Diagnosed with ILC to see radio and med onc

hi Deweydell
Just saying hi so this will pop up the top of the discussion boards for others to comment

Hi @Deweydell
Sorry it's taken a few days to find this, I sometimes turn the notifications off and didn't see youd tagged me.
I was grade three hormone positive, a tumour the size of my thumb that no one else could see and no node involvement (just the sentinel removed)
First diagnosis I had lumpectomy which was done locally, I'd have been better off chewing it out myself but that's another story. Then off to Melbourne as I wanted a DMX which no one here would do, had a sentinel node biopsy, came home had AC chemo, then mastectomy and expander reconstruction then 5 years of Tamoxifen. I couldn't afford radiotherapy.
My cancer returned in the site of the sentinel node which I think indicates it was already there, or stray cells from the original tumour moved across anyway. That was over two years ago now.
It took over a year to get my cancer diagnosed the first time and the second was the same as biopsies and scans kept coming up negative--until it came through my skin :/
My story is atypical and while I think it's a cautionary tale -- stick to your guns if you think something is wrong -- it shouldn't be taken as an indicator of how your cancer will behave.
Good luck and keep asking questions if you are not satisfied with what you are being told. MXX

Hi @Zoffiel,  congrats on maintaining a sense of humour despite your situation. Would you mind sharing details of your original ILC eg grade, hormonal status, size, nodal status (sounds negative), treatment?  I've recently been diagnosed with ILC and referred to radio and med oncologists due to slim margins post-mastectomy (ER+, PR+, HER2-, multifocal over large area, 16+ tumours but each small ie <1cm), SN x1negative.  I am being told I am at a very low risk of recurrence and that risks of AIs and radiotherapy probably outway the benefits. Risk assessment and views being based on each tumour being very small.  They may be right but stories like yours make me nervous.  Thanks and best wishes through all of this.