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Allicat's avatar
Allicat
Member
10 years ago

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.

tamoxifen

7 Replies

  • Allicat's avatar
    Allicat
    Member
    10 years ago

    Thanks Jdakic, I only just saw your reply. I got too nervous about coming off the tamoxifen even though it seems stupid to worry about 2% increase in the chance of dying. So, I'm back on it for now. I'll need to go over all the pros and cons again properly next time when I've had even more time to think about it.

    I like what you said about "going outside of stock standard treatment" - that's exactly it. If I go against even the slightest of their advice and then I got cancer again it would be so unbearable to think that maybe it was my fault. 

    My period came back today so now that will presumably need to be factored into any decisions. It is also extremely annoying.

  • jd48's avatar
    jd48
    Member
    10 years ago

    I know how you feel... I am het To have my Chemo and Radiation but Tamoxifen for 5 to 10 years afterwards is "on the board" for me too.

    Interesting thing is that when I spoke with the oncologist she suggested that by the time I was done with my 5 years of Tamoxifen vhance is that it would be only 5 as they would have more information and research completed by then as it appears that 10 is not making much if any difference than 5 but for now accepted oractice is 10...

    Having read about Tamoxifen and considering I will be having AC chemo and both carry increased risks of Uterine cancer which even though is not supposed to be hereditary does run in my immediate family I went the ither day to speak with my Gyno who is also a reproductive endocrinologist and very involved with BC as he is on the multidisciplinary BC panel at one of the major Sydney Hospitals. He and his practice do a huge number of research projects in womens health so I do trust him as he tends to years ahead of normal accepted oractice as he really keeps abrwast of lates wold wide research.

    He suggested there are alternatives to tamoxifen for those of us that have hormone receptive BC. You must be prepared to say 'bye' to fertility though but there are other meds that can helpshut down the ovaries andnaccording to him be just as effective potentially.

    He is going to consult my Oncologist and the team that will be looking after me to consider the best teatment for my particular situation.

    I know exactly how you feel wanting that "you do not need to take tamoxifen" advice. I went to him wanting him to say exactly that and then the moment he says it huge relief and now that it has been said rhere is fear and doubt if going outside of "stock standard" treatmwnt for BC I would not be making a mistake and risking it all come back...

    Hang in there I reckon, trust your gut and maybe, if you are really ready to let go of fertility, do have another chat with them and see what alternatives are there to stop the production of hormones.

  • Allicat's avatar
    Allicat
    Member
    10 years ago

    Thanks Jacqui. Good luck with your treatment, hope the hot flushes aren't too bad.

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    I've had the hot flushes since diagnosis 6mths ago. Am on Tamoxifen and there doesn't seem to be much difference to me. Still recovering post chemo so not all my bells and whistles aren't on deck properly yet any way.

    My Dr has recommended Tamoxifen for 2yrs, then review. I guess I will figure out what's next when I get there. I think the point of Tamoxifen is so no secondary cancers pop up which then enters you into life long treatment. If its a choice of the risk of that or take Tamoxifen for another 5yrs, 10yrs of forever, I think I would just take the Tamoxifen. At least while on it, I do get blood tests and checks for side effects like bone density. Who knows, in years to come I must just need an annual inoculation instead of pills every day?

  • jacquipp's avatar
    jacquipp
    Member
    10 years ago

    Allicat I understand what you are saying about not being able to say what you really want or need to at the time with the doctors. I am the same way and only think of questions later. It is so hard to take all this in at the time esp when they bring something up you hadn't thought of. It seems that you have thought about your decision for some time and have legitimate concerns for you. Maybe just take a bit more time to rethink things before actually stopping, but at the end of the day it is your body and you need to feel comfortable with what is happening. 

    Good luck with it all. I have just started Tamoxifen and am already having hot flushes so I know what that feels like. 

    hugs

  • iserbrown's avatar
    iserbrown
    Member
    10 years ago

    Hi Michele - I read your comment with interest about the aching bones.  I suffer from aching bones, gotta say I didn't realise they could ache so much!   I take Tamoxifen.  With regards to the aching bones, which are in my legs, I find if I get out of bed, as it is usually wakes me from sleep, and have a walk around it helps to ease it!  My Onc had suggested Panadol Osteo!

    We all have to be comfortable with our decisions and your awareness of where you are at will help you through this journey.  Look after yourself and take care

    Christine xx

  • mcoplick's avatar
    mcoplick
    Member
    10 years ago

    Hi, Allicat, I couldnt take Tamoxifen, it made me so ill, so I was then put on Armidex, which after 3 months, I then started with really bad pain in my bones, so I stopped this. Their is only one more tablet that is available to me, and I am not taking it, it is scary when you make the decision not to do it, but I am only starting to feel like myself again, after 16 months. So I dont want to take something that could make me ill again. I know my husband wants me to try it, but I just dont want to feel the way I have on previous tablets. My Oncologist told me that if this tablet doesnt work, then all their is to do is have tests to keep a check on things, make sure the cancer doesnt appear somewhere else. I had a complete hysterectomy last year, as the breast cancer I had was estrogen positive, and to prevent this returning I was recommended that this was the best way to deal with this.  It is all very hard, and the side effects of the tablets out way the benefits for me. I hope I have made the right decision, but it is out of my hands now. I am just concentrating on getting myself healthy.

    Michele