t think this medication caused it. As I said previously, I had the stroke (which left me partially sighted) when I was 63. I was diagnosed with ER positive 8/8 HER2 negative…clear lymph nodes Grade 2 breast cancer coming up to my 70th Birthday just over 2 years ago. So please don’t panic and think the letrozole caused the stroke. If I hadn’t had one I would be happy to continue taking the letrozole and wish I could. I’m young 72 haha and would like a few more years even with all the aches and pains, that’s the truth. To Tigress, if you see this…did you have your mammogram yet, and if so are you ok? I’m thinking of you and hoping all is well and good. Take care and best wishes to everyone here too.
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Hi @lori06 yes, I had my mammogram (3/5) on Monday. It was the most squished my poor boobs have ever been 
BUT there was a radiologist there checking the images whilst I waited and she saw no change from last year so nothing suspicious. Obviously the protocol is that a second radiologist has to check and concur before I get the official letter but I’m taking that as all good. Thank you for thinking of me.
As for your situation, it’s something many of us struggle with as we age. I’m 45 - wait, no I’m not, I just think I am 
. Actually, in 9 weeks time, I’ll be 70 and am having a break from Letrozole to see if that is what’s causing the sudden downturn in my eGFR kidney function. I’ll know by the end of September. If it is, I shall stop the AI as it is preventative not curative and the thing that it is attempting to prevent might never happen anyway whereas the crashing kidney function is real and happening. That’s my take on it but I would never want to influence someone to do something, or not do something, that they feel uncomfortable about. Let us know what you decide.
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I’m glad all seems fine with your mammogram Tigress. Now I’m praying all will be well with regards to your kidney function. 
. I can’t make my mind up what to do and I’m getting so many different answers from the breast clinic. One nurse said it was ok to take letrozole every other day but another said no that’s not correct. I believe the latter. One said don’t take more than four weeks off but I saw on here that six weeks is ok so here I am at almost six weeks. I’ve finished with looking things up because I was just getting anxiety attacks the more I read and feeling anxious all the time is defeating the object of getting on with life and interfering with enjoying the things I was doing a few months ago. I’ve even stopped having my weekly ration of a slice of carrot cake with my tea due to health anxiety. I stare at my low fat oat biscuit and long for a custard cream or even a digestive biscuit. I do believe that 2 or 3 years of taking letrozole gives good protection.
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Oh good lord @lori06 - you’ve stopped your regular carrot cake? This has gone too far! 
. I’m not going to fess up to how many chocolate eclairs I’ve had recently but it’s a significant number. All joking aside, what is the point of going through all of this treatment if the little things that make life worthwhile are disallowed? The odd custard cream is not going to make your cancer reoccur.
Bottom line is, whatever each of us decides to do with regard to treatment is essentially a gamble. What works for you may not work for me. A good friend, who is now 76 but was diagnosed with Er+ BC at 60, stopped endocrine therapy after two years due to SE, with her oncologist’s blessing, and has had no recurrence 15 years later. I have taken Letrozole for 2.5 years but have spent the last 9 months taking it every other day with consent from my BC nurse (who checked with the onco) - ok it was just the third year check on Monday but so far so good. Whether these decisions would provide the same outcome for others is unknowable. The medics don’t know, the prediction tools don’t know, we don’t know - it’s a wet finger in the air gamble. For clarity, if the AI is not responsible for the kidney schmozzle, I’ll go back on to Letrozole but will not hesitate to take my chances if it is.
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Oh thankyou for replying. It’s made me feel a lot better and made me smile 
. I cut out the carrot cake because I was scared of my cholesterol going high…my husband said I was barmy but I never listen to him. Well I feel bad now for not believing the first nurse…my bad for trolling the internet. I will have some carrot cake. I just hope the oncologist (when I get the appointment through) will be able to ease my fears. Thankyou.
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Hi all, I’m new here and have found reading all your messages very helpful.
I’m almost one year on my cancer journey. I’ve had a mastectomy with absolutely no problem, chemo which involved 2 stays in hospital with an infection and then radiotherapy which went ok. I’ve now been prescribed Abemaciclib for 2 years and Anastrozole for 10 years. I have found the drugs worse than all that has gone before. Up until a year ago I was playing golf twice a week now I can hardly walk 100 yards because of fatigue. As I am 79 years old I have to make the decision on whether to stop taking the drugs, get a better quality of life and deal with the consequences or keep taking them and maybe extend my life. Thoughts?
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Hi @christie2 welcome to the forum, I’m sure that you will get plenty of support here.
Firstly, is it mainly fatigue that you are dealing with or do you have other issues such as joint or muscle pain? Fatigue is a well-known side effect of radiotherapy but, as with all other treatments, can affect people in an array of ways or not at all. Your messages seemed to suggest that you’ve finished rads quite recently and the fatigue can be really debilitating. For example, aged 67, I had the five day hyper fractionated rads with no skin breakdown whatsoever but was poleaxed by fatigue about three months later, which went on for 3-4 months. I still get the odd day or two of it almost three years later. If it IS due to the rads, it may well pass and be helped along by gentle exercise, as counterintuitive as that may sound.
If you think it is to do with either of the drugs, then you should really have a discussion with your oncologist about dosages and/or an alternative AI. I have no knowledge of Abemaciclib I’m afraid but possibly asking, if it IS because of it, whether the SE will pass once you stop taking it or whether a smaller dosage might be feasible. If you have any menopausal type SE including joint pain, then a discussion about a move to either Exemestane or even Tamoxifen may improve things (Letrozole and Anastrazole are effectively interchangeable).
The discussion, which we regularly have on the forum, about whether to give up the adjuvant drugs altogether splits opinion. It is very a very personal decision and should be taken in consultation with your oncologist. It sounds as if you’ll be on the AI until you’re 90, a very big ask. Has the oncologist gone through your Predict score with You? A word of warning, once you know you can’t un-know so a more generic conversation about the potential impact of giving up the drugs might be in order.
I hope this helps but others will be along to give you varying viewpoints and advice. I do hope that these SE can be got under control as quality of life is so important.
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Hi. Christie. I know how you feel. I was fine when I first started taking Letrozole but after a couple of months the pain in my joints and back was really bad. Getting up to go to the loo in the night (that was another side effect) felt like a long painful journey. Anyway, after a while it eased. Not everyone is as lucky but I did get some useful tips from this forum about supplements and taking the tablets at night helped a lot. I also gained some weight which was unusual for me because I’d been a skinny Minnie previous to the medication. I think the letrozole just hastened something I was going to get anyway because I’ve been on a break from them for almost six weeks and still ache (some aches are in places I didn’t know I had). I find walking helps loosen me up and I do know that some people have found acupuncture helpful. It’s a tough decision. Talking with breast cancer now nurses helped me. I was advised to do that by another member, here and she was right. Best Wishes.
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@christie2. I forgot to mention the fatigue. It wasn’t like a normal tiredness, more like exhaustion. I was warned that Radiotherapy could cause this but didn’t pay much attention until it happened. I got painful ribs too but that’s not all the time now. When you think about everything you’ve been through it’s no wonder you’re fatigued. It’s all the emotions as well as the treatment and you’ve been through a lot. Tigress gave me good advice and I see that’s she’s done the same for you. I’ve taken a few steps forward in my way of thinking. I’ve stopped feeling guilty if I have a nap after a long walk.
Thank you for your reply. I finished my radiotherapy back in April and was warned that I would feel extreme fatigue which I did for about 4 weeks but then I started to feel more like my old self which was great. Then I started the drugs and I’m now back feeling worse than ever. I’m seeing my oncologist next week and I will discuss what she thinks I should do. Obviously she can’t make the decision for me but maybe give me the benefit of her expertise.
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Just remember @christie2 that an oncologists job is to treat cancer over any other consideration. In order to do that, most religiously follow the NICE recommendations, as determined by your histology report. Do challenge the received wisdom, if you feel it is necessary, to understand your options. I also believe, whilst it is your decision and yours alone, that it is worth canvassing the opinion of your close family such as partner and children as either way it helps to have their understanding and support. Good luck with it all and, if you can bear to, let us know how you get on as you’ll receive nothing but support from us.
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Thank you x