Tamoxifen. Is anyone else struggling?

[MarmosetsInSpace]

Yes, I get it. Tamoxifen is great at preventing the breast cancer from coming back, and I'm grateful for that so I take it every single morning. But does anyone else really struggle with this drug? Ever since I started it, I've felt knackered. I can't fully regain my fitness. My brain is shot to pieces. Perimenopause is part of the picture too, but bloody hell I hate Tamoxifen. I'm in danger of getting booted out of work because I'm just not very good at functioning right now. Anyone?

I've been on it for nine years - last dose will be next July. I have had symptoms that mimic the menopause but have persevered.

How old were you when you had BC @Iloveeverycat ?

45

I took it for 3 months and it made me feel weak, nauseous and utterly miserable. I looked on the predict tool and saw it increased my survival chances by 1-3% so I decided not to continue with it

This is depressing reading. I've been on Letrozole and Zoladex for two years (diagnosed at 50), tried acupuncture for the joint pain which helped but the hot flushes persist. At my last oncologist appointment I brought it up and he said he'd review in February when I go back.

He did say I must exercise regularly which made me laugh - I run 6km every morning and do weight training 3-4 times a week. I restarted pilates classes a month ago and I have to say it's made a big difference with my creaky joints.

I used the new Predict tool and apparently Tamoxifen would have given me a 0.4% increase in protection over a 20 year period. So, basically the benefit to me is statistically irrelevant. And yet my risk of uterine cancer, heart disease, osteoporosis, strokes and pulmonary embolism are significantly increased.

My MIL actually took Tamoxifen for 14 years (should only have been 5) due to a GP oversight. Okay, in 24 years her BC didn't return but she died of a massive PE when she was only 76.

This is what’s upsetting me, my body has been damaged by a drug that will have given me very little (if any) benefit. It’s unacceptable!

It is very concerning. I also forgot to mention that Tamoxifen can cause serious vaginal atrophy and constant UTIs (often leading to bladder issues/incontinence etc).

The easy, obvious solution is to use localised estrogen cream which has now been proven to be perfectly safe for BC survivors. And yet my oncologist insists I can't have it (I ignored him and just bought it online).

Recently though I decided to tackle my GP and get it on repeat prescription. She saw from my notes that my oncologist had said no so told me she couldn't help. I then treated her to a 10 minute diatribe on the benefits of estrogen cream, the importance of quality of life, the prehistoric beliefs of my oncologist, the strong link between regular UTIs and dementia in elderly women, the over use of antibiotics to treat the symptoms of UTI and not the actual cause and the consequent antibiotic resistance.

Needless to say, she relented. I think she would have happily given me a repeat script for recreational morphine just to shut me up and get me out of the surgery.

Coming back to add - when I was diagnosed with the clot on my brain (that I am very lucky I didn’t die from) I told every medical professional I saw that I blame tamoxifen. I have no other risk factors whatsoever, never smoked, exercise regularly, not obese, never been on the pill etc. My usual oncologist point blank refuses to acknowledge this and maintains “it’s just one of those things” even though it is well known that Tamoxifen can cause clots (and said I couldn’t take it anymore because of the clot - not that I needed telling to stop)

I did see a different oncologist once by chance and he did actually admit the CVST “very well could have been caused by tamoxifen but we’ll never know for sure”. Well I know it was. I was in hospital for two weeks, narrowly avoided a stroke and am lucky my GP was on it enough to call and arrange a scan at A&E when I showed up with a banging headache. Why are so many doctors so hellbent on defending this drug?

Bloody hell @TinyHousemouse that’s scary.

Given that I was told to stop Microgynon because my DGM had strokes and I get migraines, I’m definitely going to ask my GP to contact the hospital about my coming off it.

I had vaginal astrophy at about 6 years in. The Dr suggested it and said I was alowed to take estradiol tabs as it was local only and I didn't have to see an oncologist to take it. They just gave me a prescription. I only had to stop once I had stopped tamoxifen.

I just wanted to post as maybe assurance, that the predict tool only looks at death not recurrence. Most people who have secondary breast cancer live at least 5 years. So even if the % benefit seems small it’s probably larger than the model implies because it’s not factoring in that some people are alive but have cancer again.

Happy news! I got a letter from the hospital today in reply to my question via the GP saying that the potential risks outweigh the potential benefits, so after 7 years I can stop taking Tamoxifen. It’s such a relief.

I'm resurrecting this thread because I'm giving tamoxifen until the end of January, then I'm speaking to my oncologist. I've managed to get a brand other than Tillomed, which doesn't agree with me, and I've started taking tart cherry. If that doesn't help, I'd like to halve the dose initially, but if that doesn't ease the chronic joint pain and low mood, then I'm coming off it.

I'm 62 this year, and I want to feel well for how ever long I've got left. And as a PP said, the percentage benefits are only about survival, not recurrence, and tamoxifen brings a whole host of serious crap with it, which could kill you, anyway.

Edited to add: I think new studies are saying 10 years is 'better' than 5 years. My oncologist told me 5 years initially, then last time I saw him said he'd like me to take it for longer.