Rang the nurse yesterday and got a call back this morning. She confirmed what the consultant said, but made it clearer that although it is a carcinoma, its of the connective tissue (just underneath the skin) rather than of the actual breast tissue, so its not 'proper' breast cancer if you like. She also confirmed its local and would not spread but they still need to remove it.
So big relief its not true breast cancer, but bit of a bugger that a fourth round of surgery is coming! Thanks to all of you that have provided advice, this site is a godsend, don't know what I would have done without it over the past few days. Brings it home to you how many other people are going through the same thing.
I know what you mean when you say you feel stupid, please don't (easier said than done I know ). Yvonne is right, call the breast care nurse. Write down what you want to ask first. Get on that phone first thing tomorrow .
Alice x : )
Please don't feel silly coming away from appointments not fully understanding what you were told,after all you are not a consultant. I am sure you are not alone, as you say you were in shock. I had taken my husband along with me when I was DX'd and I went armed with questions but I still felt I hadn't asked enough so the next day I rang the BC nurse up, she was really good and went through everything again.
You may even be able to have another face to face appointment with your oncologist to go through things, please pick up that phone the BC nurses are trained to care for you and your concerns, no question too silly either!
Im sure the breast nurses will understand your situation, especially if the consultant isnt very forthcoming with information. Dont feel stupid, maybe if you understand more you will able to find out exactly whats happening.
Good luck let me know how you get on
Thanks for your reply, I've thought about ringing the nurses and I should just get on with it but feel a bit stupid for coming away from the appointment with no clear understanding, and also not sure I want to hear what they've got to say!
My consultant was using terms like carcinoma, soft tissue tumour, local etc., and when I asked if I should be worried, he said no and was quite casual about it all, which is fine for him but didn't really reassure me! I appreciate they're busy but it was a bit like a conveyor belt system.
Will try and pluck up the guts to pick the phone up!
I think if I were you I would contact the breast care nurses at the hospital to try to find out a bit more about it. If you can find out what type of cancer you have you will be able to ask some ladies on here your questions. Your prognosis does sound good and maybe they can reassure you further.
Let us know how you get on
I have posted this on behalf of new user Andrea
I had a lump removed in 2005 which was in the connective tissue and therefore fairly near the surface. I was told at the time it was nothing to worry about, however it came back with a vengeance and it was removed again in December 2007.
The results of this recommended further surgery to get a clear margin, although I was told this was nothing 'sinister' as they put it. Had the surgery two weeks ago. However, went for the results yesterday thinking it would be fine and I would be discharged, but apparently they need to take yet more out. When I said to the consultant, this is a benign lump isn't it, he said it was a carcinoma but local so wouldn't spread. However they are referring me to a specailist at Wythenshawe and I'll need more surgery and possibly radiation therapy.
So, sorry this is so long but not sure how to feel about this - the carcinoma bit is scary but the prognosis sounds good? Wish I'd asked more at the appointment but the C word shocked me that much as I wasn't expecting it. Anyone else had any similar experiences?