Hi, I am 49 years old and was recently diagnosed with IBC. I was first diagnosed with Breast Cancer at the age of 31. I had a lumpectomy, lymph node dissection, and went through radiation, and was on Tamoxifen for 7 years. I was clean for 12 years until 2001 and was rediagnosed in the same breast. I then had a mastectomy and chemo (6 treatments of Taxol). In March of this year, I noticed a growth from my mastectomy scar, I thought it was maybe scar tissue, but after a couple of months I started getting shooting pains, my Dr. sent me to a surgeon for a biopsy and it came back breast cancer and also had matastized to my bones. At this same time, my left breast started swelling, and turned red and pitted and was very painful. Needless to say after seeing a different surgeon (to make a long story short). I was diagnosed with IBC. I underwent a mastectomy on the left side. I have been getting chemo since May, and I am scared to death. It seems no one knows too much about IBC. I have never been so sick in my life. I am on chemo Abraxin and Zometa. My Oncologist just started me on Avastin also. Today is the first time that I will be getting all three at the same time. I was so sick from the first treatment of Abraxin, and I dread to see how I will feel after all three treatments at once. Is there anyone out there in a similar situation that could possibly give me some advise on how to get through this?

I didn't have the chemo you've been given. I was diagnosed with IBC 10 years ago at 37 and was initially treated with Adriamyacin and Taxol together, before my mastectomy. After the surgery I had what was a common breast cancer trio at that time, CMF (Cytoxan, Methotrexate and Fluorouracil). When that was completed the radiation started. It was a long year but I made it through.

I just read your post today and wanted to check in. If you still check in here, I hope you'll respond. I know IBC is very frightening and everything you do read about it even more so. But the survival rates have improved dramatically over just the past 10-20 years!!

I was told that I also have IBC and I know it can be scarey. I am lucky though I got an oncologist that deals with the latest chemo agents out there. I hope you read all that you can find on the chemotherapy agents that your oncologist has you on. I didnt for one of the medications for chemo related side effects and now I am sorry that I didnt.
I was on that drug Neulasta. It caused me to be in the hospital for a week at a time. It caused neutropena which is a low count in your blood and for that you need to go on a very restricted diet.

Hi there. I was also told I had IBC in July 2003 when it seemed like my whole right breast got hard out of no where. After a lumpectomy in Sept 2003 and a mastectomy in 2003, I started chemo in Jan 04 and radiation while on chemo in March 04. All high stage treatments were done by June 04. I still see my oncologist for after care. I was forty two when diagnosed.

I remember being told that I had a 35% chance of making it through the treatment (1 year). I remember my immediate thoughts in my head at that were "baloney, add another 15% for my fiesty factor! I have at least a 50-50 chance."

Well, here I still am. Doing wonderfully! Have gone back to college, gotten my life back on track (I have alcoholism and addiction issues and was off the wagon during my whole treatment time) and am clean and sober almost a year now. I have my family back and we are happily repairing our relationships.

I also remember talking with my higher power when I got home (whom I call God) from that initial appt. where I was told about the 35% baloney...and I said, that I hoped - with His permission - He would allow me the chance to stay with my children (at the time 9 yrs and 4 yrs) until the day that my youngest turned 18 years old. I remember distinctly saying this out loud and saying that I would be quite troublesome if I came early but if He would please consider this request I would behave anytime I was called to go after my youngest turned 18 years old. All with His blessing of course - not my will, this was with His will. I guess this is His will, because I am still here.

I also believe I am still here, with His blessing, to share my story. I believe I made myself ill the 18 months prior to discovery - went through a very rough period getting out of a domestic violence relationship (only to enter another while dealing with cancer treatment that was even worse), also my house burning to the ground (propane company's fault), the loss of my children, arrests, - you name it, I went through it...almost all of it since 2000 too. Anyway, I want to close this by saying I have a new and joyous life. Not much money, just a little rental house, but life is grand! I am comfortable in my skin (even with a missing breast), I rely and trust in my Creator to carry me through my life, and that even when difficult things happen, I have learned there is a lesson to learn & so, not to be afraid. To trust in my Higher Power. To know I will survive and learn. I may not see it today, or even tomorrow, and it's really hard to believe when you are feeling so sick - BUT YOUR MIND IS A POWERFUL THING AND GOD'S GOAL FOR US IS TO LEARN TO USE IT TO OUR ADVANTAGE. I TALKED MYSELF INTO THAT ILLNESS - AND I TALKED AND VISUALIZED THAT C CRAP OUT OF MY BODY AND MY WAY OF RESPONDING TO THE WORLD. WHEN I GOT RADIATION AND CHEMO I BELIEVED I WAS GETTING WASHED CLEAN OF THE C CELLS. I AM HAPPY THAT I AM STILL HEAR TO TELL YOU ABOUT IT. IN DECEMBER 2007 - IT WILL BE 5 YEARS SINCE MY MASTECTOMY. CONVINCE YOURSELF THE MEDICINES ARE WORKING AND TRUST THAT YOUR CREATOR IS WORKING IN YOUR BEST INTEREST FOR WHAT YOU NEED TO LEARN. GOOD LUCK AND GOD BLESS AND COMFORT YOU.
EG