IBC "lumps/masses"?

jewels9

Hello all,

I am wondering if the lumps/masses that form at times in those who do have IBC, "feel" and/or are characteristically different in some ways from the lumps/masses of the other types of breast cancers?  Do they demonstrate different qualities on imaging?  Any information- what if felt like, how it showed on imaging, DID it show on imaging, do these types of masses tend to be flatter and not necessdarily round?- anything about your experience if you have/had a lump/mass with IBC is greatly appreciated.

Prayers, well-wishes, and many thanks to you all....

Jewels9

Caseysmom

Jewels9:

IBC does not show up on mammograms I am not sure about MRI or PET Scans.  I do know that the only way to get the correct dx of IBC is by a biopsy.  I did not have any lump with mine.

Laura

Bonnie7927

Hi.  I was diagnosed with invasive ductal carcinoma and had a palpable large mass which did ,in fact, show up on mammogram.  In addition, I had this red/purple swelling and skin thickening on top of the mass on the outside of my breast. It was painful enough to awaken me in the night if I rolled over on it and sore to touch.  The breast specialist (surgeon) for whatever reason was not interested in the thickened and discolored area over the lump.  Because of the palpable mass and the obvious cancer on mammo, she ordered an US of the masses and did core-needle biopsies which revealed IDC.  Because my cancer was in 5 of 19 lymph nodes and I had 3 masses, I was Stage III-A.  I then had breast MRI and PET scans, both of which revealed cancer as well as the skin thickening which is seen in inflammatory breast cancer.  I went to oncologist who started my chemo treatments.  It wasn't until I changed surgeons that I was told that I had IBC.  I was shocked and could not understand why the first doctor didn't diagnois the IBC...maybe it was because I had the lumps and the Stage III diagnosis anyway.  At any rate, after I started chemo it was too late to do a skin biopsy to confirm the IBC but my new surgeon as well as my oncologist both think that I have IBC and Invasive Ductal Carcinoma.  The good news is that the chemo and treatment is the same since for the IDC and IBC since I was already a Stage III, except now I guess I'm a Stage III-B.  I have responded very well to my 8 chemo treatments and I'm waiting for mastectomy which will happen Nov. 9.  After that, I will undergo 30 radiation treatments.   I have every reason to believe (and I'm very hopeful) that I will be cured. 

The MRI and PET scan will demonstrate signs of IBC if there is skin thickening, which in my case there was.  The skin felt leather-like or wax-like..not at all like skin.  I also had changes in my nipple and areolar area.  

Caseysmom

Bonnie7927:

I'm so sorry that you had to go thru all of that.  The need for so much more research and education on this type of cancer is needed badly.  Also doctors need to be educated about IBC so many of them have never heard of or seen this type of cancer.  

God luck with  your surgery on Nov. 9th.

Hugs

Laura

txred9876

First off I wish you never had to see this forum....now that you are here there is some wonderful support. 

I had it all going on in my left breast.... IBC, 2 masses (only one showed on ct and mammo but at mastectomy was still bigger then the one they knew about which shrunk from 2cm to 1cm) and extensive high grade DCIS.

I went to multiple doctors and it was a nightmare until I got to my oncologist who took a hold of my care. They biopsied and never got a difinitive IBC diagnosis but when the redness shrank with each treatment the doctor said it was for sure IBC.

activern

Bonnie - sorry you had to go through this.  I had to push for a IBC diagnosis and confirmed with a skin biopsy.  However, my oncologist codes it as Metastatic Skin Cancer of the Breast instead of IBC - go figure.  The treatment apparently is the same.

txred9876

if you suspect IBC and your insurance will cover it you can get a second opinion at MD Andersons - morgan welch Inflammatory breast cancer clinic. They have been great with many people.