Hormone therapy struggling in 4th year

I did try to change my medical oncologist in 2020 but there was a wait of over 5 months according to my GP. I am appalled that she behaves in a far less dismissive manner if my husband is present at the appointment. Not good enough!! Maybe I will try again to change. Otherwise we could have another 8 years together. 😳😆
Strength and respect to all of us on the AIs and those approaching their finish, I’m amazed and salute you. Xxx

Hi Silvergirl
Like you i am in my 4th year as well with one to go. Countdown has well and truly begun! I also have copped a fair bit with side effects despite being very active exercise wise. I am currently on my drug break from letrozole and still waiting for a lot of things to ease. Some take longer than others like all the joint and muscle issues. I also have the added problem of low thryoid activity, hereditary, and would explain a lot of what i have experienced in the last 12 months alone. Couldn't figure out why things ramped up 100 fold. When i see my GP this week I'll find out whether i need to be on meds for it and if i do I'm hoping my last 12 months won't be as horrendous. I finish in November next year and would like to be able to take the last 3 months off but i don't know if my body will let me last that long as i usually take it off from June.
Think about taking a 2 to 3 month stretch off in your final 12 month peroid. It's more effective than 1 month as it takes round 6 weeks for the drug to exit from your body. It's after that period of time that i see actual improvements in my body movement, sleep habits etc.
Best wishes Cath

It is important for medical professionals to acknowledge what patients are experiencing even if they are powerless to do much about it.  I think many of them refuse to do so or brush it off because to admit it, is too difficult for them.  A perfectly human reaction, I guess, but one which many need professional development with.  In the end, it is my choice to continue with the AI.  But it is my oncologist's job to recognise and acknowledge the side effects, record them, discuss them, and try to assist in finding ways to help me manage them.  As I have said in the past, I have been very happy with my oncologist on this front - he recognises the issues but is also very open in admitting the limitations of current treatment in this regard.  We're all hoping something better comes along but just because this is all we have, doesn't mean that it is okay for medicos to pretend all is rosy.  To refuse to see the problems, is to deny acknowledgement of the person who has them.

@Silvergirl  - WELCOME TO THE BLOG (that no-one really wanted to join!! :( )  Yes, you can only 'complain to your friends' for 'so long' before they get that 'glazed look' in their eyes - Oh Here she goes again ..... so I rarely mention my aches & pains any more ...  I try to remain as active as I can (tho I hate walking - mine is mainly kayaking ....)

Great that you got help from your psychologist .... cos it really DOES muck with your brain!  And that Damocles sword hanging over your head re recurrence .... never really leaves either!  :( 

I keep reading that some Oncs are even recommending just continuing with the AI treatment, even beyond the recommended  5-10 years ..... I'll decide that when I get there!!

@Temple - I had a prat of an Onc like that early on too - and changed Oncs.  I now have a lovely female Onc (who is treating both my husband and I) and she is VERY receptive & sympathetic to our side effects (particularly the major ones) & is very active in trying to abate them.  She immediately changed me to a different AI & 6 months after that, to another one again.  I understand that she also had cancer earlier in her life - so understands it so much better than those Oncs who are only parroting what they've been taught, read about or been told by patients.  But it is pretty obvious that your Onc is not listening to you .... so you really should look at getting someone who is 'on your side'.

All the best to everyone xx

Hi Temple, I know what you mean about feeling you're the only one, a friend was diagnosed with BC, had a mastectomy, chemo now hormone therapy, she defiantly gets it, other friends can only sympathize.
 I tell them about the side effects of the meds, they listen but can't see a physical change and usually can't help with the phycological for long, they end up avoiding the issues after a while because they don't know what to say.
Its good to talk to someone who can say "I get insomnia too and I never was anxious before but now Im anxious all the time and I take a sleeping pill every night!" You're not alone, and I've found this forum is a good in giving me hope and support.
With regards to my oncologist, I've always thought her job was just to get me through the treatment, jolly me along as she puts it! I think she listens to my complaints, she does acknowledge there are side effects then writes a script to fix the problem, and see you next time!
She doesn't sympathize, she doesn't go there, I go to a phycologist from the Cancer council for that! They were very helpful in getting my head sorted, they understand the journey of BC and side effects. 
I want to get to the finish, I want to know I've done everything I can to prevent this hideous disease coming back.
I remind myself of why Im doing this and keep going. 
I wish you all the best, it can be a long journey (hate that reference, none of us want to go on it) but hopefully we'll all get there and find some normality at the end.
Hope Ive helped you as you have me, all the best, congrats on 18 months!

@Temple your oncologist doesn’t believe in side effects?! 😳. That’s pretty ridiculous. I would change my oncologist 🤔

Hi Silvergirl
I remember my terror at having to take an AI and the list of side effects. I started off well but unfortunately 18 months in I am feeling the joint aches and hope this doesn’t get worse.
I am dealing with insomnia and hot flashes and hate the memory issues.
My oncologist doesn’t believe in side effects and flatly doesn’t want to know  I don’t discuss them. Or anything else. Has the personality of a pot plant though competent in oncology I guess.
I have read the side effects recede once you finish but I fully understand how you feel and the will to return to the life you had otherwise expected. I never expected to age prematurely and the change in me is significant. 

My oncologist stopped my hormone therapy at my yearly checkup in February this year. I had completed 7 years and 3 months on a combination of Tamoxifen and Letrozole. In answer to your question about how does it feel after stopping and do you feel better etc, in my case, the answer is yes.

The lack of estrogen was resulting in many soft tissue (tendon) injuries that just wouldn’t heal for me. I did wonder if it was just my age (I am 55 now) but it seems that as the time off the medication has gone on my body is repairing itself. Mentally I am happier and calmer. My pain is gone. Hope that helps to know that your body can function more normally again once the hormone therapy has done the important job of reducing the chance of recurrence. Take care and best wishes for your last few months of it. xxx

I'm coming up on 3 years and have had a helluva ride on Letrozole.  I've stuck with it because it is supposed to be the most effective for my bc.  My onc would let me take a break but he agrees that it can be harder to go back on.  It is getting a bit easier.  Exercise definitely helps but I know how hard it can be to A) fit it in, and B) to do it when you're in so much pain and you injure so easily.  Go to an exercise physiologist who specialises in cancer treatment to make sure you're doing the right things, the right way.  You can get a health care plan for it.  Even if you don't continue with them, you'll get the right steps to do elsewhere.  Try Encore through YWCA.  There may be other things local to you.

Definitely not old!!  Welcome to the forum @Silvergirl - well done on doing 4 years on Aromasin!   I am at 3 years now - Letrozole, then Exemestane and currently Arimidex (last 2.5 years.).  I was mid 60s when diagnosed & went from being a relatively fit, 'ok' sized lady - to now feeling like I am 80 & weighing an extra 10kg!  :(   My aches & pains 'come & go' ... I haven't had a break on Arimidex yet .... tho did on the other 2.   We live in hope that when we stop taking the tablets, that our bodies will return to some sort of normality ...... I hope so!

Take dare & all the best xx