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Hormone meds frustration!

12 REPLIES 12
Member

Re: Hi ORe: Hormone meds frustration!

Hi Leonie, thanks for your good advice on this. I chased it up with the BCN and oncologist who agreed that with my circumstances and favourable outcome I can come off Tamoxifen end of this month and do not have to go on any other endocrine treatment 😃 I am so pleased about this. Sending hugs to you and everyone else who replied to my post xxxxx🤗🤗🤗

Member

Hi ORe: Hormone meds frustration!

Hi Old spice,

 

You need to speak to your oncologist about this. They can do predict tool with you and best advise you. Like any meds letrozole will affect people differently, maybe it will be better for you than Tamoxifen. Another lady I know is fine on Tamoxifen so is staying on that despite being post menopausal now. It's not one size fits all and may take a bit of trial and error, hence the suggestion of coming off for a month.

Despite risk of breast cancer many women cannot cope with side effects of normal menopause so take hrt. Most will be fine but statistically c.2 in every 100 will get breast cancer because of it..the other 98 won't.

Likewise tamoxifen and letrozole do save lives......but not all, some will still have a recurrence whilst on it, some who come off it won't and vice versa. But no one can tell you which one you will be.

Let's face it it's a lottery who gets a recurrence same as who gets it in the first place and we do what feels best for us to cope with that in our own way. 

Good luck with whatever way you choose x

Member

Re: Hormone meds frustration!

Hi Leonie, sadly I did not take out critical illness cover when I opened my life insurance policy in 2012 as it was too expensive at the time ☹️ I got diagnosed with BC in 2014 and after treatment had no choice but to go back to work full time to cover my mortgage etc.  No insurance company will go near me now and I cannot retire until I am 67 so I am stuck in a catch 22. The hormone treatment causes crippling side effects for me so I was hoping I could stop after 5 years just to feel normal again. However even though it is an informed choice for the individual there are those who scaremonger and make me feel guilty as if I am throwing my life away. So much pressure to comply and stay on it for the duration.

Member

Re: Hormone meds frustration!

Hi Oldspice,

 

Just read a thread on here where someone's life insurance policy taken out alongside mortgage paid out on stage 2 cancer as a critical illness so got her mortgage paid off.

 

Just in case it applied to your circumstances and could help.

Member

Re: Hormone meds frustration!

Actually I should have re-phrased that as: I have too many other things to worry about at the moment especially how a no deal Brexit could impact on myself and others I know thanks to the privileged buffoon who is steering the UK into this train wreck but this is not the place for political debates 😶

Member

Re: Hormone meds frustration!

I used the Predict tool which actually showed that there is no long term advantage in taking hormones with my type of BC. Besides which if we have a no deal Brexit which now looks very likely there may even be a shortage of these tablets as there is currently with HRT. I don't have the time to worry about it really..... 

Member

Re: Hormone meds frustration!

Absolutely it is  a personal decision and we are all different .However  I read somewhere recently that a substantial number of women do not take the tablets long-term  . It is of course their life but it does mean the statistics we have probably underestimate how effective hormone therapy is ...and I do count my blessings every day that my cancer was caught early .

 have a good weekend all 

Member

Re: Hormone meds frustration!

Hi Susan Manchester,

 

I have just started on letrozole  age 51 and already going through menopause so just increase in symptons. I wondered why not Tamoxifen first but have to trust the onco knows best. Also told ten years norm now so they obviously feel it works but about 3% advantage in predict tool so up to individual and side effects differ from person to person I imagine.

 

Don't suppose we can appreciate 5 years of symptoms when we have only just started but women do sometimes stop because side effects not worth benefit. It's their body and their decision, onco recommends but cannot make you take meds. So long as it's an informed decision.

Member

Re: Hormone meds frustration!

Thanks Ann! It is good to hear the voice of reason 🙂 There is so much conflicting advice it is sometimes hard to know what to do for the best. Despite it being 5 years since my diagnosis I have never really settled with the idea of a new normal, I tend to go against the grain and try to live the life I had before. Mainly this is out of necessity as I have to work and do everything else a busy housewife is expected, my husband does help but I have no one else to rely on. I cannot afford to drop my hours or retire (my mortgage will not be paid until I am 67 and my husband lost his work pension when his firm went bust in 2002) So I assume a 'can do' mindset to make being in a catch 22 a little more bearable. Sending hugs Michele x

Community Champion

Re: Hormone meds frustration!

Hi Oldspice,

Sometimes it's the luck of the draw who you speak to! Health professionals are not necessarily consistent in approach.

I would have thought that if you've done 5 years & you're ok with any risk, then it's up to you what you do.

I'm the same age as you & also had an early diagnosis. I did have the option of going onto anastrazole, but decided to stay with tamox as I'm ok on it & for me clinically, it didn't make much difference. Both the onc & surgeon were happy with this. 

Obviously, you will make the decision that's right for you & you don't have to do anything you don't want to.

ann x

 

Member

Re: Hormone meds frustration!

I had a very low grade BC so thought 15 rounds of radiotherapy and 5 years of Tamoxifen was quite enough. Due to financial reasons I have to work full time for another 8 years and I struggle now with juggling a long daily commute an 8 hour working day alongside the side effects of Tamoxifen which are quite severe for me. Letrozole could make things even worse and mean I might have to give up work entirely - then the resulting poverty and debt IS an awful place to be. I know as I was almost destitute after my first husband left so please don't tell me to count my blessings.....

Member

Re: Hormone meds frustration!

I thought Letrozole was standard treatment for post menopausal women these days ? I started last Friday and have been told 10 years is now pretty standard . I think most of us would trade side effects for death ? 

Member

Hormone meds frustration!

Hi, I just had an extremely frustrating phone conversation with a BCN at my local hospital and felt the need to unburden! Basically to cut a long story short in June I spoke to (a different) BCN about coming off Tamoxifen in September as it will be 5 years since my treatment ended and I had such a small low grade BC that I felt the side effects outweigh the benefits of brazening it out for another 5 years or even worse going onto Letrizole. In June the BCN was very optimistic about this however the one I just spoke to is more sceptical and said she would have to run it past the oncologist and get back to me but said it is likely that they will say I can come off for one month to see if it is the meds or the actual menopause causing my side effects and I might then have to continue or go on Letrozole. This is a fate worse than death for me as the side effects are even worse on that and I struggle as it is 😟 What is most annoying is that I was Ms Average and went through the menopause at 51.I am now 59!  Just wanted to know anyone else has been in this zone and if so was there a satisfactory ending?!