6mm removed WLE, clear margins. X3 lymph nodes tested, all clear. ER8/8. Grade 1, stage 1.
Didn’t fancy AI which was prescribed by surgeon so checked with my oncologist who said my % benefit was pretty low and then said “I wouldn’t take it either if I were you”.
2 Likes
Can I ask if the surgeon gave you the 8/8, and stage information please? (In other words, I’m asking how did you find out information?)
Thanks.
Hi
Just to jump in. I asked for a copy of my pathology report after my MRI scan and biopsy which had that hormone info in.
Stage wasn’t given but I looked it up on this site I think and worked it it based on size and spread. It changed after surgery as size was smaller.
I think the consultant also put it in a letter to my GP. x
1 Like
When I asked the oncologist what % difference does taking AI’s mean for my risk, he said they can’t give me that answer, I understand why but I’d have still liked to have some kind of a ballpark figure. I changed from Letrozole to Anastrozole because of a constantly upset stomach and nausea, but it’s been the same, in fact I stopped the Anastrozole a week ago to see if things resolved and they haven’t. I know they won’t be happy when I see them next week, but how do I know if it’s the AI’s if I don’t pause…I’ve tried really hard by going to the gym every week to deal with joint pains, but the stomach thing I can’t control. I’ve got a 17% chance of recurrence and I didn’t have chemo so I know I should take them, having bisphosphonate infusions, but who knows…so hard to know what to do when they leave it to you to decide. I told the oncologist I could understand why some people choose to have a shorter life, he didnt comment, sonetimes you feel like you’re speaking a different language, it’s very hard, wishing you all luck xx
1 Like
Good luck Polly x
1 Like
I was give my Allred score (er+ 8/8, pr+ 6/8, HER2-), stage and grade at my biopsy results appointment and, as the results can change once the tumour is out and more rigorously tested, I checked them against the post-surgery histology report and, other than the size (went up from 9mm to 14 mm) it was still the same.
You may have to ask (aka badger) your surgeon’s secretary or your BC nurse for a copy of your histology report but I think it’s worth having. Mine didn’t have a ki67 score but did tell me there was no lymphoma-vascular invasion (LVI) which I was grateful to know.
1 Like
I just think consultants should tell you everything about your condition.
I wasn’t even told I was on a low risk pathway. I’d have loved to have known that once they had the results, rather than waiting months until a letter was written to the GP practice, like it had nothing to do with me.
Life goes on - and I’ve even struggled with holiday insurance because I didn’t have anything to negotiate with, like I’m a better risk than some ladies.
I’d have made the same decision.
Good health to you x
Thank you, hugs x
1 Like
Yes, all the details were on a form given to me by the surgeon and in a follow up letter from him after surgery.
I met the oncologist at my planning appointment for radiotherapy and had a follow up appointment with her a month or so later.
Because I’d expressed a wish not to take AI, I had radiation to the whole breast rather than just the section from where the lump was removed (St James Hospital, Leeds).
1 Like
Sounds like you have had great care. X
Ask your oncologist to give you the Predict Score it takes 2 minutes & gives the % benefit of taking AI’s - apparently.
I have changed from Letrozole to Exemestane this week as intolerable side effects.
There is some interesting new evidence from Dr Steve Cummings that AI’s actually offer no benefit to menopausal women who have low estrogen.
Good luck in the future.
2 Likes
Because I had limited information I kept looking on the NHS app where I read documents and one letter.
I was asked if I had any questions at the start, but how can you ask questions about a subject you know nothing about?
I then researched and joined some Facebook pages (which I came off eventually as I found it too depressing).
I knew about predict from the Facebook pages. I put in the basic diagnosis from a letter written to the GP practice and it came up with 1%.
I told the oncologist I’d been on predict and researched. She didn’t give me any further advice other than she was happy if I didn’t want to take it due to boney problems. Again the rest came from a letter from the oncologist, but at least I was copied into it. I read it through PKB.
I have time to mull it over, but I honestly don’t think I will change my mind. If I agree, I’ll walk out the door and it will become my problem then as they won’t be interested in it until routine appointments come around.
Tomorrow I start radiotherapy and I’m dreading it. I’ve had the CT scan. The couch is rather hard, I’ve discovered - at my expense.
2 Likes
She may not have said much but for me the fact that she said she was happy for you not to take it says a lot . You could always talk it through with your BCN or if you get a copy of your Pathology report ( I requested mine) then you could also speak to the Nurse on the helpline here.
Wishing you all the best with your radiotherapy - the planning appointment is usually the longest one so you won’t be lying down for as long today. xx
1 Like
I went in full to the brim with pain relief from the surgery to discover it is a completely different machine, but still with a hard couch. The knee rest is higher which did me a favour as it helped to take the pressure off my back.
It transpires that today is a longer session than the remaining ones.
The pain relief from the surgery has definitely helped. I don’t think I could have done it without it.
Currently sitting at home with an ice pack on the bottom of my back, waiting to take another shed load of pain relief 
I will try and get a pathology report when I’m over this. Thanks for the advice. It’s kind of you. X
2 Likes
Ah I think I thought when you said you had the CT scan that that must have been the long one I hope the rest are easier for your back. I also was on Co -codamol ( the weaker type) when I had mine as I had a rotator cuff injury . I was offered a Holistic Needs Assessment and requested my Pathology Report and talked it through with a BCN as part of that . Xx
I’m glad you had such great treatment x
I told everyone that I had scoliosis. 
I always ended up with the last appointment of the day. It isn’t a good time to have, in my experience.
1 Like