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IDC grade 3 ER low positive, now told TNBC

Kaz1969
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Hi everyone,

Long time lurker here but now desperately in need of some advice/support from you lovely lot.

Quick intro - diagnosed IDC grade 3 15/02 after 2 core biopsies, 16mm lump, er+ve, pr-ve, her2 unknown.

Lumpectomy SLNB and 4 lymph nodes removed 25/02.

Surgery results 10/03 - clear margins and nodes, 20mm tumour, er+ve, pr-ve, her2-ve, all very positive, surgeon happy as larry and assured me with such good outcome could not imagine chemo being necessary. Happy dances all round

Fast forward to appt with onco yesterday where I was told 6 cycles of AT recommended followed by 6 weeks of rads and hormone therapy after  Gutted is an absolute understatement. He says that due to my ER being low positive my cancer is exactly the same as TNBC and has to be treated the same.

Just feel totally blind sided, why wasn't TNBC mentioned before if low HR positivity is classed exactly the same?

After having researched till my eyes bled about HR+ve and treatment options, and come to an informed decision about not doing chemo, I am now in the horrid position of having to make a decision based on a totally new situation. I have 1 week to make up my mind .....

Sorry for babbling and thanks for reading, am just wondering if anyone else has been in the same situation regarding ER low positive and what decisions you have taken regarding treatment?

Thanks,

Kaz xx.

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    Hi Kaz,

    I'm virtually identical to you although my ER was a high positive. 19mm clear margins and negative nodes. I decided not to take the hormone therapy as I already have osteoarthritis and my joints hurt so decided for the benefit it wasn't worth it. I am now reconsidering my decision and I'm going to give it a go. I understand you are blindsided by being recommended the chemo but it will belt and brace your treatment and I doubt you'll have to have years of hormone therapy to endure as your cancer was only minimally receptive to estrogen. I know it's a massive thing to go through but try to look at the positive, that you can be cured of this and after a few months, get on with your life. Best wishes, sweet ️

    Jane xx

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    Hi,

    Have they mentioned too you about sending the Tumor to America for testing? It's called Oncotype DX they test the Genes and give you a Score to see if Chemo is beneficial. I am not sure that will of your Breat cancer type is one the Can't test.  Maybe worth a Chat or a Google. 
     

    Unfortunatly I know how you feel, I had the same diagnosis as you although I had chemo because the Grade increased to a 3 after Surgery, I didn't know the Grade could go up and Chemo was never mentioned either. 
     

    I have one cycle left of FEC-T although it isn't the most pleasent the side effects only last a week after and can be managed by your team.

    Kindest Thoughts Sarah 

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