Why I have decided not to take the Tamoxifen

oh Dawn honey, 

I am sorry. My comment has unsettled you, and that is so not what I wanted. 

I absolutely agree with you, though! You have made the choices which felt right for you at this difficult time. All I am saying is: I have made my choice for me - and I have come to a different conclusion for myself! - For now!

I don't think this is a competition as to who is braver, and who can deal with more! This is all about making the best choice you can make for yourself given all the info you have. 

My own concern really is just that even though we are talking maybe 1%, I don't have any other health issues, and so even the 1% I clutch at because it makes 1% of a difference. And so long as the side effects for me are okay, I am fine with my choice. 

That's what paranoia does to me! Got to laugh or cry! And I suppose, being up at 4am, and wondering whether we have really done enough, is a bad time all around. 

I do hope you got some sleep eventually. And please, don't feel you need to justify yourself here. It's all about sharing and caring - not about feeling pressured to have to explain your decisions.

Dorothee xx

Hi Dorothee,

thank you, I know we all make choices best for ourselves and it was kind of you to come back so fast, I do feel better now.   

Yep 4 am is a really bad time ha ha.  

It's good to have some healthy discussion about it all.   It is such a minefield isn't it?  

All the very best

Dawn xxx

Hi. Dawn hope you manage to get some sleep in the end. I don't know enough to comment tbh.but just wanted to say, good for you taking back control of your life. You always reply to our posts with help & understanding so thankyou . I was told no further treatment needed as well but have a check up tomorrow so will ask for more info on tamoxifen as wasn't offered it anyway. X hope you have a better sleep tonight

Hey again,

i have just gone across to have a look at the Predict tool. I have not used it. It worries me, tbh. 

It's a mathematical tool, which spits out percentages from averages. And it is based on a cohort from 10 years ago. 

My concern with this is that we are individuals, and we are human, and we are 10 years on in the development of Breast cancer treatment. 

Such a tool may give us a percentage. But, in the end, does that percentage add up to US as individuals? It gives us an emotional receipt, too: either we are panicked now, or we feel reassured by the low number. 

But, it doesn't spit out: DorotheeV I now guarantee you that you are 1% better off! 

We don't really get our very own, and our most wanted question answered: am I going to be okay?! 

And yes, i agree, a healthy discussion on these things is really useful. But then, when we are tired, and when we worry, we are vulnerable, and we are emotional, and then taking information on board can be very challenging - even the well-meant ones! It IS a minefield out there, and during bootcamp and tanning we are so not equipped to handle some of the info. 

Take care,

Dorothee xx

hi Dorothee, 

totally agree with you, we have to make our own minds up what we want to see and yes, it is across the board and not totally based on you as an individual as i said in my post.  We can all do so much within our own power.

but it is the exact same PREDICT tool they used in my consultation yesterday.

Dawn x

Hi Cathy

thank you for your lovely message.   i have had so much help on this forum over the months and hope that in some way I do the same for others.  i do have the best intentions.   

Brilliant that you need no further treatment, let us know what happens tomorrow. 

Dawn xx

Hi Dawn,

I think if I was in the same position as you I would have made the same decision that you have. I would have thought that having the bilateral mastectomy would be enough to prevent any further chance of breast cancer. 

I'm so sorry you lost your mum earlier this year and that you saw her suffer with some of the same side effects of Tamoxifen. It must be a very painful memory and if you are likely to be prone to them too then that is another reason to give the treatment a miss. 

I'm also sorry that after having the good news yesterday you had a sleepless night mulling over comments made on your post. Everyone has had different experiences along this journey with cancer and there are just as many opinions. I hope I didn't sound negative about your decision as I didn't mean to. 

I've been reading your posts and blog over the last few weeks and you come across as an intelligent and sensible person who does the research and weighs up the pros and cons before making any decisions and I think you have made the right one for you.

Although I had clear margins and lymph nodes I feel the LCIS is a ticking time bomb and wonder if I should have pushed for a mastectomy.  I don't see the oncologist until the new year so I will be reading up on Tamoxifen and be ready with all my questions.

Best wishes,

Mudge x

Hey there Dawn, 4am is a horrible time, isn't it?  I've been awake many times at that early hour worrying about stuff.  I am sorry that you have had this going around in your head.

Firstly, I wouldn't worry what others think.  You have made the decision for you, you've done the research, and you have done your best.  We don't know you at all - we are all more or less anonymous on here for a reason! - and so we can only give our opinions based on what little we know of one another.  

Secondly, refusing treatment does push buttons for some folks.  Personally, I see it as a bit of clawing back of control over the situation.  You are free to refuse whatever treatment you wish, and your team will work with you on that.  To be honest, I would have made the same decision you did, if I were in the same situation as you.  (My risk factors added up to much more than yours, and therefore I dutifully chug down my Tamoxifen every morning.)  

I have realised that cancer treatment is a numbers game, and that the balancing of benefit and harm is something which is integral to the process.  It's different for everyone.  You have been powerful and proactive, and have made a decision about your treatment.  That is a good thing.  

All the very best, and sweet dreams!  May there only be one 4 o'clock in your waking hours - the afternoon one.

I stopped taking it too.  I was also given a 1% difference, and also had a double mastectomy.  My reason for starting it was that if it became unbearable I would and could stop knowing that I'd given it a go. 

I took it for 18 months.  I was originally told that the maximum benefit would be in the first two years.  So when things got out of hand, I just said no more.  I don't feel that if it comes back it will be because I didnt' take it.  And like you there are more frightening things than dying.

Go forth and enjoy the rest of your life - I am!

Evening Mistymoley, Your reply is playing on my mind, so I have to ask..., it's on topic here, but it reads like it was it meant to be a reply to Racheal's new thread "Stopped taking tamoxifen early" 

Am I having a brain fart, or is this just a weird coincidence :-)  George & Jackie.