I was diagnosed in 2007 and had a mastectomy with two positive axillary lymph nodes, and I had a complete node removal at the same time as my surgery. At my 5 year check up my consultant, a professor, told me I would be taking anastrozole for life as research showed good results when the medication was continued after 5 years. The crippling joint pains stopped after 2 years helped by daily swimming, and I do have regular bone scans to monitor bone density. After two fractures I was prescribed alendronic acid but stopped taking it when I realised it could affect invasive dental treatment, extractions etc. I understand research with rats shows that tamoxifen taken at night is more effective as it interacts with the melatonin the body produces, and I wondered if anyone has heard if this could apply to anastrozole too? Good news, I am in my late 60s, and despite lymphoedema in my arm I swim a mile most mornings wearing a compression sleeve, and I have joined rambling groups and I walk about 40 miles a week!
well done JennyfromWales, you are doing well and exercise is always good for you whatever your age and even without a cancer dx - I am very impressed - I am very interested in any research concerning arimedex as I too have been taking it for 4 years now - and I have been told different things throughout my treatment. Initially in 2010 was told it would be for 7 years, then told it would only be for 5 years - it seems though that ladies who take Tamoxifen for five years can then go on and take Aridimex for life - and some ladies who are diagnosed stage 4 get it prescribed for life (or as long as it is effective). I am due to see my consultant in August and whilst I have one year to go on Arimidex (I think) I am quite nervous about coming off it and if I did get the chance to keep taking it I would do so. Does anyone know where I can find the latest research on this and what the up to date thinking is - perhapps BCC can help? I too have no side effects from the drug.
I was diagnosed in 2009 and was told when I went onto AI after ‘active’ treatment in 2010 that I would be on it for 5 years, over the course of the intervening years this then changed to 7.5 years and then 10 years. More recently, my oncologist told me in May this year that latest research shows that there is no benefit to taking an AI for longer than 5 years so she is switching her patients to 5 years of Tamoxifen once they’ve completed 5 years of AI. Furthermore, her opinion is that the risk of bone problems is significant and would also be a good reason to switch to Tamoxifen after 5 years. She did admit that patients who have now been discharged are not routinely reviewed as regards how long they take AIs. Therefore, if they were told 10 years or longer on AI then that is what they continue to do, oblivious to any new recommendations because they no longer have regular consultations with an oncologist. Therefore, with her agreement, I intend to arrange occasional case reviews with the oncologist after I am discharged in order to ensure that my ongoing endocrine therapy is in accordance with latest recommendations.
Of course, oncologists’ opinions will vary. After all, opinions are like noses - everyone has one!
Sorry I don’t have a link to the relevant latest research but would also be interested to know. Would also be interested to know results of any research about the best time of day to take AI/Tamoxifen.
I suppose the AI vs Tamoxifen debate depends partly on one’s attitude to risk. As far as I am aware, all thing being equal, the risk of bone-thinning with AIs is far higher than the risk of eyesight problems with Tamoxifen or the risk of Osteo Necrosis of the Jawbone with alendronic acid. Personally I don’t see any point in continuing to take an AI after 5 years if the evidence is that it’s no more beneficial as an endocrine treatment at that point than Tamoxifen. I am now 52 and the thought of experiencing bone-thinning and breaking a hip is horrendous. I take calcium tablets and regular weight-bearing exercise and my regular DEXA scans have shown no deterioration (beyond age-related effect) over the 4 and a half years I’ve been taking AI. In fact my oncologist believes the recent research which has apparently shown that Tamoxifen can actually reverse some bone-thinning.
Such a wide variety of advice isn’t there?I was dx in Nov 2009. I started on Arimidex , for. 5 years the following July (post chemo and post op) I last saw my Onc in Dec 2012. We discussed then how much longer I would continue on AIs… He told me that due to recent research he felt that given my node involvement his feeling was that I should continue for 10 yrs. Had I had no nodes involved he felt 5 yrs would be enough, with a few nodes involved he would consider, with his colleagues, but on balance he felt 8 yrs might be advisable. I was discharged from all f/up at that appt. I continue on alendronic acid and AdCal D3.my Dexa scans are supposed to be 2 yrly.
Hi Atat,
That was the original question, i wondered whether there was any research showing if arimidex was more effective taken at night, as some research has shown tamoxifen reacys better with the melotonin we produce when asleep. Reading all the replies has been really helpful and it has made me realise the best option is to check with your oncologist consultant/ professor at maybe 3-5 year periods. I will make sure I check again when (hopefully I will) I reach 10 years in 2017. I have been written off for annual checks due to cut backs in Wales… ‘get in touch if there is a problem syndrome’ 
I will book the appointment 6 months in advance o the NHS, and if there is a problem ring his secretary direct - good Dr Foster website has details. I do agree though that taking arimidex is very comforting as it has had good results.
All you ladies that had a few or all nodes removed, do be careful. My lymphoedema has flared up because my swimming costume rubbed under that arm and I didn’t notice as no nerves there. I do carry antibiotics and started as soon as i noticed the raied red patch about the size of a 50p. Skyped Dr daughter to show her and she has made me draw round it so that if it continues to increase another visit to the doctor will be called for.