Hormone blocking therapy

Hi there @Pommy...I've been on letrozole since mid 2017, so just over five years now. I have pre existing joint, tendon, muscle and skin issues due to scleroderma. My symptoms are no worse than either I, or my rheumatologist would have expected with the natural deterioration of this lifelong autoimmune condition. I also had osteoporosis before starting letrozole, due to a very early menopause (before age 38) and having been on prednisolone for over ten years.I have had two different ribs break on two different occasions, without fall or injury and for this I have a six monthly Prolia injection to help my bones, and my numbers have actually improved a tad. I'm of the opinion that had I not already had these other issues, my experience with letrozole would have been quite manageable. It still is manageable and I'll continue with them for at least another five years. Good luck with your ongoing treatment.

Hi @Pommy8, I just started on Letrozole after having bad side effects on tamoxifen. I was ok on tamoxifen for just over a year when really terrible side effects saw me back at tge oncologist and ultimately stopping them for 6 wks.

It's now my 4 week on Letrozole. I notice a couple things after 4 days but so far I am ok. I am a little stiff in the morning but a couple of stretches and my morning walk seems to set up my day well.

Don't be frightened. Give it a go and just monitor yourself. If things do get hard for you talk to your oncologist and they can change things. But remember that it really only affects about a 1/3 of those that take it so fingers crossed that won't be you.

@Pommy8

Not everyone has bad side effects and hopefully that's you

@Afraser is one, hardly any side effects and lucky her, nearing the end of the AI

Here's a resource if you haven't seen it already 

https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-blocking-therapy/

I've not started my treatment yet but will be going on Letazole I'm terrified going to turn me into an old person before I'm ready not functional like I am now and not been me as can make you moody and I'm not that person.

Thanks for sharing your experience. It has been difficult deciphering all the info especially when considering my job and what it could mean.
 However good feedback re trial it first to see how it goes, May have minimal side effects…

Hi @Julie-D60
i have been on hormone blockers for 18 months and worked myself into a frenzy about potential side effects before I started on them.
My oncologist told me to not get ahead of myself and that many patients have no side effects or only mild side effects.
I started on Letrazole and all was good for about 12 months and then I got carpel tunnel and trigger finger - I changed to anastrazole to no effect.
I recently saw a hand surgeon who said he could operate and it’s not major surgery but  I opted  for a cortisone injection which seems to have done the job for now.
I am 63.
One of the best posts I saw on here was that the most important side effect from her hormone blockers was she was still alive.
So in summary , don’t worry ahead of time  , you may have no side effects or only mild side effects and if you do develop side effects you feel are intolerable discuss with your oncologist and even seek a second opinion if you feel warranted.
Take care🌺

Hi @Julie_D60, so glad to see you reaching out to wonderful members of the Online Network. I thought it was worth mentioning that we will be hosting our next Ask the Expert Digital Event on Managing side effects of hormone blocking treatment with Dr Michelle White on 29th June 2022 Click here to register for the event.

whilst I’m having some side effects , I’m also aware that the hormone blockers now are helping to prolong my life as I’m stage 4 , so I’m trying to fine tune my responses to the situation . Suspect a lot of people survive hormone blockers and we don’t hear about it as much as the negatives because they’re not posting on the forum 
don’t assume you will suffer all,the side effects OR be totally wiped out by them as we all appear to react differently to different ones , just to make it difficult 

Thank you for replies, will read the resources provided.  Has been a mine field suddenly dealing with diagnosis, surgery and then understanding the illness and various treatments.  Still coming to terms with it all, coming out of shock; information often gives me comfort x

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

https://www.bcna.org.au/resource/fact-sheet-breast-cancer-pathology/

https://www.bcna.org.au/media/5850/hormone-therapy-and-breast-cancer-booklet-112017.pdf

Hopefully these links will help you understand where you are at!

As others above have already said they are quick to tell you the bad side of things however, we are all different and our bodies all react differently to what treatment is given.  As you look through the first link, understanding breast cancer, you will see there's quite a few different types and not all require Aromatose Inhibitors!

Best wishes and take care and ask away as we are all here to help when we can