SURGERY!!!!!!!!!....Have you had this done to you?

Ok... First off. I believe you are in Ft. McMurry... Were the Dr's you saw up that way or di you make the trip to Edmonton or Calgary?

If you stayed local you may want to touch base with the local support group to see if they have any ideas on staying local vs. going to a major centre. If you have IBC you need to go to an integrated centre typically and from what I know your best chance may be Edmonton or Calgary.

http://www.willow.org/findasupportgroup#ALBERTA  Willow lists a local support group.

Now... A bumpy, nest thing under the nipple... That can descirbe so many things. From feeling the lobules in your breast to IBC. 

You said you have ALL the symptoms of IBC. Since I have seen 8 different lists, and they range from 5 symptoms to 11 symptoms. Fill me in on the current symptoms.

Where was the PET Scan done? Do you have a copy of the report? Of the disk? Get all your imaging on disk. ASAP. All copies of all reports.

Time to take a deep breath and I know I am throwing questions at you here but I think the answers may help others make suggestions as to the next step.

Can I just say... I get it. I really and truly do.

Shell

You posted in the Canadian Connection thread. *grin* I read. Even if I don't post. I read this section too. I had seen past posts. I am still in the "WTF IS THIS" stage.

I am glad you have all the CD's. It will be very handy.

Ok... Do you have a GP on top of this issue with you?

Was the surgeon a general surgeon or one specializing in breasts? I know they can be few and far between even in the larger areas.

When you were in the hospital did you have IV antibiotics as well?

As for squeezing the pus out. I have heard the opposite about that. From what I know it should be gently irrigated over squeezing it out.

Did you see the report for the "abcess"? They always send excised samples to be tested. If there was infection it would be noted in the pathology report. It might not have had cancer cells in that sample, but it should have noted more then just "not cancer".

You've said swelling. I am trying to be as detailed as I can here so I am going to ask... How much swelling? Swelling so your bra cup is too tight... or swelling to 3-5 cup sizes larger? Over how long? Has the swelling reduced at all?

You said your areola is enlarged... Is it an all over increase maintaining original shape or is there an area that has more shape distortion?

The itching and burning. Are they inside the breast, or on the skin? All over or focused in one area. Did they start before the surgery, or after the surgery? Or change - increase or decrease post surgery?

What do the ridges look like? Please descirbe them as best you can. Are they raised like welts? Are they like there is a braided area under the skin? Are they more like a smoother line like a tightly woven rope? 

Was the PET Scan done before or after surgery? Things the PET Scan will show brightly include infection but also inflammation. If the surgical excision was prior to the scan... And you've already said there is pus (which is a possible infection even if your white cells are within range)... It may be possible that the Doctor is interpreting the lit up areas as being related to this.

As for no abcess, fliuds, etc. They determined this by ultrasound? I'd not heard of a PET being used to figure this out. Did they do a CT at the same time as the PET? Who ordered the PET?

As I said. If I ask then maybe it will give a better picture to others who are reading this. 

I am confused.  Have you been diagnosed with IBC?  I think any inflammation will show up with uptake on on a PET scan. Have you been biopsied?  This came back negative?