IBC found during mastectomy sx - Shocked!

HighPlainsBarb

Hello,

We had a big shock this week when our oncologist told us that the pathology report from my bilateral mastectomy found IBC in my right breast. I am Triple Neg, on my 2nd recurrence, have already had lumpectomy, rads.  My concern here is that we did the sx prior to chemo which seems to be opposite to what is usually done with IBC.Since we did whole breast rads after the lumpectomy, additional rads may not be an option. Any thoughts on chemo post sx with IBC?

Barb

Dlia

Barb,  What do they do now after the mastectomy?

mrsnjband

I think I would contact MD Anderson IBC clinic. nj

Faith316

I agree.  Contact MDA.  I had already had chemo and was in the midst of 30 rads tx for my initial dx of IDC and DCIS when I was dx with IBC.  They changed me to different chemo and I have now been NED for 2-1/2 years.  They would not let me have rads again since I had such a high dose the first time.  Good luck to you.  Let us know when you find out more.

Kicks

I had 4 A/C before mast. and 12 weekly Taxol after, followed by 2w5 rads.

ma111

If they would have done the chemo first they might not have found it as chemo shrinks things. Usually the skin involvement is considered mets to the skin and stage III because of that. Glad you had bilateral mastectomy. Your chemo will depend on what you already have had. If you have not had Taxotere and Carboplatin, that may be next. That was my first chemo.

anonymice

Do not panic....the majority of folks with IBC, even after having the neoadjuvant chemo (before surgery chemo), have reduced the size of the IBC tumor but not had a total pathological response (i.e. NO cancer) - their pathology reports show some cells left so they have more chemo.  Your IBC is very unlikely to be advanced because they would not have missed it visually.  So many, many people have been in your shoes but absolutely DO go to one of the IBC-specializing clinics to learn proper next steps.