I’m aware there have been previous discussions related to hormone therapy and it’s risks/benefits. I wanted to invite others to share their experiences.
I’m feeling pretty let down at the minute. Quick background, dx 2020 at 32, IDC grade 3, triple positive, no node involvement.
Had surgery rads, herceptin, some chemo and now a few years into letrazole. Since diagnosis I’ve also been diagnosed with a brca mutation so have had a double mastectomy and oophorectomy.
I’ve really struggled with menopause symptoms and a lot of issues with letrazole but persisted. Had a DEXA recently which has shown I have osteoporosis. I’ve been on the waiting list for menopause clinic and rheumatology for over six months. I’ve been discharged from oncology and I’m just out here pissing in the wind.
I’m 35 now and panicking! These meds are literally making me crumble and no one gives a hoot. I’m weighing up my options and seriously considering stopping letrazole.
Hi I was 54 when diagnosed with stage 2 IDC bilateral, yes one tumour in each breast, HER2+ ER+, just finished my year of Herceptin and have been on Letrozole since January.
I wrote this and will be updating as and when things happen.
There are other comments on Letrozole if you use the search at the top of the page.
Hi @pips88 I can’t offer an opinion on stopping Letrozole, not that it would be proper to do so anyway, because I am up the other end of the spectrum age-wise and Grade-wise to you. Just wanted to say, if your DX was in 2020 surely you’re still able to contact the BC nurse assigned to you? I was told when I was discharged back to the GP that I was still ‘under’ oncology for five years following DX, as they organise the annual mammograms, and that included the nurse. I did actually contact the nurse a few months ago as I hadn’t got the appointment for the checkup and it was obvious I am still able to do that. Could you call the nurse and tell them that you are considering giving up the AI and I bet you’d get a call with the oncologist toot sweet. It must be very hard to be so young and have gone through so much, you really should be able to talk this through with the experts - get them to try and persuade you why you shouldn’t give it up, that way you’d have the information to make a considered choice.
I’m also on the other end of the age spectrum but I was on Letrozole for 3 months and I got to the point that if that was what my life was going to be like for the next 10 years I’d rather not be here as the side effects were so bad. I had therapy at Maggie’s with a little improvement in my mood.
My oncologist told me to stop the Letrozole immediately. Within days I began to feel better and after a week felt alive again. It took 3 weeks for a change to Anastrozole to be approved and I’ve been on it for 10 days with manageable side effects. I hope it continues.
I also did a workshop on the physical effects of the menopause and a 2 session one on the emotional effects. Both with Maggie’s. Lots of advice and strategies to cope and to understand the physical and emotional effects of the menopause and things to ask the GP for to help with symptoms.
Therapy was so much more effective once I stopped taking the Letrozole as I was able to think straight. I have my 13th and final session next week and I am in a much better place. Although I have some way to go I feel that life is worth living.
Please don’t stop the Letrozole without looking for an alternative as a change and support for your menopause symptoms might make a lot of difference. I was discharged from oncology back to the breast clinic where I am now able to contact my breast care nurse again.
I was invited to take part in some research (The Sweet Research Study) into the effects of hormone therapy and if access to an app, advice and support could help. Unfortunately I am in the control group with no support, just questionnaires to complete but hopefully there will be more support in the future.
I hope that things improve for you soon. Sending a virtual hug your way. x
Thanks for your reply Tigress.
Yes, your right I should contact my outreach team.
Definitely feel like I need a pep talk or something lol.
How have you managed on letrazole? X
Thanks for your reply. That kind of support sounds amazing!
Unfortunately, I’m in a really rural area and there isn’t access to places like Maggie’s. I’m frustrated that I’m still on the waiting list for support and feel like there’s no where to go!
I’m glad you were able to access Maggie’s and I hope their programs help! X
There are post - menopausal women who are on Tamoxifen . I have seen posts on here from them and there’s also one at my local support group - she has a strong family history of osteoporosis and didn’t want to take an AI . Her Oncologist said Tamoxifen would not work as well but still thought it was worth prescribing it. I think from a clinical perspective it isn’t as effective after the menopause as AI but if you do as @Tigress suggested and contact your BCN service hopefully someone should explain it in more depth to you and work out whether there are any options and what they are .
Also maybe your BCN might just be able to expedite your referrals and see if there’s anything you could have to help your bones . Xx
So annoying how much conflicting information we get . I wish I’d never come off it now being diagnosed with osteoporosis. But we just do what we can at the time don’t we.
I will give them a call tomorrow xx
Might be worth revisiting that one with an oncologist as I was told I could take it after a full hysterectomy including ovary removal - I’m a lot older than you though and my situation was rather complicated ! I think they prefer Letrozole as it’s slightly more effective after menopause surgical or otherwise .
Hi @pips88 well, I’ve been taking it for almost two years with a couple of gaps for a few weeks at a time. I haven’t had the joint or muscle pain that plagues lots of women nor have I had menopausal type hot flushes etc etc but I didn’t get those during the normal menopause (just a near homicidal maniacal wish to obliterate everyone and everything for around three years - but no hot flushes!). What I do get is an impact on my cognitive state, with fatigue and brain fog which I could do without however and my cholesterol is rising but I was er+ 8/8 and am only on the 5 year AET program so am trying to trudge towards October 2027. Both my NPI and Predict scores were exceptionally good so on bad days I debate with myself about giving it up but I really don’t have the arguments that you have with regard to side effects so swallow the pill.
I know you’re really fed up and have every right to feel like that but you’ve come so far to let the system beat you now. Phone the nurse tomorrow, be honest about how you’re feeling and say you’re open to considering a change to another AI or even Tamoxifen if appropriate but continuing with Letrozole will be difficult. Then come back to this thread and tell us how you got on!
Hi Pips88
So sorry to hear all you have gone and going through, which most on this site can fully understand, I’ve not had the same as you regarding Letrozole but had issues with first Tamoxifen then been on Anastrezole which is quite similar to your Letrozole as I understand it, I’ve had terrific pains in all my bones and joints and asked for Dexa scan as nobody had offered, found to have a bad deteriorating
Of my bones,such a concern you cure one thing and get another, but not sure what we can do as we also don’t want cancer
But think it’s worth putting these concerns on the site so all can share there own thoughts Best wishes to you xx
I was given the tablets but had a issue with jaw pain and my dentist recommended in stop taking it. I talked to oncology and my GP about it and they didn’t want to prescribe anything until I had my dexa scan etc…so over a year later I’m still waiting for the referral to discuss it with rheumatology.
So sorry you are having similar issues! It’s really tricky isn’t it.
I’m worried what my future will look like with such significant bone deterioration and it’s all a mess.
The tablets are absorbed differently than the infusions. A lot of people get those and the vast majority have no issue. I wonder why they just didn’t do that with you? It also lowers your rate recurrence percentages which is always a nice thing.
