Hi anyone know of a top UK IBC specialist? I have had 4 different breast consultants look at my condition and all 4 say it’s not IBC. I am still in doubt. Had it now since last June and symptoms still there with no improvement. Symptoms include: breast pain, weird looking red spot like marks that come then fade to leave scars, slightly heavier breast, different coloured areola, slightly raised hair follicles, red area that is only present when I get showers so comes up with heat, raised node in armpit for 7 months. Also got lots of other weird symptoms around my body including: tiredness, bone pains, muscle aches, sweating, strange heart rate. Had lots of tests, bloods, mri scans, 2 mammograms, lots of ultra sounds for armpit, 2 biopsies of which are core and the skin one, still no joy. Seen 4 different consultants too… Sick of not understanding what is wrong, so need the best of the best now. Any recommendations please?
Hi Westmids
I am sorry you are so stressed out and worried at the moment. I don’t know of any particular IBC specialists but I think you need to ask all these questions to your GP and see if he/she can help in any way. I know it is very hard to diagnose it took me a year of pestering to get my diagnosis. My breast shrunk instead of enlarged which is a rare symptom at diagnosis it was half the size of the other. It had a small red patch & no orange peel. Mammogram clear, 6 biopsies, ultrasound clear. But it did show on MRI. I did not have flu like symptoms, aches & pains which may mean it could be some sort of infection, perhaps ? As there are lots of benign breast problems. I have now successfully finished all treatment and 2 years on from diagnosis. Hope you get the answers you want, but I think you should return to see your GP and let them know how you are feeling. X
Yes, you can see at the London breast institute.
They are great and he’s really good.
Alicki
Hello,
I am/was in the same position and went to the extent of having a breast reduction which came back with fibrocystic breasts and hyperplasia of the skin and unspecific inflammatory infiltrat on both sides.
I have developed fatty lymph nodes and have a cyst on my kidney and abdominal wall and have lost 18 kilos. NO idea what is wrong. Sick with worry and just wondering if I am not going to pop it.
Has lymphoma been ruled out in your case?
Alicki
Hi
I have edited the Professor’s name from your recent post. We are not allowed to name health professionals on this site, but you could share this information through private messages.
Best wishes
Janet
BCC Moderator