Chemo didn't work as well as hoped

SAR843

Hi Everyone - I haven't posted on here for a while, but coming here when I was first diagnosed helped me a lot, and I'm hoping it helps me again. I was diagnosed with IBC on 2/28/12. I just had my 8th and final chemo last Tues. The plan was to wait three weeks, have a bilateral mastectomy, then 6 weeks of radiation, then hormone therapy. A few days before my last chemo my onc called to tell me that she, my surgeon, and the tumor board all feel that the chemo has not worked as well as they had hoped and they fear that if they do surgery now it will lead to complications with healing. So, the new plan is to start hormone therapy first, then (hopefully) have the surgery in the fall. I thought I was okay with this, but the more I think about it the more scared I get. I had a punch biopsy last week, to see how much cancer is left in the skin. I also had another biopsy this week b/c two suspicious spots were found on the other breast. I thought getting through chemo would be the hard part, but now it seems like things are getting worse. I had a CT and bone scan a few days ago and scared about what they're going to find. I'm only 30 years old and scared out of my mind. 

ibcmets

SAR843,

I was diagnosed 3 years ago ibc with spinal bone mets, also and idc 3.5cm tumor all at once.  At first I did not think I was going to have surgery.  I did 8 months of TAC chemo and then on hormone therapy (Femara).  My onc waited a year of being stable before he had me do surgery.  I then had BMX/Recon.

I've done Zometa monthly for the last 3 years, Lupron to suppress estrogen for 2 years an Femara daily.  Some doctors do not believe in doing surgery at stage IV unless absolutely necessary.  Other's look at it cautiously, but will recommend surgery if you are stable.

I'm glad I had the surgery and my last 3 Pet scans have been clean showing stable bone mets only.  Radiation was not recommended maybe because all other treatment worked well for me.  I still do scans every 6 months.

Hope your doctors can get you stable and doing well.

Terri