so an update; I am grade 1 stage 1 multi centric 4mm 7mm Bca no nodes, no lvi pni low NPi no oncotype as grade 1 mastectomy (no rads or chemo). Post menopausal er and pr positive
Quick summary - started on tamoxifen tolerated it really well for a year but grew a polyp (due to tamoxifen) had hysteroscopy but stenosed cervix so unable to remove and being monitored mri yearly just now all looks fine. So had to start on letrozole - a few months of trying it got quite bad so Surgeon took it to MDT for 2nd time to see if I could stop - MDT Onco said no but have a 6 week break.
Spoke with breast Nurse last week (she rang me) and we went through predict (V3 0.1/0.4/0.6 benefit over 5 10 and 15 years) not much difference V2. 96% survival with HT and 96% survival with surgery alone. (I appreciate this is just survival not recurrence as I haven’t had oncotype im not sure of recurrence %)
Breast Nurse knew I am slightly osteopenic after dexa scan ordered before starting letrozole. She wanted to go and speak to the oncologist herself. Got a call last week to say she had spoken to Onco and the Onco sees no benefit in me continuing and there is more risk than benefit in my case … so I have been told I can stop. Feeling slightly worried but slightly relieved if you can understand that. As mentioned if I hadn’t grown the polyp I would still be on tamoxifen as I tolerated it well. So I guess what I wanted to say is that there are so many different reasons why people stop and each persons circumstances are different and they all deserve support xxxx
Yes that’s quite true - we are in hole beings with problems other than cancer which all need to be taken into account. I’m glad that your BCN and now it seems your Oncologist are on your side. There is a bit of worry after stopping - but we all live with a little bit of worry I think. Mine tends to strike just before the annual mammogram xx
I just finished watching this and it was helpful . Xx
I am very interested in the idea of a support group for those who are not taking hormone therapy - for whatever reason (and there may be many).
I am interested in communicating with other women who have chosen this path. However, I do not like the forum situation - as it seems to attract rather vitriolic, emotional and heated responses from some people (as a general rule I avoid social media for this reason).
I have done quite a bit of research now now on the topic - as, at first, it seemed to be like a ‘no-go area’ and somehow stonewalled or blanked out generally on the internet. I think it about time women were allowed to/encouraged to have their personal experiences on this subject heard.
Could anyone sign post me to where I can communicate with women who have made thew choice not to take aromatase inhibitors - but not on this public forum?
Hi jayesse,
I like your posts and am interested in this discussion (doing without hormone therapy).
I stopped taking this some time ago - many reasons - and, as you say we have the right to choose.
Can we communicate by direct mail! I am not v good at all this IT stuff and shy away from public forums as they become battlefields of hysterical, emotional and personal insults.
We were considering having a group just for this that you would have to apply to join as yes we have had some issues with the kind of problem you describe - as you have probably noticed though it seems to have died down somewhat. Xx
I’m sorry that some forum users feel the need to be so negative towards this subject and that you don’t feel like you can get support on here. There are many of us who continue to support those who have chosen to stop.
If you wish to Private/direct message, click on their user name and click on the Message button, these messages can not be seen by the moderators. Some threads such as chemo starters have shared their phone numbers via this method and set up a WhatsApp group for support away from the forum.
The menopause and cancer podcast clearly states that 50% stop taking their drugs for many reasons and many don’t start at all and are not recorded.
BCN moderators and Community Champions do monitor posts for those that do not adhere to the guidelines. I don’t feel that the forum is like other social media such as X, generally it’s a very supportive place.
Personally I don’t know why it’s such an emotive subject to some as it is an individual choice as is all of our treatment. Why should others judge our individual decisions?
I haven’t stopped AIs but have ongoing issues and at some point if these continue I will have to consider stopping. I have spoken to my oncology team and have reviews every 2 months aswell as a menopause specialist about the pros and cons of AIs based on my predict score.
Take care
Hello everyone
I just wanted to let you all know that I have decided to stop using the forum for the time being, so won’t be contributing to this thread any more.
It may be that I start using the website and the forum a bit further down the line but for the time being at least I feel I want and need a break from cancer related reading.
I wish everyone all the very best and would like to say a big thank you to all of you who have added your very supportive and insightful comments and advice on here. You are all amazing.
With love to you all.
Take care @jayesse
Sending you lots of love @jayesse and if you want to voice something but not in a thread then please feel free to send me a DM . Xx
Good call. Understand completely and sending you my very best w8shes. Thank you for starting a really valuable thread whis has helped so many and will hopefully continue to do so. Love Tulip x
Thanks for starting this post. It’s been really helpful to me. I hope you get some enjoyable space away from cancer topics!
Much love @jayesse xx
Hi jayesse
Good for you. I’ll be doing the same soon, as a probable house move needs my attention and energy. (My partner has asked I stop doom scrolling too!)
There have been many, many helpful posts and I’ve 'saved ’ a lot to act upon, and yet haven’t found the time to, so probably never will. Many of your posts in particular chimed with my opinions, so thank you for the validation. Go, enjoy life. All the best, jayesse 
Hi @jayesse,
Please take care of yourself - the forum will always be here for you to come back to if that’s what you decide is best for you. And please remember that if you ever do need support or someone to talk to, you can reach our nurses on our helpline 0808 800 6000.
Sending all the love,
Alice
Ah Jayesse, thats probably a positive of getting back to living life as the experience fades into the background. Thankyou for all your invaluable input. I’m thinking along similar lines as had a ‘normal’ mammogram in the last few days - actually arrived on my birthday last Saturday (good present). You know when the time is right to put it all behind you. Have a long and healthy life x
I’ve just read this, late I know. When I was diagnosed last year I read most of the posts, but I only read occasionally now.
I am one of the people who was prescribed Tamoxifen, but after considering everything personal to me, decided I did not want to take medication for 5 years. I know I should probably have tried it at least, but I’ve never been a pill taker & just didn’t want to take it, against all advice.
I’m now 15 months post op & finished radiotherapy 12 months ago. My first mammogram came back clear, which was obviously a huge relief.
My age was the biggest factor in my decision not to take Tamoxifen, I was 77 a couple of days ago. I’m sure if I had been a lot younger I would have made myself try it.
Cancer isn’t on my mind all the time now, I eat healthily, am not overweight, exercise a little, don’t drink anyway, so feel I am doing as much as I can to stay fit. If the cancer comes returns I will just be one of the unlucky ones, & will have to deal with it, but hope it doesn’t.
Hi @balchik , am really glad you found this thread and hope it makes you feel less isolated. Either not taking or stopping an AI for all the many reasons discussed in this thread is a challenging decision but it is something a lot of us are having to manage. I think we all owe a lot to @jayesse for having the courage and awareness to start it.
Great to hear you are enjoying your life and cancer free. And Happy birthday!
Dear @ balchik, you may be interested in watching Dr Jennifer Griggs you tube video entitled breast cancer in older women - how does treatment change after 70 on yerbba.com. it is very enlightening! If I knew how to create a direct link to it I would but hope you will be able to locate it. X
Hi,
I feel the same as you re Letrozole. I’m not very good at this computer stuff - how can I get into this conversation with like minded people who are not on a public blog??