Hi missybb

Sorry to hear of your experience. Mine was the opposite - high grade DCIS but pathology had invasive. Like you I like to know everything and was furious when I found out the diagnosis had changed, I felt that I had been lied to and felt it very difficult to believe anyone or anything in relation to the diagnosis - it shook my trust.  having that second diagnosis threw me, I felt I was back at the beginning again.

but then I met my oncologist, he’s a breath of fresh air. He explained that they have to diagnose in accordance with original biopsies as that is all they know at that stage. He also said most invasive cancers started out as DCIS and not uncommon to find both together, mine had been there years before becoming invasive. 

That conversation was a comfort to me but I still have trust issues with the surgeon and breast nurse, I demanded to have my oncologist as clinical lead now as I trust him.

Hi Missybb and Maggiemagpie

I recently got diagnosed with DCIS via routine mammogram and biopsy.  My consultant, who is a wonderful lady, said to me and my partner I do NOT have breast cancer. You can imagine the relief! Had lumpectomy, and was then told in the centre was 4mm of invasive cells, and margins were not clear enough, so re excision on 15th July with SNB.  I am also highly emotional and very angry, and I do feel like I have been lied to.  I saw my GP and even she agreed the consultant shouldn't have told me I didn't have breast cancer!  It's a journey of worrying I think, the nature of the beast!  You feel very alone, but on here you realise you're not! 

I am struggling with being positive, constantly worrying about the future, feeling helpless as I have no control.  Emotionally it is all exhausting, but I have heard from ladies on here who have completed their treatment and are living their lives, I am sure Missybb, you and I will be doing the same!  Good luck with your journey x 

Thank you Magpiemaggie and Anxious57,

yes I was relieved thinking the ICD was smaller and that because he took 1cm all around it was wide margined. 

It has affected my trust, which is why I want the pathology report. Did either of you get yours?

I am planning to speak to the nurse on monday i just want to know how much was taken out and how much was DCIS. Must admit the 1mm margin does worry me although from what i have read there is no agreement on margins. I want to know how much extra a cavity shave is. 

Yes exactly, I felt like I was back st the beginning again. I have an oncologist appointment in a few weeks when the oncotype comes back. 

Thank you both. 

1cm seems a good margin to me. I thought they were happy with 2mm?  I also read that any margin is good as long as it is clear!  I think my margin wasn't clear on one side, hence the need for reexcision on the 15th July.  If it is clear next time, and oh I so hope it is, I wish they had taken 1cm for me on the first attempt. My dcis measured 9mm, I think they took 11mm.  I guess they are the experts, and we have to trust them. X

I did get my pathology report after my BCN demonstrated that she can’t interpret said report, she actually drew a breast on a piece of paper to demonstrate size/margins etc - she had the cancer at the bottom inner quadrant when in fact it was upper quadrant, she had margin 1mm from skin when in fact it was 11mm from skin ...I won’t bore you with the rest. Needless to say I don’t believe a word that comes out her mouth and requested pathology report from GP so that we could go over it.  

The plan was to take 1cm. Dont know how much was taken. Just that one margin was 1mm and 2 were 3mm  

Wish you good luck foe your next op. 

Thanks magpiemaggie. I am thinking of asking to go through it with BCN/surgeon. Am seeing gp this week so will talk to her.