I wonder if there is anyone in a similar position to myself that can give me advice/their experience. I will have been taking Exemestane in April for 5 years. Before that I took Tamoxifen for 9 months. I have been cancer free since October 2006 after completing Fec Chemo and radiotherapy after being diagnosed in January 2006 with Grade 3 invasive ductal carcinoma 8/8 oestrogen positive. I have never had surgery. I believed that in April that I would have stopped taking any medication so was surprised when my oncologist said that I could take exemestane for a further 5 years if I wanted to. She could offer me no evidence to support taking it for longer and said it was my decision but said that if I pushed her then she would recommend me to stay on it. I now feel that I have no choice but to take it as I cannot play the “what if” game if I dont take it even though I do suffer side effects and was looking forward to maybe getting rid of these.
I cannot find any information/data on taking Exemestane for longer than 5 years as a therapy other than those suffering with metastasis/recurrence and would really like to hear from anyone in a similar position to me.
Thank you for your time in reading this and I would be grateful for any of your comments.
I have been told that I will need to stay on it for 5 years, after already taking Arimidex for about two and half years i.e. 7 and half years in total on AIs. I changed because of the side efeects and expected that I would be on Exemestane for 2 - 3 years, making 5 years total. I was grade 3, ER/PR/HER positive. The thinking now seems to be that for those of us with aggressive cancers staying on the tablets for longer is better. I would also prefer not to have to take them and had been looking forward to finishing later this year, but now I don’t want to take the risk.
I haven’t got to the 5 year mark yet but also had grade 3 aggressive HER2+. My onc has said that there is no benefit in her view for treatment after 5 years, so she stops at that point.
I am not taking anything at the moment as have side effects from everything, but am quite relaxed about it all. I work on the basis I could get flattened by the proverbial bus next week. I suppose you have to think will you ever get to the point where you will fee comfortable with not taking anything or will you always have a “what if” moment.
hi han i,m sorrry i carn,t help you with your question except to say that this seems to be a trend at the minute where a lot of oncologists are keeping people on these kind of tablets for longer if their cancer was a bit more agressive it certainly won,t harm to take them but unfortunatley there are no grantees in live that cancer won,t come back in fact people who have never had cancer such as we didn,t origianaly could get it no one knows but i would deffinatley give it a go
i noticed you are haveing side effects i have been on these for six weeks and am haveing very broken sleep i wondered if this was one of your side effects feel free to email me if you would like