I will have completed 5 years of Arimidex treatment in Feb 2011. (46 yrs old, bilateral mx for IDC, DCIS and Pagets disease right breast 2004).
I cannot tell you how frightened I am of having to stop this, despite having some of the unpleasant side effects(joint/muscle pains) along the way.
I was discharged by The Onc in 2006, back to the care of breast surgeon. I rang the Oncology secretary a few weeks ago to get an appointment, because I thought that I should be seen and reviewed by them as it is now 6 years since diagnosed, 5 years of treatment with arimidex(1 year of tamoxifen before arimidex) and I haven’t been seen by them since 2006.I was told that instead I should see the breast surgical team.
I am getting in such a state about this. I see a different doctor every time have gone to breast clinic.
I am terrified of coming off arimidex and not taking anything, especially as I wasn’t given chemo. I have read on here somewhere that some women have been told to continue taking the arimidex, despite having had it for 5 years.
i would really appreciate any advice. I don’t even know if it is worth seeing if I can get referred for an appointment/second opinion at the Mardsen or somewhere like that. This is not helping my ongoing anxiety!!
Thank you XXX
Hi Happyshopper
I don’t have the answer as I am a few years behind you, but someone must have advice for you. I think there must be quite a few out there with the same concern. Good luck Alice
Oh would be interested what is the outcome of your bc team
thank you for your reply.I will try and arrange an appointment with the breast care team to see what the plan will be - am quite tempted to leave it and just carry on getting the prescriptions to be honest - sadly i don’t think anyone would notice if I did…
XXXX
I’ve been on Arimidex for 6 years due to confusion at the hospital and, as you mention, seeing a different doctor every time. I’m not sure that the extra year has been worth it as I’m now very fatigued and having problems with my bones.
At the end of November, I pretty much had to persuade the hospital to give me a proper check up and as a result I’m now awaiting the results of a bone scan. I know how frustrating it can be when you can’t get any hospital team to want to take responsibility for you, but I think it’s worth trying to get them to pay attention and discuss the situation before they take you off the Arimidex.
Hope this helps. All the best for the New Year.
Roash
Hi Roach,
I am sorry to hear that you have had to endure problems in your care- why is it that some women have excellent care with proper surveillance, and others not?
I was concerned to hear that you had to persuade the hospital to give you a proper check up and that you are now awaiting the results of a bone scan. Is this a bone density scan, or another type of bone scan?
A few months ago, I had to insist on a bone density scan from my GP(the hospital said to ask the GP for one, she said I didn’t need one) as I read on this forum that some women were saying they were having density scans every 2 years, and I hadn’t had a single one all the time I have been on it.
Good job I did insist, - I have full blown osteoporosis in my spine and am finallly on treatment for this. Make sure they do this bone density scan and let me know how you get on.
XXX
Hi I am coming up to 5 years on Arimidex (6 years from diagnosis - (April) and was told by my oncologist last time that I would be taken off the drug as they have no indications that it helps after this time. I am really worried about finishing it too as I feel that it gives me some extra protection?
I have heard of girls being allowed to stay on it longer, do you think that it would be possible for them to put us on another brand of aromatose inhibitor?
I have a bone density scan every 1 - 2 years and am on biphosphates and ad-cal meds to protect my bones.
When I was due to go onto this drug Tamoxifen was the ‘Gold Standard’ so I don’t think that there are many of us on it any longer than 5 years as I really had to push to get it as it was so new.
I would be interested to hear of other girls stories.
I also have a supply of the drug to last another 6 months and will ask the oncologist if I can at least us up my supply.
x
Hi lancslass,
thanks for your reply - seems like we started Arimidex at more or less the same time then- i had a year on Tamoxifen after initial diagnosis, then got switched to Arimidex as i had a PE.
yes, i have heard of others staying on it for longer, so I am not sure about this option, or, as you have pointed out, onto another AI.
I feel very nervous about not taking anything at all.
With regards to your bone density LancsLass, could I ask you when you first had a bone density scan, who organises them for you, and were you started on biphoshates and Adcal because of osteoporosis?
Take careXXXX
I had my first bone density scan after 12 months, they said that it was just a precaution as I was on Arimidex as it does tend to strip the bones. I was osteophenic at first and that got slightly worse after my 2nd scan. I have had two of these and I think that they just use the information to monitor the bone loss. Have you not had any bone density scans at all? Just ask next when you see your oncologist. Its a really easy thing to have and you can read your own report afterwards (I was given mine) it did show a slight deterioration of my spine but they say that I might have got that anyway, and just by the fact that the Arimidex has helped to protect me I feel that it is a risk worth taking.
I was given the AdCal when I started the meds then when it showed a deteriortion I was given biphosphates, which given what we have all been through is a doddle.
Hi Debs,
I’m afraid i think that my management whilst on Arimidex has been more or less non existent, unfortunately, which makes me very nervous about my management once it’s 5 years are up in Feb 2011.
I had a dexa scan done in march 2005 when I had my ovaries removed (following dx with breast cancer in 2004).
I was told by my GP the results of the dexa scan was Ok and no treatment necessary. I was then started on Arimidex Feb 2006, and saw a different GP in Nov 2006, with joint pains etc. She commented that my dexa scan had shown that I had osteopenia. Concerned, I contacted the practice manager and was once again reassured by my GP that this was OK(even despite me having been started on Arimidex) and that I didn’t require any further treatment.
I have asked my GP on several occasions whether I should have a dexa scan, and each time she said it was not needed. However, I read on the forums here that someone who was on Arimidex was having dexa scans every 2 years, so this rang alarm bells with me and that’s what made me insist on having a dexa scan in August 2010, when i was told that I now have osteoporosis in my spine.
I then managed to get copies of both my reports(they weren’t given to me)and this showed that in 2005 my spine was T= -2.01(osteopenia), and in 2010 my spine is now T= - 3.1.
basically, my GP has let me have Arimidex for 5 years, and knowing that I already had osteopenia before even starting it, decided not to monitor my bone density, or give me preventative medicines.
In fact, my GP was reluctant to send me for the dexa scan in 2010, saying that they probably wouldn’t do it and I may need an xray instead to rule out small fractures in my vertebrae!!!
Sorry to go on, it’s just I am one very anxious lady!!
XXX
What a merry dance they have led you!! I think that I remember someone telling me that it can be repaired, perhaps you could ask you GP for some AdCal meds and biphosphates?
I too had my ovaries removed early on and I must be honest and say that I am feeling it in the old bones and ligaments recently.
I am due to see the oncologist in the next 2 months so I will post what he says as I have all my questions at the ready.
Good luck with your GP, I try to find out as much as possible about my treatment and then hopefully drive it forward as my GP readily admits that cancer treatment is not his area of expertise.
x
Thanks for that Debbie, you have been a great help and I would be very grateful if you can tell me what your Onc says.
I really think that I should be seeing an Onc as well, instead of the breast surgeon, as I feel that the subject of stopping arimidex and considering any other options should be made by an oncologist.
What a performance!
Incidently, what happens to others when they reach the end of their hormone treatment? Are you seen by your Onc or breast surgical team? I am feeling very anxious by it all…
XX
Hi it is definately your oncologist who you should be speaking to. I asked my breast surgeon last time and he looked mortified when I started to ask about the meds (it was the registra and not my main consultant) The oncologist was also the one who arranged my dex scans and appropriate calcium meds as well, (I have read a new report that suggests that taking the biphosphates can also protect the bones from any further problems, although I think that the trials are still at an early stage?)
Hi Happy Shopper I think we posted in a similar vein on another thread. I was put on Arimidex in July last year and my Onc sent a referral at the same time for a DEXA scan.I had this about a week later and about a week after that I had a letter from him advising Fosamax( alendronic acid) and Adcal D3. When I saw him again in Oct he said that in the light of new research his network were revising the criteria for biphosphonates and I was just about borderline for this drug. We discussed this and i am to think about it and we will discuss again when I see him later this month.Meanwhile when I mentioned in passing the need for further DEXA scans to my GP I was firmly told I could only have one if I paid privately.When I asked my Onc he said he would be referring me at intervals.Do you think cost could have had a part to play here? I know it shouldn’t and I’m sure the NICE advice is that ladies on AIs should have DEXA scans.
Debbie is the trial you mentioned the Azure trial?
Love Jackie xx
Hi Jackie,
Thanks for your post and I’m glad to hear that you seem to be getting the appropriate care whilst on this drug- in fact, your onc sounds really good and helpful.In response to your question, I’m afraid that yes, I do believe that cost has had a part in this. I am not sure if it warrants a complaint to the practice- I am very concerned that there are other women in the same situation who are not being monitored properly.
I have not seen my onc since 2006. i rang up the onc secretary to ask for an appointment, as my hormone therapy was coming to an end after 5 years, and that I was keen to discuss this further. The secretary told me, rather briskly, that I had been discharged to the care of the breast surgical team, and therefore I should book an appt with them instead.I just feel incredibly frustrated with this management, I think that the most appropriate person to speak to should be the oncologist, not the breast surgeon.
It really is incredibly frustrating, and extremely anxiety-provoking. I am really grateful to those of you who have kindly let me know what
their management has been. Please keep in touch
XXXXX
Hello all - I have just seen this thread, and it is really relevant to my experience. I realise I am late in responding and hope you don’t mind my putting my three 'pennorth in. I have been on Arimidex for almost 5 years, and I am absoloutely dreading coming off it. I have been luck and had no obvious side effects. I have arthritis anyway, so not sure if it has been worsened by Arimidex, as it is progressive anyway. I don’t know who I should talk to about staying on Arimidex. Where I live I just see the breast surgeon once a year, never see oncologist, as they are based 25 miles away. My surgeon never talks abot meds, just examines me. My gp agreed with me that there is no logical reason not to continue after 5 years. It is only prescribed for 5 years because that’s how long the trials are for. However, who will pay for the drugs if they are continued? And now that PCTs are being abolished, and GPs will be fund-holding, I should imagine they will be less likely to be willing to fork out. Has anyone out there got been prescribed Arimidex for more than five years? And who by? Would love to know.
Thanks for the post _ I’m sorry I haven’t been here for a while but have been off line for a few weeks -aarrgghh!!!
That is a very interesting point you raised Polly, about GP fundholders-mmmm… would like to think this won’t have any influence on decisions…
I have contacted the Onc secretary again and she insists once more that the breast surgeon will be able to stop the arimidex and that i do not need an ONc. I am not at all happy with this- what was the point of seeing the Onc in the first place, if this sort of decision is left to the greast surgeon? Nice though he is, he is on a mission to see everyone as quickly as poss in the clinic, and I want to be able to sit down and discuss this properly, and any other options, - I don’t think this is particuarly unreasonable!
Getting really rather anxious about this now - HELP!!!
xxxxxxx
OK, getting REALLY anxious now - am due to see breast surgeon in 2 weeks time (apparently It will be them who will stop the arimidex, not the oncologist).
I know the side effects have not been a bed of roses, but I cannot think of not taking anything at all.
i know this surgeon will just tell me to stop it, but I still can’t help feeling this decision should be made by an oncologist-HELP!
Has anyone either continued with arimidex after the standard 5 years, or been changed to another AI?
I have been on Arimidex since December 2006. I had a dexa scan before I went on it which showed I have osteopenia (-2.1) so my onc prescribed adcal and biphosphonates. Had a second dexa a year later which showed no change. A third dexa in 2009 showed -2.3. My osteopenia is due to undiagnosed coeliacs disease. I am to have another dexa this autumn. I am to see my onc after this and he will review whether i am to stay on Arimidex for longer than 5 years. He said in December when I saw him last that his current thinking was he would keep me on it IF my bones hold up. So we will wait and see. I am treated privately.
Happyshopper, it could well be that the state of your bones could preclude you from continuing with Arimidex?
I get terrible headaches on Arimidex which last all day and nothing will shift them. Probably about 3 a month. Very occasional vomiting too. Anyone else? The bone pains and aches that I used to get when I started the tablets have now gone, to be replaced by something I consider to be far worse!!!
Hi Happyshopper and all.
Understand your concerns and your anger at not being offered/given any bone density scan whilst on arimidex. Here’s my story for what it’s worth!
Dx sept 2006 WLE radiation for 3weeks arimidex prescribed for the 5years. Been on it now for 4 1/2 years.It was ILC with some DCIS.
In Feb 07 had dexa scan and it showed oesteopenia spine -2.3 hip -1.9.
Started taking alendronate biphosphate. Have never seen Onc since original dx until last month.At last years annual breast check with clinic they asked gp to arranged another dexa scan to see what happening with bones because of arimidex. Had one done and Dispite taking biphosphinates for nearly 4 years to protect bones,the loss had continued and is now oesteoporosis -2.96 and -2.15.I had (my mistake) been taking it with tea not just plain water which they say will cause absorbtion problems.Bottom line was onc happy for me to come off arimidex due to bone loss, if bone doc says so. Bone Doc(top guy apparently) checked nothing else and said milk/tea was reason for it not working,carry on with biphosphinates for 1 more year,will try to arrange another dexa then and see if indeed that was the reason.(who knows!)Arimidex i tolerate ok I think.I don’t have the obviously horrendous SE’s that some have had.BUT what I have very much noticed is the results of the small amount of oestreogen I did have, being taken out by the stuff. Skin and even more so, muscle tone has really gone now it seems in the last few months more so(acculated effect?).I know i am 4 1/2 years older but feel these aspects of oldness have accelerated the process considerably.Guess it’s very much a personal thing but for me, I have decided to stop arimidex 6 months early and stop probably the biphosphinate as well.ALL have said bone density will improve somewhat after discontinuing arimidex,by how much,who knows?I appreciate arimidex may/may not have thus far prevented a return of cancer, but for me it’s time to get back,just a small amount of oestrogen and hope that may be enough to halt or at least slow the enevitable effects of getting older.I think it is a difficult time,and feel a little out on a limb without the ‘reasurance’ of what arimidex MAY be doing on the good side,but it is a balance.It’s the very nature of the desease that a small ‘what if’ will always lurk in the back of one’s mind.In an ideal world, we would all be given thorough check,all over, and get told NED or otherwise, before discontinuing pills and have the best peace of mind that we can, but alas that not the case.
Hi All just a quick update.Not sure I am on the right thread but saw H shopper here. Had appt with Onc a week ago. ( This was preceded by appt with surgeon as I had all sorts of lumpy bits which I was fretting about and BCN said would arrange u/s but appt for surgeon came) Long story short had mammo and u/s 2 weeks earlier than anticipated all OK. But told still needed to keep appt with Onc as arranged for 2 weeks later. Discussed staying on biphosphonates despite being border line in terms of osteopenia and as I have no gastric probs will be doing this. I now have a mammo/u-s/ DEXA appts all around 2 weeks prior to surgeon appt next Jan-Feb 2012. The Onc and surgeon alternate apparently. Think my Onc may have retired by the time my appt comes around with him in 2013 will cross that bridge etc.
Seems I am very lucky but this treatment should be standard. Happy shopper so sorry to hear your probs.
And sorry this has gone off the theme of stopping Arimidex which I have only been on since last July.
Jackie xx