Hello everyone
I'm a newbie on this thread, so don't really know anyone other than MaryAnn and KurriKurri who I've had the pleasure of chatting to on another thread.
I was diagnosed with inflammatory breast cancer last wednesday. I can't explain how totally gobsmacked I was, as everything I ever thought I knew about breast cancer is nothing at all like the symptoms I have.
So, the current situation stands like this. I've got two lumps, one 60mm and one 70mm, although they can't identify how much is cancer and how much is inflammation.
My CT scan results seem to show no spread beyond one lymph node that they biopsied A few tiny spots on the lungs, but nothing to indicate cancer, liver clear, bones clear.
There's something in my adrenal gland which they want to check out with MRI, but they say that the scans often throw up something in the adrenal gland and it's quite likely to be unrelated and something that I've always had, but needs to be checked out further to be sure.
They still want to do a full bone scan too, but I think this is just par for the course and no reason (at the minute) for concern.
Really my only concern now is they've booked me in for a mastectomy on 15/16 March. This is confusing me as everything I've read says chemo first, mastectomy later when it comes to IBC
From what my BCN has said, it seems this is based on some sort of clinical trial that uses the matter from the mastectomy to establish the best chemo combination to treat the cancer and that sounds great, but I'm concerned that the mastectomy first might involve a higher risk in order to establish this.
I realise a lot of the stuff I've been reading is from a year or two ago, so perhaps the thinking has changed since then?
My BCN is arranging a MRI, bone scan and a multi discipline meeting to decide which way to proceed and I should get back to see the consultant sometime around the 11th March.
I've voiced my concerns over going for the mastectomy first, before chemo and she has said that it's my treatment, I've got to be involved etc and so long as the oncologist agrees, I should be able to do chemo first, but I must realise that, if I do take that route, I might have to wait 6-8 weeks for chemo to start!
Sorry for the long post, probably not the best way to introduce myself but any advice would be hugely appreciated.