Tamoxifen - doubts???

Dear Sarah, I am sorry that when we first met on this board a year ago, I was not in a position to give you the friendship and support you sought. We were  both in the same State, both starting chemo and I posted to express my sympathy and caring for your situation, and you private-messaged me.

As I said then, it was kind of you to  offer  to drive hundreds of kilometers to take me to my chemo sessions each 3 weeks, and  to chat day or night,.But  I have a wonderful daughter who was driving me to appointments and was the person I needed to be with and while you needed a reciprocal relationship with someone, I was not able to be that person..

I tried to explain this gently, I did not intend to hurt you but as you can see on this thread, sometimes I am a bad communicator, I do wish you well, and hope one day you will find it in your heart to forgive me for hurting you by not being your special friend through this difficult time. And will let go of your bitterness towards me.

best wishes

Jessica

Hi Donna and Sue, thanks for your positive posts, and thank you for understanding that I am not telling anyone what to do, except to get the facts about their personal risk levels, and to discuss these  things with their own team of medical advisors. And to really think about the choices they make. Things that both of you and many others have done anyway.

I do not take Tamoxifen, because I am ER- so my surgeon said it is no use to me. Being ER- is a mixed blessing because ER+ would meant I had less chance of recurrence, so long as I took Tamoxifen. But my cancer is what it is.

And it is tough being in this club, all of us having to make tough choices, some of which we may regret later (like for me neoadjuvant chemo was a choice offered, but which my surgeon said would not change anything (except the size of tumor they would be removing) and would not reduce my chances of recurrence, but later I heard how it can shrink the tumor to nothing before surgery, which sounds like a good choice). 

As you say Sue, all of us with breast cancer currently have to live with a frightening increase in our chance of dying younger than we want. There are no guarantees. The facts are hard to take but without them we are in the dark. For myself, I think the biggest struggle is to face the facts so I can manage my  treatment/ongoing healthcare wisely but put them aside enought to  still live well and  to the full.

Jessica.

What a hot bed of discussion this is and open discussion is good isn't it, if it is framed the right way of course.

I agree with Sue we can not impose our will onto others and I do hope that no-one has had that intention. Sometimes when writing responses we do not realise that its not like talking, the intonations etc do ot come across and it can seem harsher than we intend.

As I stated in my earlier response I have found this conversation interesting becasue I have changed meds, will do so again and had mine extended to 10 years. I am very interested in what others have found in research and found through experience.

Have a lovely day ladies.

Donna

Ah that would be me that said adopting a healthy lifestyle helps you tolerate tamoxifen better. Perhaps I didn't express this precisely enough. I just meant to say that it helps me. When I let my exercise slip I feel older and my mucles stiffen up, when I drink alcohol my hot flushes become more intense and frequent, when I overeat I gain weight (and get depressed). Simple and basic stuff I know but paying close attention to these things, I believe, helps me avoid these problems - whether they are tamoxifen induced or just due to getting older. I certainly didn't mean to make anyone feel guitly. As I think I also said in my post suzie, we are all different and can react differently to the medication. The only way for Lynn to know how she will react is to give it a try. 

Hi Suzy, if you had a friend who asked you to make sure people were aware of the implications of their choices because she did not, perhaps you too would think it important to speak out as askedfor her sake and her kids' sake, to just put the story and facts out there,  It is about all I can do for her now, so I did it. If you don't want to read it, please feel free not to.

I totally support your right to make your own choice on this I totally agree that you are intelligent and capable of making a good decision. I did not say otherwise. Sorry if it sounds like I am on a soapbox. I just really care that this does not happen to others because they are unaware of the possibilities, not you but others who read this link and like so many including my friend, go off treatment because nobody ever actually said what the implications can be. I am devastated this has happened to her. 

Those standing on their Soapbox on this subject are simply not being helpful.  There is no crystal ball when it comes to cancer and as far as I know no-one here has a direct link to GOD.  

We mostly all know how to research medical journals and quote statistics.  Most of us are fairly intelligent women.  Most of us have had our talk with our Oncologist who are the ONLY people to seek advice from on this subject.  By all means tell us about your experience with these drugs as it helps us all understand how people react differently to these drugs.  I can't remember who made the comment that living a healthy life, eating healthy food etc enables you to tolerate these drugs etc but please - that is simply not true. Talk about inflicting guilt trips!

Most of us know friends who have mastastic cancer both on and off these drugs.  We are all different with our own physiology and we all react differently to drugs, especially these types of drugs. Some bodies reject them outright.  Many women suffer greater than others so please don't judge women who, after careful consideration, opt for quality of life and the statistics that support survival through happiness and contentment. If you want to quote statistics 50% of women who begin therapy simply do not finish.  If your system will tolerate these drugs then be happy about that.  But please don't try and make those of us unable to tolerate them unecessarily frightened!  It's not a sorority.

Those standing on their Soapbox on this subject are simply not being helpful.  There is no crystal ball when it comes to cancer and as far as I know no-one here has a direct link to GOD.  

We mostly all know how to research medical journals and quote statistics.  Most of us are fairly intelligent women.  Most of us have had our talk with our Oncologist who are the ONLY people to seek advice from on this subject.  By all means tell us about your experience with these drugs as it helps us all understand how people react differently to these drugs.  I can't remember who made the comment that living a healthy life, eating healthy food etc enables you to tolerate these drugs etc but please - that is simply not true. Talk about inflicting guilt trips!

Most of us know friends who have mastastic cancer both on and off these drugs.  We are all different with our own physiology and we all react differently to drugs, especially these types of drugs. Some bodies reject them outright.  Many women suffer greater than others so please don't judge women who, after careful consideration, opt for quality of life and the statistics that support survival through happiness and contentment. If you want to quote statistics 50% of women who begin therapy simply do not finish.  If your system will tolerate these drugs then be happy about that.  But please don't try and make those of us unable to tolerate them unecessarily frightened!  It's not a sorority.

I have read this post with much interest. I started in Arimidex and then moved to tamoxifin due to side effects.  Like the other ladies I started with hot flushes, aches, emotional issues, fatigue and sleeplessness and the dreaded cramps. I am 12 months down the line and I still have the cramps, I take magnesium for this and only get occassional breakthrough, my sleeplessness is still there but not as bad and I haved some body aches. These things are controlable.

My onc has told me I will be on hormone suppressants for 10 years not 5  I did question this and like Deanne my chances of reoccurance is reduced enough for me to go with her recommendation.

Cancer likes my body and its a tenent I do not want, along with BC I also had renal cancer so for me it was a no brainer. But I feel its good to research, be informed and make the decision that is best for you.

Good luck with your chioices

Donna

Thanks Deanne

Yes I have since spoken to a breast care nurse and she was wonderful and has sent me information to read on the benefits of the drug and also I am going to speak to my oncologist and find out my statistics on prevention for me versus the side effects.  

I am sure I will start the medication but I need to be informed because if I have an awful quality of life of them I want to come off them but with a lot of education under my belt to allow me to make this decision.

You sound very positive and seem to be living life to the full - good on you :-)

Thanks for your input

Lynn x