Hi Barbs,

I can umderstand that you are upset by the lack of information that you were given - I would be too. I hope that you can get more information tomorrow, when you talk to your breast care nurse.

Keeping my fingers crossed for good news.

Kind regards,

Jolamine xx

Thank you  

I spoke to the nurse today and she was able to clarify that my DCIS was deemed as low grade, which as you can imagine I was very pleased with.  It's unfortunate that no one made it clear to me at my consultation.

 I asked her about the size of what they had found but she couldn't say because it was in bursts. I don't know what that means, but I'm sure that I am more fortunate than most, so thanks again xx

Thanks Barbs, yes, it's really important to be clearly told grade and type. I'm so pleased you found out today that it's low grade xx

HI Barbs, 

I am sure that you feel much better about this, now that it's been confirmed that your DCIS is low grade. I am not totally clear what the nurse meant about the size, but it sounds as if there were a few small areas affected - hence the bursts. Never be afraid to question anything that you don't fully understand.

Kind regards,

Jolamine xx

Thanks my friend xx

I'm currently recovering after 2nd op (total ductectomy discovered early cancer non discoverable on  mamogram/ ultrasound) awaiting 2nd histolog now. I found the passing on of medical info quite hit and miss. I was discharged with no information whatsover! I had no idea what to do about stitches etc etc My GP kindly provided my histology report after gentle pleading sameday circumventing all sorts of nhs red tape and being passes around from pillar to post to simply get my own notes! I recommend being your own admin officer and not entirely giving up complete control. Nhs are doing their best but the admin side seems pretty chaotic and in no ways streamlined. In someways you really do have to be your own advocate and researcher otherwise you feel confused and disempowered and it is exhausting! Project you- your worth it!! (Always good to learn new things- cancer- in any case even if studying birds or learning to draw would have been 1st choice!) X

It certainly does sound like you weren't given enough information in relation to your diagnosis on any findings they may have had.  It is concerning when you aren't given the information that you so rightly should have.  Any information that you might research alone might not be useful to you as an individual as I have found in my case.

My GP wasn't even aware of my operation recently when we spoke on the phone.  The details are now on my GP records that I have been able to access through the NHS App.  That said, it just says that it was a lumpectomy of a cancenoma and that it is Significante with Active status. I am looking at the wider picture and trying to focus on the fact that it has been removed, and not looking at anything other than it is there should I have any further concerns.  I hope that you are able to get access to your records for yourself to put your mind at rest.  Best wishes xx