What to ask doctors?????

Hi everyone, I’m not really sure whether I am on the right forum but here goes…In January I noticed a small spot on my right breast. Within just a few days it had broken out into a small, shallow ulcer and then more of the same quickly appeared. I have lost count of the times I have seen my gp and have had 3 or 4 lots of antibiotics. My gp referred me to the breast clinic to rule out any underlying cause for the lesions . I was examined and had an ultrasound and nothing untoward showed up so it was decided to refer me to dermatology and a biopsy was done so they would have the result at my appointment(mammogram not done as I only had one done last July) . It was suggested that it could be a skin condition called Necrobiosis Lipoidica which is associated with diabetes and also Inflammatory Bowel Disease - I have type 2 diabetes and Ulcerative Colitis! I have developed spots on my left breast and now also on my left shin and right shoulder. I am a little worried though as I googled “Necrobiosis Lipoidica on breast” and came across IBC. Some pictures I have seen look very much like the lesions on my right breast which is now a large thickened, hardened, dark area, also quite dry. Skin does peel away leaving very red, shiny patches and since the weekend my breast has become tender.
Basically, I would like to know if IBC would be diagnosed from a u/s scan? Should I mention IBC to the dermatologist at my appointment next week and what do I need to ask? I know I am probably worring un-necessarily, after all it isn’t always a good idea to go searching for things on the internet, but when I have been on IBD and diabetes forums I haven’t been able to find any posts about NL. I am sure you ladies will be able to give me some advice and reassurance.
Thank you for reading :slight_smile:

just bumping this up, cheers

Hi cuddlymumsy welcome to the BCC forums

In addition to the peer support here you may wish to call our helpliners who may be able to point you in the direction of some information regarding your query, you can call on 0808 800 6000, weekdays 9-5 and Sat 9-2.

Alternatively we have an ‘Ask the Nurse’ service whereby you can send in your query by email to our team of clinical nurse specialists which you can access here:

breastcancercare.org.uk/breast-cancer-services/ask-nurse

Best wishes
Lucy

Hi cuddlymumsy

I was diagnosed with IBC last October and the ultra sound could see a thickening of the skin but it was the core biopsy that confirmed the find, nothing showed on the mammogram I had. My main symptoms was what I thought was a lump behind the nipple but it turned out it was where the skin had thickened and my skin looked like orange peel, I had no lumps as such but they could see a swelling in one of my lymph nodes which they did a needle aspiration on and also confirmed it was there too. The doc said on my first visit that he thought it was IBC but the biopsy would be required to be certain. Although it is rare, I think they can spot it at the breast clinics but perhaps mention it when you see dermatologist and hopefully they can put your mind at rest.

Weme

I had my appointment at the dermatology clinic today and the consultant says she thinks I have Pyoderma Gangrenosum and not Necrobiosis Lipoidica as suggested at the breast clinic. She feels that IBC would have been picked up on the u/s scan and also the biopsy and although I have to have more biopsies done she has put my mind at ease…well a bit at least! I guess that until I get a definite dx then I will still have a little niggling worry at the back of my mind.

Hi Cuddlymumsy

I was diagnosed with IBC exactly the same way as Weme in Feb this year, the ultrasound picked up skin thickening and, since noticing my boobs were different sizes at Christmas, within 1 month I had obvious lump in my breast, orange peel skin and pain. Core biopsy picked it up but I had calcification at mamogram.

Strangly enough my father had Pyoderma Gangrenosum after a triple bipass a couple of years ago; have they put you on steroids? It should respond quickly…I know it can be associated with colitis.

I hope you find the steroids work and you have Pyoderma - easier to treat and a better prognosis than IBC!