Hormone inhibitors

My Breast care nurse gave me this booklet when I was in hospital to have my mastectomy as my breast cancer is hormone receptor positive.  Hopefully having a read will give you a better understanding.  Some of us sail through with minimal side effects and others not so lucky!

https://www.bcna.org.au/media/2613/bcna-hormone-booklet.pdf

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

Take care

Hi @55Jlz. Has your doctor told you which hormone inhibitor they want you to take? Broadly speaking if you are pre-menopausal it's usually Tamoxifen and if you are post-menopausal it's an AI (aromatase inhibitor). There are three, Anastrozole, Letrozole and Exemestane.

There is lots of info here on each of those. The best way to find it is to use the search bar with the name of your drug.

It's important to remember that we all react differently to the medications. Some people breeze through with little or few side effects. Cross your fingers and hope you fall into that group! No one gets all the side effects, some of which are incredibly rare, so try not to get frightened by the long list.

Here's the BCNA page on hormone therapy:

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

Let us know how you get on. I'm five days into taking Letrozole myself and have aching ankles and knees. Not sure yet whether it's the medication or something else! K xox

I’ve just started taking Tamoxifen and I’ve had no side effects at all two weeks in. So far it looks like I’m one of the lucky ones. I hope it goes well for you.

I think the starting point might be how much additional reduction of bc recurrence will it give you.Then if worthwhile which hormone therapy is appropriate for you .

I toowas worried about Hormone Therapy .I am Er+ and it provided a significant reduction in risk.As I am post menopausal I was prescribed an Aromatase Inhibitor - Letrozole/ Femara which I have been on since 1/8/17.

Yes there have been side effects - joint stiffness , a few hot flushes .Joint pain has been helped by a daily one hour walk - I learnt I could walk thrust after 10-15 minutes.Also I do a gentle stretch/balance class twice weekly which involves light weights. I was also told by my oncologist to take Krill Oil tablets for joint pain which I do .Basically these side effects  have now settled and my body adapted. The more worrying side effects are less obvious - cholesterol spiking and bone thinning.

Cholesterol can be managed with statin tablets but I found after a few months they made me think Ihad dementia.I stopped statins and take low dose aspirin and Krill Oil tablets which are both blood thinners.Diet modification can help a lot - rolled oats eg Michael Mosley has explored this area and there is a lot of diet guidance online.It is wise to have a baseline measurement before starting hormone therapy so it can be monitored.

Bone thinning is the big problem of Aromatase Inhibitors and a baseline measurement at the outset is wise.I started with osteoporosis at the outset and an osteoporotic fracture so I also have 6 monthly Prolia injections which are very effective at building bones BUT when you stop bone loss is rapid.I would recommend caution before taking bisphoshonate tablets for bone loss because of risk with dental procedures which may make it difficult to get dental work done.

I cannot comment on the alternative hormone therapy given to premenopausal women Tamoxifen but it too has its side effects.

I too am on femara as post meno and have hot flushes and joint pain mostly in legs fingers and feet, been on it for 3 months and hoping things will settle as 5 yrs seeming a tough gig. I obviously want to give myself best possible chance of no recurrence so want to stick with it. Any tips on ways to cope other than pain relief would be appreciated.

I am post menopausal, and like you, @55Jlz I  finished my radiation therapy without too many problems.  Now on Letrozole (4 weeks in) and am feeling a bit achey ... but I am already arthritic, so no surprise there.

I reckon you'll just have to 'give it a go', see what the side effects are, see if they can be minimised ..... and get on with it, as it is to our advantage to complete the 'course'!   ;)  

I've been taking Arimidex for 3 weeks now and haven't noticed anything different. All my joints still ache, I spend more than 12 hours in bed each day due to fatigue - so I'm wondering how I'll recognize the symptoms of the hormone inhibitor. I reckon things can't get much worse so I'm not too concerned about taking it...
I've met people who have no side effects from hormone therapy and others who'd rather have a recurrence than continue.
And everything in between. I was Stage IIIC so have no choice really.

Hi  @55Jlz,

I pondered whether or not to answer your post as I have had a really bad run on Tamoxifen and I don't want to put you off if this is what is recommended.  Your oncologist will be able to give you the percentage of increased protection by taking these drugs versus not taking them.

 I feel there are a lot more questions to be asked and answered about these drugs.  The possible side effects and how to handle them are skimmed over in the information booklets as a bit of a formality.   It's the last thing on the treatments list,  so it's like here take these pills and thanks for coming.

Doctors seem to shrug off side-effects of hormone therapy as if they are only minor inconveniences.  You get told about hot flushes, possible loss of libido and some aches and pains.  

No body tells you that the hot flushes can be that bad they make you dizzy and nauseous or that the aches and pains can be that bad that when you lie still for too long you can't move.  (Makes jumping out of bed for a loo run rather interesting when your hips wont' move) Between that and the flushes I am lucky to get 5 hours sleep a night. 

They don't mention the the brain fog, decreased cognitive function, verbal memory issues and speech fluency, the inability sometimes to multi task  (executive brain functioning) disorientation, insomnia, anxiety and depression.  

It gets worse the longer I am on it, not better, like I was told.  I can handle about 3 months and that's it.  Do some research (I am sure you already have)  and ask in depth about those "rare" side effects which sometimes are not as rare as they make out.

All the best.

XOXOXO

@55Jlz
Not everyone has the extreme side effects and most sail through.  It all depends on where you are at in life, menopausal, peri or perhaps post!  Be guided by what your specialists have to say and the written research that is here on the BCNA website.  
@kezmusc my heart goes out to you as you are at the extreme edge of side effects!  Take care

@kezmusc how much longer do u have to be on it??