Tamoxifen - apprehensive about starting

Oh dear. Not quite but I remember the flippancy of the BCN when I was diagnosed saying “you’re lucky you’ll just need to take a pill after your surgery and it will be ok”.  Now I’ve had a mastectomy, full axillary clearance, diagnosed as Stage 3 and finished four months of accelerated chemo if I wonder what that nurse was thinking.  Radio to go and then Letrozole for 10 years and abemaciclib for two…. I finished chemo yesterday and feel quite empty - you are not alone in fearing entering a new wood and all the uncertainties - or feeling miffed when those who can take HRT extol it’s virtues or suggest “alternative” therapies not realising many if not most are dangerous for us.  There is a lot online about side effects of these drugs but those I’ve met face to face have said they aren’t as bad as they expected and many are back at work/running/doing stuff - I think support communities maybe hear more from those for whom things are a struggle so try not to assume the worst.  I’m terrified sometimes but then I remember I’ve overcome plantar fasciitis and done couch to 10k, I’ve ripped a rotator cuff and had surgery on that and I have a plate in my foot. I know it’s longer term but I have overcome before and I’m still that person who will push through that pain barrier to stay active - and I bet if you think back you’ve got victories in the past you can draw on for strength now.  Yes we will have some side effects, but no one gets all of them - be gentle with yourself and if you can do a staggered return to work or delay it a while try to do that.  Let us know how it goes - but enjoy that holiday!!

Thank you. Blimey you’ve had a significant amount on your plate. What a journey. You’ve finished chemo which must be a strange feeling. Def not feeling lucky. 

You’re right, I will push through and keep active and try to hang onto any semblance of my self. Well done on your running and recovering from surgeries. Inspirational!  

My gut feeling is it’s a dark grim prospect - I don’t think the forthcoming winter helps. I did enjoy my sunshine holiday last week - a long time waiting. 

I have a a sick note til The end of nov. I don’t want to take advantage of work but I could do with a few more weeks to let the meds kick in and finish my physio. How are you after your mastectomy?  I find it hard to be positive. 

I had my mastectomy first and felt I was recovering really well but then the chemo seemed to take over and slow everything down.  You are right about the time of year and the dark - just realised thst even though radio shouldn’t take long by the time I’ve got to the hospital and back that’s most of the daylight hours wasted ….. need to be outside for my sanity.  Maybe you could get signed off for another month and get some things in place to make going back easier (meals in freezer, sort your work wear - I look around and realise I’ve let everything get in a mess and having to wear anything but yoga pants and a hoodie is a major challenge…)

Hi Ladybug

I'm 51 and had six rounds of chemo, a lumpectomy, radiotherapy and 12 rounds of Kadcyla.

I started my Tamoxifen after radiotherapy and while I was on Kadcyla.  I now just take Tamoxifen.  I was quite worried when I read about some of the side effects but I know everyone is different. Apart from some broken sleep and feeling a little warmer not hot flushes I don't notice any effects. 

I take my tablet in the morning because I'm more likely to remember it.

The only thing I would say I have had a couple of different brands of Tamoxifen and find I get on better with one certain brand which the chemist try to provide me with.

1. Hope this helps and any other questions please ask.I will help if I can.

Carolyn x

I hope your radiotherapy goes as it should with no hiccups and your AI journey isn’t too pants. 

thanks for your response - luckily I wear a uniform for work so I don’t have think too much about how I look. I actually somehow have 6 different prosthetics to choose from. Fun. When I do return to work it will be a very slow phased return . 

There’s nothing wrong with yoga pants and hoodies! feeling warm and comfy is the main thing. I just wish it was the Spring! 

Thanks Carolyn

My chemist gave my Mylan and my lovely physio suggested I keep a diary of side effects and brands. I’ve read a few posts about brand differences. 

it sounds like you have any side effects under control. My consultant told me to keep an eye out for any ‘weirdly’ bleeding. Basically any bleeding in the next 3 months is ok, but after that then I should be seeing my GP. This has also stressed me a little. 

I work shifts - I guess when I’m back to normal work days I’ll have to be vigilant about timing my tablets.

I hope I have similar side effects to you ! Thanks again x

I was apprehensive about taking hormone therapy, though never considered not taking it. There are lots of different things to try if Tamoxifen doesn't agree with you, though my oncologist said it takes about 6 months for side effects to settle on any of the HT drugs.

I'm on zoladex and exemestane and it was a shock to the system going into a medical menopause. Things have significantly settled now and most side effects are very manageable. You just have to slowly get used to the new you. The alternative is far worse to me..

You can also experiment with different brands - I now just stick to one brand as it agrees with me the best and my pharmacy have been brilliant about getting it for me.

There is a significant risk of recurrence if you don't take hormone therapy when you've had hormone positive cancer, so I would give it a go and see how you get on. Don't dwell on the side effects. When I started taking exemestane, I looked up reviews on Drugs.com and filtered on 10/10 scores only to get me into the right frame of mind.

Thanks Beat. 

My boyfriend of 2+ years lost his wife to BC 7 years ago. Apparently she regretted not taking the tamoxifen but who knows what would/wouldn’t have happened. so, for me, it’s non negotiable. I have to take it. I have two daughters that need me. 

I haven’t seen him for a while as i was away on holiday and strangely  wanted to see him before I started taking it. Consultant told me to wait til I get back before starting due to DVT risks. 

thanks everyone for taking the time x