ER positive cancers

Hi Sparkle498uk 

Sorry you are feeling anxious about recurrence and/or spread of oestrogen positive cancer, many years down the line. Thought I’d pop in to say, you’re not alone! I think many people manage to embrace the ‘I’m cancer free now’ feeling and don’t think much about possible recurrence or secondaries in the future. I’m not one of them! In my case, I feel I’d rather accept that at any time since my diagnosis 7 years ago, the best I can say is that there is currently no evidence of disease. I prefer this way of thinking because for me it’s realistic. I didn’t know I had cancer until the lump was 13mm in size so I probably had it for quite a while. I was due a routine mammogram a few months after I’d found it - it would have shown up but could have been there for a couple of years, growing in a middly sort of way (as it was Grade 2) wirhout me knowing. I do worry but like you I do what I can to reduce the risk of recurrence. Being on any of the treatments can’t guarantee anything anyway - when I discussed staying on the Anastrozole for 7 rather than 5 years with the breast surgeon, he said himself that it doesn’t remove the risk, just reduces it. And as far as I’m aware, although it’s hard to get hard facts, we are still more likely NOT to get a recurrence. It’s just that a significant number do get one and the risk carries on for quite a number of years. I hold on to the fact that most don’t recur. 
Don’t suppose that’s much help! I’d also add that Future Dreams in London do a session called ‘Fear of recurrence’ and the one I went to was very well attended so clearly a good number of us have this fear. 
And lastly, I’d say that as in so much of medicine, even the most expert experts just don’t know quite a lot of the time. Understanding of the mechanics of cancer development is changing all the time. As are treatments. I do feel lucky that I was diagnosed in 2018 rather than a few decades ago. Love and hugs, HFxx

Hi Sparkle!

totally understand your concerns - I’m only a few years since diagnosis and often think about recurrence.  But you asked about long-term survivors: my mum was diagnosed with ER-positive cancer in 1993.  So it’s over 27 years since she came off tamoxifen and she’s still going strong!  I hope that helps.  

Thanks so much for commenting. Your words have made me feel better xx 

Wow that’s amazing about your mum, thank you for commenting xx 

I worry too, predict goes to 15 years but there are no recurrence stats.  Many women on here have posted about giving up the inhibitors due to minor % gain over the 15 yr period.  

I really want to see a longer period than 15, and recurrence stats - these are wildly different.  How do we get these ?

I want to take the inhibitors for 10 yrs, but my joints are sore I’m walking funny I’m sure, 

my cousin is almost 20 yrs clear so I cling to that x

3 yrs clear, relief and joy 

When asking my oncologist she just said they don’t have that data. 

Im on letrozole for 10 years and same, sore, stiff joints but this has disappeared since being on Abemaciclib which has an anti inflammatory effect I believe. 

Very happy to hear your cousin is 20 years clear and you are 3 years clear. Hoping and praying we are all cancer free for a very very long time. 

Interesting you said that about Abemaciclib, Sparkle498uk as I was off it due to a chest infection for 5 days, feet and ankles started to improve a wee bit (they are VERY stiff and painful) and it got worse a couple of days when I returned, I’m on Exemestane which I think has a little steroid in it?

hugs xxx

Oh really there’s definitely a correlation there.