Anyone relate?

Tvaliente

Woke up with an inflamed breast on 1/18/12. One opiinion has me with IDC. The second opinion is clinically diagnosing me with IBC. I am er/pr+, her2-, with two small tumors and clear bone scan and lymph nodes. Started chemo two weeks ago and go for 2nd treatment next week. Has anyone had same? What type of treatment did you receive? Having a hard time thinking about what's coming.

Tvaliente

Hi Bonnie. I've only had one chemo so far. My next one is this thurs march 22. I wound up getting pneumonia right after my first and was in the hosp for 5 days. My wbc went down to 1.1 and I was in reverse isolation. If it weren't for the pneumonia, Im pretty sure that I would have done okay with the chemo. My hair started coming out this week. I know after everything so far that it shouldn't bother me, but it does. I keep making deals with God!! My thought are so random. Today is actually my first good day. I have great energy. I'm also getting cytoxan and adriamycin for the first 4 then taxotere for the last 4 chemos. Everyone keeps telling me to take one day at a time but I keep thinking about the future. I can't help it. Mentally I am still having a hard time accepting that I have cancer.

ibcmets

Tvaliente,

I'm glad your bone scans & nodes were clean.  I did not even know I was ill, except for an itchy bug bite rash on my breast.  I was diagnosed ibc with bone mets and found I had lymph node involvement as well as an idc 3.5 cm tumor.

I had 8 months of tac chemo once every 3 weeks & monthly zometa for the bones.  After chemo, went on Femara due to being ER/PR+.  A year after being stable, I had BMX/Recon.  Almost 3 years later, I'm doing well.  I did not do radiation due to  being stage IV from the start.  They may want to add radiation after surgery to someone who has not spread to prevent reoccurrence.

This is a hard diagnosis to accept.  Actually denial helped me a lot in the beginning (although I followed my onc's instructions).  You will have to live more day to day.  I used to know when I was going to be feeling bad on treatment & had 1 good week a month; but I got through it.  With all this medication you are on, you may get some SE's.  I found a lot of help on this site to combat some of my SE's.  Keep close contact with your onc office.

I wish you well on treatment & recovery.

Terri

Faith316

It is so hard at the beginning to not think negative all the time and just be sure that life as you know it is over, never to return again.  We've all been there.  But, it DOES get better.

My story in a nutshell is as follows.  I was dx with IDC and DCIS in March 2008.  Had lumpectomy and axillary node dissection. 2/8 nodes malignant.  Did 4 rounds of AC and then 12 weekly Taxol with concurrent Herceptin.  In November 2008, stopped Taxol and stayed on Herceptin with the plan being to complete a full year of it.  Started my 30 rads tx in Dec. 2008.  In January while still in the midst of rads, starting seeing a rash on my breast.  Assumed it was radiation related.  Continued with rads through mid-Feb 2009.  Rash growing, also my pores were large and dark like tanned skin with dark pores.  I started reading and thought I might have IBC.  All my doctors said no way.  You have had too much chemo and rads to have cancer starting up while still in active treatment.

Rash continued, peau d'orange, thickened skin, hot swollen breast.  Everyone still thought it wasn't IBC but I finally insisted on biopsy in June 2009 and guess what?  IBC.

Referred to MD Anderson in  July 2009.  Stopped Herceptin (had been on it for 9 months by this time) and switched me to Tykerb and Xeloda.  Stayed on both drugs for 6 months until Jan. 2010.  Stopped Xeloda, had a uni-mx and another node dissection.  All pathology showed NED.  Stayed on Tykerb and still on it (for 2-1/2 years so far).  My last scan in january of this year still shows NED.

My life, though never totally without thinking about cancer, is for the most part back to normal.  I go to work teaching school every day.  I go shopping, attend my son's sporting events, go out to dinner with friends, plan vacations.  

The beginning is hard but it won't always be this way.  It gets to the point where you CAN think of something other than cancer and your mortality.  Life goes on.

It is normal to think the worst when you are first dx.  We all do that, but just remember, it will get easier. 

Hope this helps.  Good luck to you.