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]
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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.
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Click on a persons name, it will flag up “message”, then click that
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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.
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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.
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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.
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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.
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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
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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
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@JoanneN I totally agree with you. I couldn’t believe how negative some of the people have been to those that have chosen not to take or stop hormone therapy. I didn’t realise when I first read this thread that this topic appears to have been a very emotive subject for many years. I did a search on the forum and found other negative comments on other similar threads going back quite a few years.
Everyone has the right to have support and be supportive on this forum. No subject around breast cancer should be off limits. There is a sex and relationship thread that you have to request to join, I was wondering if the moderators could possibly consider setting up something similar for this subject. That would then make it easier to only have those that want support on the thread. @Bernard_BCN @LucyJ_BCN Thoughts??
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Take care Jo.
There will come a time when I will step away too.
As valuable as I’ve found these threads, it can also be a source of low mood.
I’ve put other ‘support groups’
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Pressed send🙄by accident. Fat finger syndrome.
I was saying I’ve put some support groups I’m in to sleep as I felt it was dominating my life.
All threads here should be a safe space, even if we disagree. We all have something in common here, otherwise you wouldn’t be here.
I don’t want to be here, and as lucky as I’ve been, I pulled the short straw one day. I’m just after non judgemental experiences.
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No idea where I’ve been but I have just noticed this thread.
I had a primary diagnosis in 2016 and started letrazole in 2017. I had horrendous side effects but decided to continue with it as my oncologist sold it to me as something that would prevent recurrence.
I took it for 5 1/2 years before some of my joint pain was discovered to be metastatic breast cancer. I was devastated and wished with hindsight I hadn’t persevered.
The one thing I didn’t realise was the effect it had on my mental health. Once the drug cleared from my system I suddenly saw clarity and felt the dark rain clouds disappear and I didn’t even realise they were there - scary.
So the moral of my story is that it may not necessarily affect the outcome oneway or the other if you take hormone therapy.
I’m sure I am not the only one this has happened to.
As lots of other contributors have said - it is personal choice/decision. Some people are prepared to live with unwanted side effects in the hope their cancer won’t return/matastisise while for others that is a risk they are prepared to live with for a better quality of life.
In my humble opinion there is no right or wrong it is an individual choice which should be respected even if it is not shared.
This thread has been insividuals sharing their experiences and the for and against argument and not any indicidual
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Trigger finger again
…not any individual trying to influence another is what I was about to type
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Hi,
I just found this thread. Are there other threads for people not taking AI’s? My Oncologist did the PREDICT model for me. It is only 1% difference if I take AI’s or I don’t. I am planning on staying on Exemestane until I can’t and then going ogg completely. My Oncologist supports this. Are there any support groups for people not on AI’s? Thanks
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I don’t know if any actual support groups for people not on AI exist. I’m a member of two groups locally and sometimes feel a bit odd being there because I’ve stopped taking it - I was on Anastrozole. My predicted benefit of being on it was very similar to yours in fact a bit lower - my Surgeon said it would be reasonable to stop if I didn’t get on with it and my Oncologist said to try Exemestane and if I didn’t get on with it to stop but the side effects got much worse after she discharged me which was when I stopped so she won’t know that I didn’t try Exemestane. It’s interesting that your Oncologist seems to be ok with you stopping if you feel you can’t manage on it anymore . It’s a very personal decision based on individual circumstances such as general health and medical advice / predicted risk and your own personal priorities . I only took it for 5 months I was getting joint pain and stiffness as well as hair loss and some problems with hot flashes . There is a history of rheumatoid arthritis and other degenerative MSK and auto immune problems in my family as well as osteoporosis and I have other health problems as well.
My 3 months DEXA scan showed secondary osteoporosis - as they didn’t do a baseline one on me I don’t know if I had this before starting Anastrozole or not but I decided that on balance I was safer without it . Initially I stopped it because of an event I wanted to go and enjoy but thought I might restart so then spent a lot g time considering it before I came to a final decision to not restart . That was 3 years ago now , I do experience a bit of anxiety in the run up to my check mammogram ( it will be in about 6 weeks ) but I think everyone does . I watched a really good podcast about it on YouTube I think with Dani Bennington and an Oncologist called Clare which should be easy to find if you search for Dani . In the end you have to make the decision that you can live with and it’s not one to be taken lightly xx
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Thanks. I will look for the podcast. I was offered Tamoxifen, but that carried a risk for blood clots and Endometrial cancer so we both decided I am better off without AI.
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Hi @jeannej if you have read my of this thread you will see if can get a bit heated, even thought the choice to not start or stop is your decision and generally in conjunction with a medical professional. As @JoanneN says I don’t think there are any support groups but I have met a lot of ladies who for many different reasons have stopped. Som completed 5 years and then were told they would benefit from a further 2 years and said no. It definitely not isolated.
Menopause and cancer link is on 18 June ( if you click on my user name and click my posts and scroll through, also a good BCN live with another oncologist 31 May.
Dr Claire Macauley is very honest about the subject.
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Yes I queried Tamoxifen as I have had retinal vein occlusions - it had been prescribed by my Surgeon . When I asked her my Oncologist agreed that it wasn’t suitable for me . Xx
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