How long on hormone blocker medication

@June1952 my oncologist reminded me that I have had all the treatment for the tumour for which the pathology showed was HER2 positive, and that is the one that is more likely to kill me if it returns.  She didn't use those exact words, but that was the essence of her conversation with me.

The other tumour I needed 5 years of AIs and not chemo!  We have to look at the whole picture, and yes try not to have any regrets.  

You are so right @Keeping_positive1 - we are told to make the decisions and we do.   I think most of us do our research, decide what is somewhat acceptable and then go by our gut feeling.  We just have to hope we have no regrets in the future.  Some women will still get a recurrence and some who stop taking the drugs never get a recurrence.  Never black and white.  There are no guarantees.

I stopped AIs at four years and had breaks in between.  My oncologist told me to stop due to side effects that were exacerbating comorbidities either I had/have or was caused partly by the AI.  Often drawing the line to what contributes to some declining health issues is a clear as mud in my opinion.    

Decisions we make can feel as if we are in between a rock and a hard place.  All I can say is try as best we can to be at peace with the decisions we make. 

Thanks for that @Mez_BCNA, you have said it - 'for some women' seems to be the theme.  The problem is that no-one can tell us which women will benefit and who won't.  There appears to be a variety of knowledge level and opinions from specialists and this can even vary between State, cities and regions.  Please let me know if you feel that I have lacked respect in my posts.

Hi @Chris51,

I thought it would be appropriate to share BCNA's information on the subject of Hormone Blocking Therapy that can be found in My Journey article https://myjourney.org.au/article/2203 (A snippet of the information below):

If you didn't attend last nights session Ask the Expert: Managing side effects of hormone blocking treatment with Dr Michelle White, the recording will be available in the coming days.

The extended time to 10 years for some people taking hormone-blocking therapy has been a consideration for some time. The decision to continue after 5 years is based on individual risk of recurrence according to diagnosis and is a discussion between the person and their oncologist. Part of that discussion would include what side effects the person is experiencing, how well they are coping and how the side effects are impacting their quality of life. 

Just a friendly reminder for all members, while we always encourage you to post your comments and own experiences to support others. Please consider your posts carefully before responding and ensure that you are maintaining respect. Treat others as you would like to be treated yourself.

Goodness - I must be so lucky to have had so few side effects form Letrozole - this only makes a little more concerned about swapping over to Tamoxifan. Fingers crossed that my next bone density has stabilised so that I have a stronger argument for continuing on Letrozole although my oncologist is certainly expecting there to be further deterioration. My spine was OK bur hip was in the lower ‘yellow zone’. This time also having my wrist measured as oncologist says often arthritis in spine can mask deterioration in bone density. It appears that we all have very different side effects and thus opinions - also medicos seem to vary in their opinions and treatment. All makes a little confusing for we patients.

Hey @Afraser, I don't read anything about a competition here.  As you said, there are differences in what one can and is prepared to do. Obviously your side effects have not impacted terribly on your enjoyment of life.  Some members struggle to undertake any day to day activities, however much they try.
I agree with @BlackWidow re the chemical companies not doing their best to prevent or minimise these side effects !!  It is a case of "shutting the door after the horse has bolted".... and line their pockets further.

@BlackWidow
I have lymphoedema, peripheral
neuropathy, vaginal
atrophy, reduced bone density and an arrhythmia. I didn’t know it was a competition! There are simply differences in what one can and is prepared to do, and the reasoning behind it. 

@Afraser, as you regularly tell us, you are the queen of the BC treatments having been able to work through chemo and having few side effects from Letrozole.
Had you not been so fortunate you may not have believed a word of that research or the oncologist's recommendations.
Once these medications badly affect one's lifestyle in relation to bones and heart as with @Cath62 (above) then we have to make tough choices - regardless of the money we pay.
As the chemical companies know all these side effects why don't they add ingredients to prevent or minimise them ?  Oh no, better to make extra medications to make them even more money at the patient's expense.

I have been a big advocate for hormone treatment however the side effects I have experienced have me wondering if the benefits outweigh the risks. 20 months on tamoxifen and I gained weight, felt mood changes and found walking hard because of fatigue and breathlessness. I spoke to my oncologist about my side effects and all of a sudden I am off them for a 5 week break to see what happened to me. Well u feel fabulous, energy back, no breathlessness and no mood issues. I have an appointment with the oncologist on 11th July to discuss next steps. Cant go on AIs because of joint issues. She did flag tamoxifen at half strength but it will be a discuss. Scientists research indicates that tamoxifen has a 50% chance of bc not coming back and AI only another 1 or 2% better coverage. I have to weigh up if 50% chance side effects are worth it all for another 3.5yrs. If tamoxifen is effecting my heart with increased pulse and breathlessness and struggling to walk i am not sure. Anyway I will engage in a serious discussion with the oncologist to decide.