Please can you tell me how to do a DM (is this direct message)? I want to join conversation about choosing not to take AIs - but not on public forum as some responses are too vitriolic
I’d like to join group - off public forum - to discuss decision not to take AIs.
[Moderator note: removed user’s email address to protect privacy]
Hi. Just to say that I feel it would be a great shame for this discussion to only be available privately. I have been following it as it’s a decision I am considering and I have found the ‘different voices’ very useful ( albeit the tone of some could be toned down a jot or two!).
I am clear that my emotional response is that no way do I want to even start on this medication, and that there are very rational reasons to support this. However I find that this thread reflects back my internal arguments in a way that helps me look at them from a little distance. It adds different perspectives which I think are essential to truly informed decision making.
My view is that this thread is a very important one for anyone struggling with decisions about hormone blockers and i hope it isn’t silenced.
Click on a persons name, it will flag up “message”, then click that
Hi @KTathome , the private thread wasn’t started in the end as so many people were benefitting from the open discussion. I hope it will work for you too and that you are doing ok.
To sent a private message click on the name of the person you want to contact and there is a button that says message. I have screenshot my page to help.
These are private and BCN can’t see them
I would suggest you edit your next post to remove your email for your own privacy.
Hi gabrielle1
I am pleased this topic has raised some interest as I felt very alone when I made the decision not to take Tamoxifen. I did not want to try to influence anyone else, but wanted to hear other people’s reasons for not taking them. I am definitely not saying that my decision was the right one, what I have said is it was the right decision for me, against the advice of my surgeon.
I don’t like taking medication regularly & no matter how hard I tried to convince myself that I should at least try the Tamoxifen, I couldn’t.
I’ve had a clear 1 year mammogram, had a swelling checked & both are fine. I’m healthy & fit, I do some exercise & am not overweight. I am 77 & for me, however many years I have left I want to feel fit & not reminded daily of cancer by taking medication.
I’m sure if I’d had been younger & felt the risks of a recurrence were higher, I would have tried Tamoxifen.
I really do worry about secondary cancer & hope whole heartedly that I am not unlucky enough to ever get it, I could cope again with primary cancer.
I don’t come on this forum as often now as I do find it depresses me a little reading how ill some ladies are & how difficult their treatment is.
I feel very fortunate that I had surgery, an excision, then 5 radiotherapy sessions & feel I coped well with it all & now feel good, apart from the odd bout of fatigue.
I will be interested to read how other ladies have gone on who have made the same decision as myself, which may be the wrong one, only time will tell.
Hello
I too would like to keep the points of view coming. I’m on threshold of having to make a decision regarding hormone therapy, and I will listen to anyones point of view before I make a decision. What I don’t like is a conversation that was thrust upon me. (surgeon) Did I know that they have side effects? (yes) that once upon a time the medics would give everyone medication as a matter of routine. If there wasn’t side effects I’d give it to everyone, but she (the oncologist) will go through it all with me. What in the name of flashes was that all about? If someone is going to say something, spit it out and get to the point, then you don’t go out of the consultation room with a confused state of mind. Was he saying you need to take it? Was he saying think about it? A leaflet was put in my hand as I left the building called letrozole and ‘they’ (medications) are all the same.
I don’t particularly like taking medication, but I would happily take paracetamol if I had a headache, but I think that’s a different thing entirely.
I did suggest having a private group as we were getting a lot of stick from a couple of people in particular who hold the opposing views . However on reflection I don’t see why this should need to be a restricted conversation - people who are or who have struggled with hormone therapy and have decided to stop or are considering doing so need a place that they can voice and vent . It’s not a dirty little secret or something to be ashamed of / swept under the carpet / pretend that everyone’s side effects will disappear in time . I don’t really understand why those holding an opposing viewpoint would actually try to participate in a thread like this as it doesn’t apply to them .
The main things to remember are not to try to influence someone else’s decision and to remember that everyone’s case is different . Risks of recurrence , risks to other as
Pressed send again too soon !
For some of us the risks of taking it may outweigh the potential benefits in various ways but everyone needs to make a considered decision taking into account as many facts as they can muster about their own particular case and their own underlying health and life expectations .
To be honest I’ve said everything I have to say about it all I think and I’ve said it many times over . I’ve said this before but I’m thinking I will step back from the forum a bit - it’s been 3 years for me now . I will be listening but I think it might be time to move on as after all this time I’m not sure it’s good for me to spend so much time here . Much love to all of you whether taking the therapy or not. Xx