Help needed re scores

Going through breast cancer treatment Hormone therapy
1

Hi 

can anyone help me with what I should be asking when I go for my review appt on Tuesday 

background first. I was diagnosed with DCIS in November. First WLE in December didn’t get clear margins but I was told there we’d two small areas of invasion … very small and successfully removed … but that it was oestrogen positive. Second op in January resulted in clear margins and nothing in lymph nodes tested. I was put on anastrazole immediately which I took for 7 weeks but my mental health suffered terribly so I was allowed a 6 week break and am now due to have a review. 
since then I have also had my course of radiotherapy 

I was never given any scores or numbers despite asking. The best I got when I pushed and pushed was that the oncologist said my risk of reoccurrence was 10% that radiotherapy halved that and hormone therapy halved it again but she couldn’t tell me where any of those numbers came from

i did the NHS predict at home which indicated a benefit of below 1% for hormone therapy. But I know that’s a blunt edged sword 

so what numbers or scores should I be asking for before I make my final decision 

thanks in advance 

2

Hi Dolly

Predict is a useful guide. There’s also the Nottingham Prognostic Indicator which you can google and use if you know the size and grade of the tumour. 

Nowadays some tumours are sent to America to have a genetic test ( Oncodx) done on them. Its usually reserved for chemo possible cases. I had it done and my recurrence score of 12 didn’t warrant chemo despite a grade 3.

You will probably be encouraged to take hormonal therapy for 5 years and it might be suggested that you try tamoxifen instead of an AI as they work differently. I am on a 6 week break too, from letrozole. This is because of utis. Aromatase inhibitors play havoc with the genitourinary tract .

Good luck, Dolly.

Love, Margarita x

3

Hi Dolly

I would definitely ask for your Allred score ( this relates to the ER state) mine was 7/8 so my oncstrongly advised taking letrozole…I wish you well 

4

Ring BCN they gave me the right questions? to ask in order to obtain your own information.

Also you can request your entire medical file through the post for free. 

Then ring BCN all your info is right there then