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Rdc2022's avatar
Rdc2022
Member
2 years ago

Not take any hormone therapy medication…

I’ve just had a six week medication holiday as suggested by my oncologist as Anastrozole wasn’t agreeing with me; it was affecting my mood and mobility. I often felt stiff and achy and lots of other things. 
Anyway, I wrote her a long email explaining how I felt off the medication and what I hoped for going forward in terms of quality of life…. 
I ought to stress that I had stage one breast cancer with no spread to lymph nodes and the cells were grade one: my onc says my risk of the cancer returning is very low. 
She has suggested that I now go on Taximofen but she also gave me the option of not taking any medication at all. 
I’d love to know whether this is now becoming more commonplace and whether anyone has been brave enough to go ahead with this? 
She always says « we recommend », so I presume this is peer reviewed? I didn’t have time unfortunately to ask her for stats or studies backing this approach…
I will take the medication because I’d rather play it safe (I  was only diagnosed in early 2022) but I must admit I will be keeping her other option at the back of my mind (she also said we could reduce the dosage after another review). 
We are all different I know and I am aware this is a general forum, but I’m intrigued to know if anyone has been given the option of not taking hormone therapy medication and has done so. 

16 Replies

  • Hi @Rdc2022 ... It is interesting that your Onc has suggested Tamoxifen ... How old are you?  Have you gone thru Menopause already?  I thought Tamoxifen was mainly for pre menopausal women?  (Tamoxifen is the only one I HAVEN'T tried! I ended up on Anastrozole after not enjoying Letrozole and Exemestane - and my side effects are minimal - been on it for 4 years now!)

    Are you HAPPY with your Onc?  My first one was useless, so I swapped and I am very happy with my current Onc.  You could get a 2nd opinion .... where abouts do you live (state/town) ... we may have members nearby who could point you to another onc in the area (via PM) ....  You can add your location to your Profile.

    What sort of BC did you have?  Was it 'invasive'?  Did your Onc give you the % of likely chance of recurrence?  The lower the %, obviously, the better.  Stage 1/Grade 1 was a good result to start off with!! .... But as @Afraser iindicated - being on OR off the AIs is no guarantee of not having a recurrence  :(  And they still don't know WHY up to 30% of those who've had successful surgery/rads/chemo/tablets - goes on to develop Mets.  🙁   It is an area that needs massive investigation - examining the original breast tissue & then the Mets tissue - to try and find a connection - be it a gene or a virus ..... they just don't know!!! 
    The GOOD news tho, is that 70% DO NOT go on to develop Mets - and THAT is the bit too keep 'in mind'!!  


    Often it is the 'first AI' that you try, that gives the worst side effects .... so definitely worth considering a change in Meds & giving it at least 6 months to see how it affects you. Not everyone gets side effects on all of them.  

    Take care & all the best with your decision making xx
  • Hi - read your post with much interest. I have just updated my own Post regarding Rash I had with Arimidex. Stats are helpful to some extent and I made the choice not to continue with the tablets or an alternative. Informed that my type of cancer (early detected) after my 5 intensive days of radiation therapy had 2.3% chance of return if I remained on an anti-cancer drug regime, but given extreme side effect, by not taking them it was 3.1% !!!!! A statistical margin of 0.8%!!! Oncologist agreed with me. Food for thought and it is not always an easy decision whether to try a different medication.
  • Hello @Afraser… thanks for your wise words and I agree. I’m not playing Russian roulette… as you say, it’s tricky stuff. I just find it interesting that my oncologist has gone from telling me soon after I met her that I’d be on medication for 10-15 years to now saying I could choose to not take it. It’s a little perplexing.
  • Your oncologist is following a proven path given the specific nature of your cancer. There is no guarantee unfortunately with almost any treatment - just research stats that may or may not apply in your specific case, given age, general health, lifestyle and sheer luck. Unfortunately it comes down to your choice, not that you know any better than your oncologist but it’s your body and your oncologist probably can’t do other than offer you options. 

    It’s eminently sensible to try the new medication and see if you tolerate it better, before making any further decisions. This is tricky stuff. Best wishes for a good outcome. 
  • Thanks for your comment @June1952. I’d need a lot more clinical information before I would make that kind of decision. My main question is how common is it for oncologists to recommend no medication as an option? I don’t put medicos on a pedestal (I often disagree with my GP) but it’s harrowing enough going through a breast cancer diagnosis once, not sure I’d want to revisit it. 
  • @Rdc2022 you are not the only one who has refused extra many medications for whatever reason and many are still with us many years on.  The fear factor, or having medicos on a pedestal, often prevents us making our own decisions.  Go by your own gut feeling but be sure you won't have any regrets.