What is the best diagnostic test(s) to determine if you have IBC

Hi K,

 I am so sorry that your daughter is going through this.  As for me,  the mammogram didn't show my IBC either.  The tests that were more conclusive were MRI and Biopsy.  The biopsy was actually the clincher  that not only confirmed cancer,but the kind of the cancer. The PET was done later to determine if my cancer had spread. 

 I agree with ibcspouse, find a clinic that knows IBC.  Many doctors have not seen IBC and may misdiagnose it as an infection.

 Hope this helps,

Deb 

I believe like all Breast Cancer there are different ways to be tested and there are some test that just for some odd reason won't show up if cancer is present for some and some that will... With that being said I recently was told by a Dr. at M.D. Anderson; via e-mail below copied and pasted the following.....

"Thus, since IBC does not occur as a definable breast lump or mass, and
because its symptoms are not typical signs of breast cancer, the standard
tests for breast cancer (including punch or needle biopsies) would not be
effective in determining the presence of IBC. Only a surgical biopsy,
according to the information in given above, is considered to be able to
detect the presence (or the absence) of IBC."

I pray that she is  B9.

Yeah and it's scary. I hear one thing and than another. I am sorry if this is the wrong information, I was just repeating (copy/pasting) what information I was given to better help me get a DX from a BS. Although it did come from M. D. Anderson I would be more inclined to listen to the "Chief IBC BS" myself.

I want to CORRECT myself. "Sometimes the only way to find the underlining cancer of IDC or ILC is to do the surgical, but the punch is the pathological way of dx's the IBC part. If you have IBC, you have either IDC or ILC.  and the e-mail I was written came from the information officer at MDA. It seems he had written it in the wrong way which confused me.

I do hope that has not caused any unnecessary worry or any problems.I Apologize.

I guess it's like the old saying "Breast Cancer doesn't hurt" or "Check for a lump" or "You can't have cancer you're too young".... There is something new to learn all the time or to find out really isn't good/bad....

Thank you ibcspouse.

You found a lump and was told you had Inflammatory Breast Cancer (IBC)?  They "cut out the cancer" but did not do a mastectomy?  No neoadjuvant chemo only radiation?  ER/PR and HER2 status?

IBC does not present as a 'lump' - it presents as 'bands' or 'nests'.  Yes, it usually does not show on mammos or US so biopsies are meeded.   Neoadjuvant chemo (chemo BEFORE surgery) is done to get it to hopefully shrink and form a 'lump' with margins so the surgeon can get it.  I have never heard of anyone not having a mastectomy with IBC or not doing chemo.  Most I know have done 2 different types of chemo before sirgery and gone on to rads after.  My TX plan was different a bit - I did 4 DD A/C neoadjuvant followed 2 weeks later with surgery.  3 weeks after surgery I did 12 weekly Taxol followed a week later with 25 rads.