Hi all … I was DX in Nov 2005, age 40 (grade 3, ER+/PR+, 4/14 nodes+), had surgery, chemo (FEC/Tax) and rads and have been on Tamoxifen almost exactly 2 years. A year ago I pestered my onco about the advantages of Arimidex, and he went to some length to explain that, at my age, I would likely not be fully menopausal for a while - and thus switching to Arimidex was not recommended. True enough, 6 months ago my hormone levels were inconclusive. But now, rather unexpectedly they are much improved and I am about to make the switch to Arimidex. Good news I think - but rather sudden. It sounds like my hormone levels will need regular re-checking, to be sure they don’t swing back.
I am wondering if there are many others as young as me on Arimidex - and how they faired on it. Has anyone made the opposite decision - to stay on Tamoxifen?Is it common for hormone levels to go back up again and have to switch back?
As I understand it, you have to be post-menopausal to be given Arimidex as it works in a different way to Tamoxifen.
I am 47 and was dx in March 2005. I was started on tamoxifen. I had been on the mini-pill for the previous 4 years and not had a period. Blood tests a year into Tamoxifen showed I was peri-menopausal (in laymans terms half and half!).
I was tested again at 2 years into the Tam and they actually rung me from Charing X (which scared me to death!!!) but to say I was deffo post-menopausal. My Onc had said if that was the case I would switch to Arimidex as trials had shown that regime was better at preventing recurrence.
As it happens I’m having so many joint aches that this is something I want to chat about with my Onc when I see her in August. I really need to discuss with her what the trials showed the difference is in percentage terms.
I would suggest a chat with your Onc so you know exactly why they have decided to switch you.
I was 50 when diagnosed. I was told I would have 2.5 years on tamoxifen and 2.5 years or Arimidex (or the equivalent). When I reached my 2.5 years of tamoxifen I questioned my oncologist about changing to Arimidex. He said they had changed their minds and I was to have 5 years on tamoxifen. I questioned why as I lost my periods after my first chemo and could see no reason why I could be considered pre-menopausal. I was told I was “chemo-paused” and just because I was not having periods it did not necessarily mean I was post-menopausal and that other parts of my body could still be pre-menopausal. Under these circumstances, they felt it best for me to remain on tamoxifen. Incidentally, they have never tested my hormone levels. I did ask about this some time ago. I was told that hormone levels change by the hour and there is no accurate way of testing hormone levels. I would be interested to know how your hormone levels were taken. I am seeing my oncologist in August and I may like to take this further with him. I had lobular BC, grade 2, stage 3b with 15/19 lymph nodes affected. I was ER+ and PR+ and HER2-.
I’m not sure what hormone levels mean here. Either you are pre or post menopause? I can’t put a web address on here but if you google ‘difference between tamoxifen and arimidex’ there is an interesting article that helps explain things at the top of the list.
As always, and I know I sound a tad cynical, you have to ask before you are told anything. For me the problem is that, unless I ask I’m not told anything, but how are you supposed to know what to ask? You assume that your Onc’s etc know best - I’m not convinced.
Frankly I find this BCC website far more informative and reading posts from ladies on here etc THEN I know the questions to ask.
The three hormone levels to have tested are your Oestradiol, FSH & LH. Oestradiol is the important one - thats the estrogen level. During menopause Oe goes down, and FSH/LH go up. The levels do vary alot however (and are affected by Tamoxifen itself), so more than one test is a good thing. My menopause is definitely chemo-induced, but I have all the normal menopausal-symptoms to back it up. I was told at age 40 I probably had a 50% chance the change was permanent. My blood-tests seem to confirm I was in that 50%.
Jeannie … perhaps your onco plans to keep you on Tam for 5 years and then switch you to Arimidex? Apparently there is mounting evidence that up to 10 years of treatment is beneficial (according to my onco). Also - there may be other reasons why Tam is right for you - given your diagnosis, or other prevailing health conditions. Your onco really should explain this however.
Personally I wanted to know my hormone levels regardless - so I could keep an eye on them. I felt my ER/PR status was really my “ACE-card” in my hand (then only remotely positive factor of my diagnosis), so I am determined to look at every option.
I think you could arrange a blood/hormone test through your GP if you wanted one.
Hope this helps!
Thank you for being so helpful. My BC was 100% ER+ and PR+ therefore I feel I would like to know a bit more about hormone levels. I’m going to take this further with either my GP or Oncologist. Were you 100% ER+ and PR+?
As regards to my treatment - I have now been told I have to stay on tamoxifen for 5 years and thereafter have 3 years on femara (or the equivalent when the time comes).
Hi Jeannie … I wasn’t quite 100%, but I scored 7-out-of-8 (both ER & PR). I sounds like your onco has already made the decision to extend your hormone therapy beyond the 5 years, perhaps because of your stage (and your 100% score). In which case he doesn’t want to switch you too soon to an AI drug. That makes sense.
In my case, with a grade-3 tumour, the early years are perhaps more critical, so the sooner I get onto the AI the better. And right now, I don’t think there is any plan to extend my therapy beyond 5 years - so this way I get the benefit of the full three years of Arimidex.
Never-the-less, it does no harm to know your own hormone levels. I feel a little better simply knowing what my hormones are up too.
I think I am similar to you, in that the suggestion is I switch to something else after 5 years of tamoxifen. Diagnosed at 46, I am now approaching 50. Having read about Arimidex after 3 years I asked my oncologist about this, but was told ‘only suitable for post menopausal’ and they didn’t think I was. On reflection I should have asked more - no periods since chemo, and they never check hormone levels so how were they so sure? However as it means I will get extended hormone therapy I am not complaining, as Angilbert above says, it makes some sort of sense.
I was dx in Feb 06 at the age of 44 and had a matectomy and lymph node clearance. I had multi focal breast cancer grade 3 and 3/12 nodes involved…6x FEC and 13 rads.
I was put on Tamoxifen but after my first check up…6 months later my breast care nurse suggested I have a blood test to see if I was post menopausal as Arimidex would be good for me. Blood test showed I was and put on Arimidex after 6 months on Tamoxifen …that was a year ago. By the way, my periods stopped after first chemo and haven’t come back.
I’m very confused with when Tamoxifen/Arimidex is prescribed…I wonder if as someone else said…grade 3 benefits more from taking Arimidex earlier…help!!!
Angilbert - I would like to know what you mean by an A1 drug. If Arimidex is A1 what is tamoxifen? I would also like to find out about my hormone levels. I popped into my GP surgery today to ask if they did hormone testing. The receptionist said she did not know and suggested I phone the Practice Nurse tomorrow. I will post the outcome. If I don’t get satisfaction with my GP, I will ask my oncologist. It feels right to know a little more about hormones. Particularly when I know it was the oestrogen that was feeding my cancer. Many thanks - your help is much appreciated.
Sarah - you do sound similar.
Now this may sound mad but I’m thinking why not give us tamoxifen until they are sure we are post-menopausal (test our hormone levels) and if we are, give us Arimidex for the remainder of the 5 years. Thereafter, have three years on Femara or something similar. I’m wondering, if Arimidex is so much better than Tamoxifen why we are not being offered it when there is a good chance we are post-menopausal. I would hate to think it was something to do with money.
Sheana - it is confusing. My oncologist would not suggest Arimidex until he was certain I was post-menopausal. You seem so young to be post-menopausal. However, I’m sure they have a valid reason for putting you on Arimidex.
Hi Sheana … I’m sorry if I alarmed you with my grade-3/Arimidex comment. If you google for it, you will find some evidence that suggests grade-3 patients (amongst other groups) might benefit more from switching to an AI sooner rather than later, but only because we are at higher risk of relapse in the early years.
I am pleased to hear that at least one other 40-something has made the switch. How have you found it?
Jeannie… By AI - I meant “Aromatase Inhibitor” - I just couldn’t remember how to spell it!
You didn’t alarm me…don’t worry! I have found Arimidex difficult to cope with at times…meaning, the aches and pains, headaches, lethargy and weakness, headaches etc…etc…but I think and hope it will be worth it to stay disease free. I am just over 2 years since dx and…touch wood…doing well. When I saw my oncologist in March, he said that they are very pleased with how things are going…so, who could ask for more than that.
I do get down days when I worry about cancer coming back but I also get days of not thinking about it at all. From what I read on here, I think I’m pretty much par for the course.
I’ve asked a question on here about multi-focal cancer as that is what I had. I rarely see or hear it mentioned so wondered how many others were in the same boat as me. No replies so far!
Jeannie … just to confirm - it is just a blood test. Nothing more invasive than that.
There does seem to be a big grey area between pre and post menopausal, which is further confused by the fact that chemo-induced menopause is a bit of an unknown. So “being certain” about your status is not that easy - especially if you are still quite young. I’m guessing that in a decade or so they will understand this alot better - and exactly who benefits most from switching to Arimidex, and exactly when (not to mention what the long term risks might be). In the meantime, there will be differences in opinion and in treatment, especially since most oncologists will take consideration of a patients own feelings when making a decision. This does mean some variations will arise - not necessarily anything to do with money.
I hope you have success at the GPs - we can compare hormone levels when you have them.
I was dx in Feb 07 at 44. I haven’t had a period since half way through chemo. My onc’s plan for me was to have two or three years on tamoxifen, then switch to Arimidex for the balance of the five years if I was definitely menopausal by then. I had read that this was a good course of action, so was happy with this.
Then I read of new research (San Antonio breast cancer symposium Dec 07) that said that as the likelihood of recurrence was greatest in the first three years, this was when Arimidex had the most benefit, so I asked to have the blood test to see if I am truly menopausal, as opposed to some chemo-induced temporary state, and then switch to Arimidex. It seemed stupid to be switching after the period of most benefit was already over.
However, as with everything else to do with BC, the answer is never straight forward.
Firstly although my blood test showed that I am menopausal, it came with a warning that there was no guarantee that this was a permanent state. Because it is chemo-induced, there is a possibility, however slight, that this could reverse. The answer is to have further tests over time to establish a pattern of results - this of course then eats into the critical three year period.
Secondly, the registrar I spoke to was concerned about giving Arimidex to someone my age. Whilst tamoxifen protects the bones, Arimidex has the opposite effect, and mid-forties is very young to start having bone problems. Assuming I am going to survive all this, she didn’t want me to end up with a life time of problems, when tamoxifen could have done the job without these problems. And of course tamoxifen has been in use for many years, so long term effects are known about, whereas AI’s are relatively new, and who knows what effect they will have thirty years down the line. But then my short term survival is more likely on the Arimidex.
It seems we are all stuck between a rock and a hard place. We are all guinea pigs to a certain extent, as while these new treatments give better results in terms of survival, there is no long term data on their use on younger women.
Hello RoadRunner - many thanks for your well researched thoughts. You echo many of the comments my onco made 12 months ago. Have you decided yet what you will do after 2-3 years? It is a tricky decision.
Just wanted to let you know the call I made to my GP surgery today went well. I’m going next week to have my blood tested in relation to finding out my hormone level.
Angilbert - I will ask for a copy in order to compare notes.
Angilbert - I will go with whatever the onc suggests, which I suppose is a switch after two or three years. Fingers crossed I don’t get a recurrence before then.
HI everyone - I have just had the Arimidex v Tamoxifen conversation with my onc today. He thinks that I am post menopausal (hormone tests, no period since January and hot sweats - I’m 48). However, he did say that sometimes the ovaries are just “sleeping” after the chemo. He has put me on Arimidex (mostly because I will be doing lots of long haul flights), but said that if I get a period or stop getting hot sweats I will have to stop it (can definitely only be given if post menopausal). Good luck everyone - have just been reading about potential side effects including thinning hair (that’s funny - went out today for first time without wig!!) and lack of co-ordination or tiredness when driving - hope not as I’m not the most co-ordinated person in the world at the best of times! Good luck everyone. Sarah.