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scared about distant recurrance

6 REPLIES 6
2000yrsBC
Member

Re: scared about distant recurrance

Hello Sonia,

 

I didn't have a lump but something felt not right. It was found almost immediately in January last year, and was tiny. Luckily, it hadn't spread and i had a lumpectomy and radiotherapy. I'm now taking Exemestane after 10 months on Letrozole, which just about crippled me.  

It all happened so quickly for me that i naievely thought once i'd had the radiotherapy it was done and dusted. Then i discovered the joys of hormone therapy! And then the likelihood of recurrence. I've only had a couple of visits back to my oncologist and it's always so rushed, so i often don't get around to talking about my concerns. I was told my prognosis was good - but when i asked what that meant exactly, i was just told to 'stay positive' so i never really understood it, and i'm still not sure what it meant.

My concern - on down days like lately, is that i'm 66 and have four years of treatment left to do. I've found the hormone treatment both physically and mentally drastic, and on bad days I wonder if it's worth the treatment at 66 - if what might be my last 4 years! feel this awful, and the prospect of recurrence beyond it.

 

Sorry - i doubt this will reassure you about your situation, but i just wanted you to know that I don't think it's unusual to feel this way, when all the major work has been done and we're out of hospital hands. You aren't alone!

 

ann-m
Community Champion

Re: scared about distant recurrance

There's no reason not to be positive, Sonia, but we can all take a visit to the dark side occasionally! take care.
ann x
Sonia C
Member

Re: scared about distant recurrance

Thanks so much Ann, I really appreciate your comments & for giving me confidence that I have an good prognosis. I must start to be a bit more positive, not like me really to look on the dark side of things! Have a lovely weekend, come rain, snow or sunshine! S xx
ann-m
Community Champion

Re: scared about distant recurrance

Well, there really is not much in it, Sonia, thankfully you found it & acted on it - so, you dealt with it, with an 'excellent' prognosis to boot!
I did not have the oncotest, mine was picked up on screening - so, unlike you, I didn't even find it. I probably didn't fit the criteria, but I'm fine with that as I cant see that it would have changed anything.
Its good you have had that test, as at least its additional info that it is as good as it can be.
ann x
Sonia C
Member

Re: scared about distant recurrance

Thank you Ann. I beat myself up because I didn't find the lump earlier & feel that if it was smaller my recurrance % would be less. Did you have the oncotype test? S x
ann-m
Community Champion

Re: scared about distant recurrance

Hi Sonia,

My bc was was smaller than yours - 7mms, but otherwise similar, stats can seem scary at times, but it's only a general indicator based on past recovery data that can be quite old. Mine is 95% at 10 years & I tell myself, it was caught early, clear margins & nodes, so I'll take that. I'm sure we'll both be knocking around for many more years yet!

ann x

Sonia C
Member

scared about distant recurrance

I need some words if wisdom! Completed surgery (mastectomy) for 2cm, grade 2, hormone receptive tumour. Had oncotype score of 15 which means no chemotherapy just Tamoxifen. Stupidly asked what my risk of distant recurrance was & was told 10% over a 10 year period. I was shocked at how high this was as I was expecting a lower % after the oncotype score. Oncologist told me this was low but I cannot stop thinking of that 10%. I know I should be focusing on the 90% that it wont come back but I just feel so scared. Would be good to hear from anyone who has a few words of wisdom/is in the same position ect. Than you. S xx