Stopping Tamoxifen
Today is 5 years and one week since I started taking Tamoxifen. It was to be for 5 years but then they said it is better to take it for 10 years. At my appointment 6 months ago the doctor put my details into some program which said taking it for another 5 years would improve my survival changes by 2%. She thought this was significant but I do not, and we left it that I would keep taking for it up until the 5 year mark and then see. Today I had another appointment and I said I would prefer to stop taking it due to concerns about it being bad for bone health as well as for bad for general bodily well-being and causing hot flushes. The doctor I saw today said it was up to me and so I have decided to stop. But it is a bit scary - this is the first time I have not just gone along with what the doctors recommended.
I didn't clarify whether the 2% was for the next 5 years or for my whole life. I think it was over my whole life.
I'm not sure what is best to do. I want to stop but it is a big decision. I have the yearly DEXA scan for bone density and it shows osteopenia (ie weakened bones but not as bad as osteoporous). I don't understand why they do these tests and tell me these things and then say 'well you've got weakened bones but it doesn't matter and we're not going to do anything about it". I saw an endocrinologist a few weeks ago about my bones and she was basically just saying we'll wait and see. There was some medicine she could have given me but she didn't want to because it would be bad for my fertility. I was too startled by this to properly point out that I thought we'd already decided that my fertility was done for in the treatment plan decided on 5 years ago as nobody could say whether my period would come back. Today one of the doctors said that if my period does come back (due to finishing triptorelin 6 months ago) that I'd have to either have my ovaries out or go back on injections to stop it again. So, obviously my fertility is not of concern to her.
Anyway, fertility is not one of my concerns either. I should have said that to the endocrinologist but I wasn't expecting that angle so wasn't prepared for it. I am also terrible when I'm with any doctor and always forget to ask the proper questions or even if I do think of them I get too nervous to ask and just go along with whatever they say. Sometimes I come out afterwards and it is unbelievable to me that I didn't protest about a certain thing.
Today I actually wrote my questions down and asked more and put forth my opinion more than usual. Probably the most I have ever done. Still feel uncertain about the doctor I saw today understanding and having the authority to agree to me stopping - it was just the registrar and I hadn't met him before. I prefer seeing the same doctors who have seen me before but due to scheduling I ended up with this registrar. It's funny, because I went along this morning wanting to persuade the doctor that I could stop tamoxifen and he agreed and now I'm worried.
He said the side effects of tamoxifen were just muscle pain, joint pain and hot flushes. Of those I only have hot flushes but I think I need to investigate the list of side effects more closely myself. It is annoying how when you see different doctors they say different things as I'm sure other doctors have said things like generally not recovering from any injuries or setbacks as well as you would without tamoxifen, and this is what I am concerned about. Also, the hot flushes are going through a bad phase at the moment but that might be due to stress from being very busy at work the last few months. It is hard to know what causes what sometimes.
I have half a bottle of tablets left so I might finish them as it seems oddly abrupt to just stop today after 5 years of every night making sure to take it. While doing this I need to find out some more facts to understand what the pros and cons are.