Scared about hormone blocking treatment

TamiOc

Hi everyone,

I am 40 years old and have 7 year old twins. I have just been diagnosed and positive for both oestrogen (80%) and progesterone (40%). I have been told I will have to take hormone blocking medication for at least 5 years and I may go into early menopause. 

I started researching and the list of potential side effects was just the straw that broke the camels back I think. The thought of it being such a long process and potentially never getting back to 'normal' really hit me.

I am just wondering if anyone who has had to take these drugs might be willing to share their experience with me? 

Cath62

Hi @TamiOc , the thing with hormone blockers is you really need them to help stop the cancer returning. We are all different and we all react differently but I would be guided by your oncologist.

The list of side effects is always long but it doesn't mean you will get them all. And if one hormone blockers causes too many issues talk to the oncologist as they may be able to try aanother. If we look at any drug, even antibiotics the list of side effects goes for pages and pages but most people don't get any. Try not to read all that when you have not even started them yet.


They probably will put you on tamoxifen given your age. It is usually given to pre menopause women. I was on it for 18 months and then changed to another one. I am post menopause. However tamoxifen is widely used for pre menopause women and largely most women don't have major side effects so hopefully you are one of those people. 

Best wishes 

TamiOc

Thank you so much, you make some great points and I am so glad to hear that not everyone experiences all of the side effects and that there are options to change potentially if needed

arpie

So sorry to see you joining our exclusive little club @TamiOc ....  it will still be a bit of a shock for you and your family just now ....  ask away any questions that you have - as there are no silly questions xx

If you continue your 'treatment story' in this thread, it will become a bit like a 'diary' that will make interesting reading to you, in future years.  

Your medical team will be putting the best plan forward, for the best results for you, too xx   And as @Cath62 says - not everyone gets all the side effects - and some even get NONE!  So don't get 'ahead of yourself' .... just give it a good honest 'go' - and if the first one doesn't 'suit you' you can change to another one.  (I'm on my 3rd one & it is the best for me!)

In between now & your surgery - consider cooking some meals & freezing them, so you don't have to 
worry about cooking when you get home .... and DEFINITELY no work around the house! 

You could also join the Young Women's group too - and read up on how others with young children coped with their treatment with kids ....  just click on this link & hit 'join' ...
https://onlinenetwork.bcna.org.au/group/10-young-women

Also jump onto this link & read up on other areas in the forum that may interest you .... you can show off your pets, art & craft, gardens & even have a laugh on a couple of funny threads too!  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care & all the best for your surgery next week xx

Afraser

Hi @TamiOc

I finished 10 years of Letrozole early this year. I am happy to be through it, happier to
be 11 years post diagnosis and NED (no evidence of disease). I too was post menopausal so I can’t help you with early menopause (other than I had practically no menopausal symptoms, one heavy bleed, that was it!). My point is that cancers are different, reactions to treatment are different and you simply don’t know from the experiences of others how it will go for you. Letrozole is often associated with joint pain, achy bones, hot flushes. I had none of those. I did have some side effects but as I am much older than you, natural ageing may have played a part. None involved pain, none stopped me working or travelling! Remember you can always stop. These drugs work, I continued Letrozole for ten years because, in my particular case, research showed ten years to be more effective than five. But nothing is guaranteed! We all want to do whatever we can to never go through it all again, but if the side effects are messing with your life, you do as much as you can and then stop and/or consider alternatives. Best wishes. 

Aska

I am currently on Tamoxifen as I was pre menopause. Have been on it since end of July. The biggest side effect for me has been the hot flushes  waking me so often during the night. But I've been having acupuncture which has significantly improved this. This was recommended by my oncologist.  I highly recommend starting acupuncture asap. You can access 5 Medicare funded treatments through the chronic disease management plan which you get through your GP.
Happy to help if you have more questions. 
Xx

TamiOc

Thank you, it so useful to hear everyone’s story and even just hearing from women who have been in the same situation is so comforting 

Pommy8

I'm currently on Letrazole been taking 18 months age 59 and been fine even though scared to death before I started reading all side effects,
Good luck x