Anyone stopped taking hormone blocker after breast cancer?

[TooManySideEffects]

I had breast cancer in 2021. After I finished radiotherapy I was started on Aromatase inhibitor (hormone blocker as my BC was hormone receptor positive)
I have tried 2 different ones but the side effects are becoming intolerable. I very quickly got joint pain and stiffness, feeling a lot older than my years. But kind of got used to it and just tried to do more exercise.
But now I'm finding I'm getting hot flushes again, my migraines which I had since my mid 20s (but which greatly reduced at menopause) have come back with a vengeance. My mood is lower despite things in my life being good. I feel pre-menstrual, how I was as a teenager.
My dexascan shows my bone density has decreased (despite doing weight bearing exercise) and a recent blood test shows my cholesterol is raised despite eating really healthily. Both of these are known side effects of the drug I'm on.

So, is it worth it? My bc was found on a routine mammogram, very early, small. Is it worth losing quality of life now and causing other health issues for the small benefit this drug may have.

I know I should discuss with the breast care nurses in the first instance but just wonder if anyone else has experienced similar and what you did.

Thank you

My mother had BC twice and was put on the hormone blockers after the second time. She took them for a while but the side effects became too much for her and she hasn't taken them since, says she never will. I don't blame her as she went through enough.

Might have gone without if I'd known that I have the hot flush gene and er there are the other negative side-effects. Vitamin D tablets made a HUGE (if slow) difference to joint stiffness. But it's hard to know when you're under menopause age - I'm on them for 10 years (2 more to go). Can't wait to go on hrt tbh

Aaah bless you I know how hard it is. They don’t tell you how shitty it will be!! I was diagnosed in 2016 my cancer was stage 2 strongly oestrogen positive. I did 5 years of Tamoxifen which threw me headfirst into menopause literally overnight (I was 46). The side effects were horrendous I thought I was going insane, nearly broke my marriage at one point. My bone density was also affected. After 5 years I was put on Anastrazole which I have now been on for two years or so, bone density has decreased again I’m on treatment for osteoporosis now. I’m also on vaginal oestrogen for vaginal atrophy.

My breast surgeon has finally said in 6 months I can come off it. There has been a fair amount of damage done to my body. But I’m still alive which I’m very grateful for.
Oh and the joint pain aaargh…. 🙁

Is it Letrazole? I had absolutely awful joint pains with it. I could barely walk and was taking painkillers almost every day just to get through the day.

I spoke to my oncologist and she prescribed Tamoxifen instead. Absolutely no side effects which is just as well as I'm on it for 10 years.

I was diagnosed with ER+ breast cancer last year, prescribed Tamoxifen for 10 yrs (I’m 33) I did 3 months of it and decided to come off. Had a conversation with my breast nurse and asked for my Predict score . Based on my low score of the tamoxifen benefit (was tiny like 0.2%), plus the horrendous side effects- I thought I’d risk it. I might re-consider after my next checkup , but I thought quality of life was better for me at present

I do wonder what benefit I have had from 7 years of hormone blocking therapy. My oncotype score was very low, so prognosis really good.
Lots of women come off it, the side effects are so hard. It really can affect your quality of life.

My mum took these for 7 years after her breast cancer before she said no more. Not easy. I guess you need to weigh up what's best for you.

I would discuss with oncologist and also look on Predict Breast and see what your scores is for benefits over 5, 10, 15 years - remember benefit is being alive so some women may be at stage 4 but not flag as an issue in that data that's why its better to look at the 10 year data over 5.

Also you can change what you are on - I am on Tamoxifen and its not great but doable. But mine is c 10% benefit. I have known people stop and it come back at stage 4 but hard to know whether than would have happened anyway. Oncologist is best bet.

Thank you all for your replies and insights and experiences. I know no one can really tell me what's best as no one has a crystal ball to see what the future holds.
Just if I hadn't had breast cancer and felt as I do now I'd be down to the GP asking for HRT. which is an absolute no-no of course.
Dh is so patient but honestly at times I'm so horrid and then emotional and then bedridden with migraines.
I think a phone call to the nurse is in order.

Oh and for the pp who was asking what I'm in - originally in Letrozole but changed to Exemestane which seemed better to start with but not now

I've just stopped taking Tamoxifen for the second time (18 months in to a ten year stretch). The first time was to check whether the joint pain and muscle spasms would stop - they did. I've since being trying liquid Tamoxifen but if anything it's worse so I've stopped again. Have an appointment with the breast care nurse in two weeks and she will refer me back to the oncologist to see what other options there are.

I realised the other week that my mum at 79 has better mobility than me at 51. And I'm struggling to do day to day stuff - have to keep asking my daughter to help me with things and she's only seven. It's utterly shit.

I’ve been on Letrozole for 18 months every day is a battle with the joint pain and muscle weakness.
I was pretty fit before I got BC I loved walking and gardening always on the go now I have to make myself go walking and it’s 20mins at best, I can’t stand for any length of time.
i aged 10years in in a few weeks I don’t know if it’s worth it.
I had a dexascan before I started taking letrozole and I have a zoldronic acid infusion twice a year and take calcium and Vit D.
How do you all get to speak to an oncologists or breast nurses I have no point of contact.
I had my surgery a week later my drain removed I’ve never seen or heard from the breast clinic since.
Finished chemo got a prescription for Letrozole in the post with a leaflet on side effects and told to start it 3 weeks after my last chemo that was it.

It may vary by hospital but at mine you have access to breast care nurses for 5 years at end of treatment though my treatment was surgery, surgery, chemo, radio, hormone therapy and don't know if it varies by treatment. You have to call them though, there's no regular check for me. I am seeing oncologist this week but that was as had stage 4 symptoms, scan was clear but there's a follow up so discussing hormone therapy there. GP is useless here. I would probably pay for private discussion if couldn't get hospital oncologist. Don't find Tamoxifen too bad, can swim several miles a week and normal activity levels, rarely ill. Not great for teeth or weight gain and bit of swelling but overall ok. Swimming helps my mental health. If it was almost no benefit I wouldn't bother but mine is a big benefit and have kids.

I had a lumpectomy and radiotherapy 6 years ago. I stopped taking Tamoxifen after a few months due to the side effects. I am now stage 4 (incurable) with a recurrence in my breast, and mets to my spine and lung.
I'm now on oral chemo and Letrozole for as long as they keep working. After that, who knows?

If I had to make the choice again, I would probably still do the same to be honest. I've had 6 years of completely normal health which was great and made a lot of memories. No-one knows if it would have come back anyway - I know several who were on/are on Tamoxifen and still have had recurrence so it's just a lottery really.

@Englishrosegarden I am so sorry to hear your BC has come back and that your prognosis is not good. I too am grappling with whether to stop taking Tamoxifen and have better quality of life. It's helpful to hear you wouldn't choose differently despite how things have turned out. Wishing you the best of luck x

With Tamoxifen I had far more side effects with one brand than another, in theory shouldn't happen but did though maybe as first brand was first one and just after chemo and radio.

Aches and pains are minimal and I find Wellwoman 50 vitamin once a week or so eliminates them. I take more if not going. I do swimming for exercise which is easy on joints. I had similar on a 6 week break from Tamoxifen so don't think it's that for me. Sleep is bad but anti histamine helps.

Sitting here after 8 weeks on tamoxifen in a lot of joint pain and worsening night sweats wondering if it's worth it for a 1-2% predict score!

I did do radiotherapy last week though. So it could be my body protesting. Or periods returning after an 80 day break.

Exercise had been managing joints well; I suppose radiotherapy may have skewed things.

Op I do know some women who struggle with what you're on are offered tamoxifen instead. Exercise is supposed to be very important too as reducing reoccurrences so it could be seen as important to be on something that allows you to do so.

The "Moving through cancer" book is really useful, as is 'get your oomph back.'

I've just stopped Tamoxifen, with agreement from my oncologist, because it's given me drug induced fatty liver disease, I'm starting on three monthly injections in a month's time, as an alternative. Some of the tamoxifen symptoms had started to improve so I feel like I'm just getting off one rollercoaster into another.

I've sent you a pm.

I tried letrozole for a year then switched to anastrazole and for another year. The side effects from both were unbearable. I I stopped taking anastrazole about 3 months ago and I'm slowly starting to feel better.
I've tried ringing my breast cancer nurse 6 times to discuss it with her but she's never bothered to ring me back so I just stopped taking them