possible IBC?

[cat nj]

Had axillary lymph node excision to find out why my arm had been swollen for 3 months and and more recent: swelling in breast, swollen and painful lymphs. Pathology report says cancer. "extensive involvement of matted nodes, high grade, poorly differentiated... tumor necrosis." Tumor markers not give definite primary location. (AE1/AE3 pos; CK7 pos; CA125 pos; CK20 neg; CK5, 6 pos; ER neg; PR neg; GCDFP-15 neg) Surgeon suspects breast cancer. Nothing showing on diagnostic mammogram due to extremely dense tissue. Nothing showed on ultrasound before surgery.  Before surgery, surgeon commented on orange peel look of the breast. I don't detect redness or warmth.  Is he possibly thinking Inflammatory Breast Cancer?
My swelling has decreased some since surgery, but still noticeable.

[CCF-RN,MSN-JS]

Dear cat nj, Inflammatory breast cancer has certain features that distinguish it from other types of breast cancer, particularly redness of the skin.  The redness is caused by cancer cells in the lymph vessels of the skin.  Don't confuse the lymph vessels with the lymph nodes we are referring to two different things.  I don't think he is thinking specifically inflammatory breast cancer.  

The pathology report describes the cells as poorly differentiated, this means the cells don't resemble normal cells and it makes it difficult to be sure where the cancer originated.  The testing at this point will be focused on trying to find the primary site, or the "clues" that are found through testing are gathered to determine the most likely primary site, and treatment is then recommended.

[highaim]

I feel for you my dear! It must be awful to have cancer and not know what kind.......

I have IBC. I had a slight reddish tone....but I don't think that everyone who has IBC has this. The 'orange peel' is just as characteristic of IBC as is the redness. Some people have IBC and have no clinical symptoms/signs at all! And I imagine if you had cancer other than breast cancer....it would show up in radiology. My IBC didn't show up on any of the pictures.......only enlarged lymph nodes.

Sounds like you're going to have to do a lot of research and self-advocacy because the doctors don't know either........

If you want to e-mail me....please do. ***@****

[highaim]

I feel for you my dear! It must be awful to have cancer and not know what kind.......

I have IBC. I had a slight reddish tone....but I don't think that everyone who has IBC has this. The 'orange peel' is just as characteristic of IBC as is the redness. Some people have IBC and have no clinical symptoms/signs at all! And I imagine if you had cancer other than breast cancer....it would show up in radiology. My IBC didn't show up on any of the pictures.......only enlarged lymph nodes.

Sounds like you're going to have to do a lot of research and self-advocacy because the doctors don't know either........

If you want to e-mail me....please do. ***@****

[deky]

Please be an advocate for yourself.  Ask lots of questions, do research and don't quit until you have the answers and a second or third opinion.  Inflammatory breast cancer is difficult to diagnose but a very aggressive cancer.  Do not wait and see.