5 years of Arimidex up...told to stop but terrified

Dear all,

I was dx 2004,aged 39, bilateral mx, radiotherapy,oopherectomy, tamoxifen for 11/2 yrs, then swapped over to Arimidex due to PE post op.
I have been taking Arimidex for 5 years, so am now due to stop it.

Thing is, I’m terrified of stopping it as very oes+++ and had no chemo as lymph nodes clear.
I tried to get an appt with Onc (haven’t seen them since 2006) so that I could discuss finishing it/continuing it/go onto something else. However, spoke to the onc secretary who said the surgical team could do that(ermm, they are not oncologists)and wouldn’t give me an appt.
I then spoke to the BCN when seeing her last week re;new prostheses and mentioned it to her. She said not to worry, she would email the onc(!) and mention it to her to get the go ahead to stop it.
The BCN rang me today to say new prostheses are in, and by the way, has heard back from the onc who said to stop it. That was it!

Is it me,making too much fuss, or is this the normal practice now?!
How do I know what the Onc said, did she make her decision with my notes,are there really no other options of other treatment or continuing with Arimidex?

I am petrified of coming off this drug and taking nothing- I’ve had a safety blanket all this time and now nothing…
Has anyone got any advice for me? XXXXXXX

Hello Happyshopper

When I last saw my onc I was told that they are doing a study at the moment leaving women on AIs for up to 10 years - and are monitoring the number of recurrences and secondaries compared with those coming off them after 5 years. I have one more year to go, but apparently they will be offering me the chance to continue with the AI when the 5 years is up.

In theory there is no reason why we should not stay on this medication for longer as long as the side effects are not too bad.

I don’t know how you are going to get back to see your onc - but perhaps you could try discussing this with your GP if he/she is helpful?
Good luck
Anthi x

Just wanted to add that my onc said at my last meeting with her that although there are no long term studies on the side effects that this group of drugs can have on the body, she was happy for me to stay on it …unless my dexa scan shows any marked changes. Well with the way my bones are aching at the moment I would be suprised if I got away with that one!! I think that it is our choice at the end of the day and I would be saying to the onc (in the nices possible way) that I wanted to continue and if there are no side effects then I cant see why not. The patent has now expired on them so it should be as expensive?x

Hello LancsLass and Anthi,

Many thanks for your replies.

Both of you mention the fact that there is a possibility of staying on Arimidex for longer, which has been dismissed by the BCN - no further discussion! This is exactly what I wanted to discuss…

I am feeling that this is not proper management, for her to email the onc rather than offer an appt to see the onc, with me and my hospital notes,in a room, and have a proper discussion about this - it is MY LIFE we are talking about…
In fact, due to this hospital’s seeming reluctance to give out proper appts (targets to meet I’m guessing) a mistake has already occurred (which may now affect my choice of being able to stay on this drug).
The story is, I was changed to Arimidex from Tamoxifen over the phone (by the BCN again!) when I queried the fact of whether I should be on tamoxifen following my PE (contraindication for tamoxifen- not spotted by any of the medical team except me). Off she went, spoke to someone, rang me back,ooh yes, need to stop tamoxifen and told me I was being changed to arimidex, no advice etc, no monitoring of bone mineral loss etc, just pick up your prescription from your GP.
GP said that I didn’t need Dexa scans throughout the 5 years of treatment- I insisted on one last year - guess what, now have osteoporosis. Turns out too that a dexa scan I had a year before starting Arimidex (when I had my ovaries removed) showed that I had osteopenia, despite my GP telling me it was normal and no treatment required and no further scans necessary.
I’m sorry to moan on, I’m just so frightened and angry that they are so dismissive of this, and something is going to go wrong again…
Am I being unreasonable to simply want to speak to an Oncologist, face to face, about this?
XXXX

Hi

No expert,and just a thought, but do you think it might be time for a brief letter to your oncologist asking for an appointment to discuss your ongoing management, in view of how ever many years have elapsed since you last had a face to face consultation? Is there an element of BCN gate-keeping? K.

Hi Happyshopper

I think we have a similar history re coming off Tamoxifen after PE’s in my case it was Tam for 2 1/2 yrs. I then went on to Arimidex and organised a DXA scan which showed a T score of 4.3. I had read reports of 2-3 yrs Tam followed by 2-3 yrs Arimidex being better than the original plan I had of 5 yrs for each. I therefore discussed this with my Onc and came off the Arimidex back in September after 2 1/2 yrs.

I was ER + and had node involvement so had chemo but I am actually relieved to be off the meds particularly with my Osteoporosis. However had I wished to stay on it I could have
I think you are totally justified in wanting a face to face discussion with your onc as you have been messed about already with changes not discussed.

It sounds as if your GP was not too helpful either so if you can’t get anywhere with the Onc perhaps andother doctor at the practice might be helpful.

I wish you the best of luck

Similar story from me, due a consultation with surgeon on Mon 25th and he wants me to stop Arimidex. I’ve been year and a half on Tamox and five an a half on Arimidex. All seems random to be honest. My GP is organising a dexa scan without prompting. Despite side effects I’d like to stay on. I had several er+ tumours and 12 pos nodes. I’m certain Arimidex has increased my chances of disease free life considerably.
Keep on until you get a really good explanation from your onc Happyshopper. Will let you know how it goes for me. Best of luck! x

Hi all,
Thank you for all your kind messages. I spoke to the onc counsellor today and burst into tears (didn’t realise how much this is stressing me). Told her about the situation, she seemed quite appalled and she suggested getting a second opinion with another oncologist, such as at the Marsden.
I really don’t know how to go about it, but think that it sounds a good idea(I’m in the SE).
I really do not think it is acceptable to not give me an appt with the onc to discuss this(not been seen since 2006), or for the BCN to ignore my concerns, and email them instead !
What happened to the patient being able to sit down , face to face, with a specialist(onc) and simply have the opportunity to discuss the pros/cons of continuing with Arimidex, the risks etc of continuing/not continuing,future management, discuss any concerns, etc, etc,…
Quite frankly, the more I think about it the more angry I feel - is this sort of patient management the “norm” now??? very sad state of affairs if it is…
Sorry to go on, think I’m having a bit of a day…
XXXXXX

Hi happy shopper I do so hear your pain and have answered some queries I think on another thread. It really seems like you need some answers and this might only be available via a 2nd opinion.
I got a referral to the Royal Marsden, admittedly in diff circumstances from my GP with no probs Hope you can do this too. Hugs J xx

Hi Libby 2010,

Thank you so much for your reply and I am pleased to hear that you managed to get a referral to the Marsden.

I have an appt to see my Gp in a few weeks and I am really hoping that he will refer me - hope you don’t think I am overreacting?

XXXXXXXXXX

hi happyshopper

as said before I am in a similar position -2006 lobular- I was given rads and arimidex.Also for 4 years I never saw an onc or consultant,just the normal annual mammo and prod around. Unlike you I was given bone strengthener also.It has not worked for my bones. August is my 5 year point and if still clear then my arimidex will stop(unless I really push for it which I not sure I want to)I will not be seen by onc then .Just the normal check and all being well ‘signed off’ from the hospital.I did see onc last year referred by GP because bone loss still continuing-Very much although he was very pleasant -I got the feeling that he felt I really shouldn’t have been referred to him. I understand that really-they are dealing day to day with really obviously very sick people with advanced illnesses and tho I don’t know if anything truly ‘lurking’ in me I don’t look sick.Should that point come sometime in future for me I like to think it would be,as at my dx before,all bells ringing and action.I think thats just the way it is, those in most need at any given point, get the most attention

Hi all,

Had to go and see the breast surgical team yesterday (found lump in neck-awaiting scan).
Saw a / locum dr (good continuity of care) who was talking into his dictophone with details of the last pt when I was shown in. Anyway,in short he said that I should stop the arimidex. He dismissed the need to see the onc and said I don’t need to see them as it would be wasting their time. I asked about wanting to discuss if there were any benefits to staying on it, was there anything else to take etc.
He shrugged his shoulders, said nothing and repeated that I could stop it now. He then read out a letter from the onc to the breast care team in 2006 which said that arimidex could stop in July 2009(!). i queried this, as I distinctly remember being told by the dr at the time that although I had had tamoxifen for 16 months before starting arimidex( I had PE and was changed to arimidex) I should stay on it for full 5 years.
So, although i have been seen many times at the clinic,NO-ONE has said anything about stopping this in 2009. And the GP still continues to prescribe it!
Worse still, he then turned to be and said “you’ve done well to get to 7 years”. That makes me feel even more nervous about stopping it!! How wonderful it is to feel so secure in my medical care…
AAARRRGGGHHHH!!! XXXX

“you’ve done well to get to 7 years” Whaaaat! I’m blistering mad for you. No wonder they have signs up in hospitals about not assaulting the staff. Letter of complaint listing everything and if no satisfactory response, ie, not apology, but what training they’re going to put in place to make sure this doesn’t happen again. If that doesn’t work then there must be somewhere else to go from here. Ombudsman? Press? MP? You certainly won’t be the only patient in your hospital to be treated this way. CAB may be able to help you draft a letter.

When you’re undergoing treatment it’s very difficult to complain as it can have an adverse effect, ‘troublemaker’ label etc but now you’re at this stage you’ve nothing to lose. Go for it girl.

Thanks hipchick for your comments.
i am feeling pretty down in the dumps at the moment about the comments from the doctor.
you’re right about the issues of complaining - I am concerned about the way this will affect future visits - I have turned into a mouse since my dx and treatment :frowning: XX

What a horrible situation for you. I have been on Arimidex for 6 months and was told that I would have it for at least 5 years. When I queried whether I could be on it for longer my oncologist said that there was some research showing that we could take it for longer and that I would prob have it for 8 years or so. It is definitely worth fighting more for this.

Sending you big hugs and wishing you lots of luck
Rachel
xx