Hi All
I’m 7 years clear and aged 60. I had grade 3 invasive carcinoma with high grade DCIS. Single mastectomy and axillary node clearance. HER positive.
On the whole I bounced back OK. I still work as a self employed gardener though I’m trying to go part time and I try and lead an active life where possible. I’m a keen cyclist and do regular exercise alongside work.
However the one constant struggle that has been going on since the start has been the hormone therapy. It’s always the same issue which is life affecting bone and joint pain.
I tried letrozole to begin with but that was awful, I couldn’t move. Then they put me on exemestane which wasn’t too bad until about 3 years in when the pain became unbearable.
I’ve now been on tamoxifen for 2.5 years and it’s the same old story. In fact I hate it. I’m a puddle most of the time, often feel like a zombie but the pain has become life affecting again.
I had a 6 week break over Christmas and we went away just after and I felt significantly better. I’m back on it again and the first 10 days was like being hit by a bus. It has calmed a bit now.
I’ve been back in to see the surgeon who is great and has organised a bone scan and a CT but she is very much of the opinion that tamoxifen doesn’t cause bone pain. I’m not sure I agree.
I know for a fact that the scans will show some age/job related degeneration and the pain will be blamed on that. Although I’m not sure it’s the main cause I am certain Tamoxifen amplifies exisiting issues.Has anyone been able to find out their risk/benefit in continuing with meds and what would I ask for? I only need to get through another 2.5 years realistically but I can’t function as I am.
Long post, apologies but thank you
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Hi @mazthegardener, when I got a second opinion about hormone therapy I was told that 7 years is enough to reduce risk of recurrence and the remaining three years (if prescribed) is to prevent a new primary. I was also told that the hormone therapy has a residual benefit i.e. it still impacts on ones system after stopping. So if you have managed 7 years already it may be helpful to discuss the risks/benefits of stopping with your oncologist. You have done well to last this long and I commend your fortitude. I gave up in October 24 after 11 months because of the side effects. It is still affecting me 3 months on. Taking these drugs is a matter of patient choice so you can stop if you wish and feel comfortable doing so. I wish you well. Love Tulip x
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Thank you Tulip29. That’s helpful advice. As I’m so far down the line I have sort of been discharged but with a finger in the pie still. My original oncologist has moved on sadly but I think I’m going to keep on with this now I am back in the system with scans etc
I think I just need to ask the question and ask for the MDT to fathom out the risk/benefit, whether I could reduce the dose or whether there is an alternative.
If I didn’t have the whole tamoxifen thing hanging over me I would know for sure it’s age and age related issues and a bit of arthritis which I could then hopefully address a bit more.
It’s all such a muddle!
Anyway, thanks again. Keep well and sending my good wishes x
Hi @mazthegardener
I’m been on Letrozole for a year with terrible aches and pains that make day to day life uncomfortable. I take paracetamol which helps, use Epsom salts, arnica gel and occasionally codeine. I have some neck pain which showed as 2 bulging discs but also have significant hip pain. I walk a lot and do yoga, tai chi and swim. Some exercise can help but the more I do the more the pain is there. I have a call with oncology to discuss a 4/6 week break to see if the pain is the medication or something else. I was told to take for 5 years.
I talked to 2 ladies today who both struggled on Letrozole, one changed to Tamoxifen the other the Exemestane. Both were menopausal. The first has now finished after 5 years, she was asked to continue for 2 more years but declined after they looked at her Predict score. The second is still in her first year.
Hopefully you can ask your MDT to look at Predict and see if you will benefit. Let us know how you get on.
Hi
I’m reasssured to hear that I’m not imagining all this, although it’s sad to hear how many people have problems.
I am going to start asking a few more questions and will ask for a risk/benefit analysis.
I think a balance needs to be struck for us all so that we can move on and enjoy life more.
I find that I feel much better if I exercise and I’ve got a physical job (too physical sometimes ) but I have to have a certain amount of mobility to exercise in the first place so it’s a cyclical.
They’ll definitely blame arthritis or something but I don’t see how you can get that all over your whole body at once and then it wax and wane!
Anyway, watch this spa[quote=“naughty_boob, post:4, topic:129173, full:true”]
Hi @mazthegardener
I’m been on Letrozole for a year with terrible aches and pains that make day to day life uncomfortable. I take paracetamol which helps, use Epsom salts, arnica gel and occasionally codeine. I have some neck pain which showed as 2 bulging discs but also have significant hip pain. I walk a lot and do yoga, tai chi and swim. Some exercise can help but the more I do the more the pain is there. I have a call with oncology to discuss a 4/6 week break to see if the pain is the medication or something else. I was told to take for 5 years.
I talked to 2 ladies today who both struggled on Letrozole, one changed to Tamoxifen the other the Exemestane. Both were menopausal. The first has now finished after 5 years, she was asked to continue for 2 more years but declined after they looked at her Predict score. The second is still in her first year.
Hopefully you can ask your MDT to look at Predict and see if you will benefit. Let us know
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