My journey with IBC, by Barb

My journey with IBC

-By Barb

When I read about Inflammatory Breast Cancer I just knew it was too late, they had done everything wrong.  I had already had surgery – a bilateral mastectomy.  To top it off I didn’t have any chemotherapy prior to surgery and they had started reconstruction at the time of the surgery.  As I became educated about IBC, I was sure I was going to die and it was going to be soon.

My oncologist wouldn’t actually say the words “Inflammatory Breast Cancer” to me until two weeks after my surgery.  When I asked him what they had found when I was in the hospital after the surgery, he said we’d discuss it in his office.  When I saw the Surgeon a week later, she said they found a “sneaky” cancer.  I was concerned and confused.  What was going on?  Why wasn’t anyone being up front with me?  There is nothing I hate more than someone who doesn’t come to the point, just say what is on your mind, especially my doctors.

Finally at my two week appointment my oncologist tells me it is Inflammatory Breast Cancer.  He gives me some statistics, something about how aggressive it is and that we’ll need to begin chemo soon. I went home and straight to the internet.  Then I became really upset.  I felt like my doctors had completely failed me.  They had done everything wrong.  Why didn’t they know that this cancer was different from my last two cancers?  I told them that this time it was really itchy.  I told them that it looked like my nipple had been swallowed by my lumpectomy scar.  Why didn’t they really look at my breast?  I had asked for chemo before surgery because I had read that some Triple Negative cancers (which I have) respond better to chemo prior to surgery.  Why didn’t they go along with that?  Then I began to feel guilty.  Why hadn’t I taken on a stronger role in my care?  Why didn’t I look up the signs?  Why did I put all my trust in the doctors?  I should have been a better advocate for myself.

Then I had to get to acceptance.  That was the hardest part.  I had to accept that I had IBC that my treatment was not ideal for IBC, but it was what I had.  I had to accept that there was nothing more I could do.  But I couldn’t. I would seek out the expert in IBC to get a 2^nd opinion and if there was something more I could do, more chemo, more radiation, anything, I would do it.  I wanted to do all that I could in the early stages of my disease.  Now that I knew I was going to fight!  I found the expert, Dr. Cristofanilli in Philadelphia and my youngest daughter and I went to see him.  He confirmed that my doctors were negligent in diagnosing IBC.  They should have been able to see symptoms from the MRI – my right breast was twice the size of my left and they could see the tumor had clearly invaded the skin.  He said it is unfortunate but at this time too many doctors and patients are uneducated about IBC.  By the time I saw him, I had been through all my treatments, including 4 months of chemotherapy.  Dr. C (as his patients refer to him) told me we knew IBC was in me, we just had to find out where.  The fact that I was Triple Negative meant that it was highly likely I would have a recurrence.  Not great news, but at last a Doctor who was talking strait to me.  I finally had acceptance.  At this time there was nothing else I could do.  No other treatment.  Just wait.

With acceptance came peace.  I don’t worry about dying near as much, I enjoy living each day.  Yes, I have a new normal.  My body has been forever changed my cancer, chemo has taken a toll on me, but I’m here and I appreciate every new day.  I’m happy, full of joy and love.  I was never alone for any of my chemo treatments, my daughters were with me for all but one.  The one they missed, my Pastor came with me.  The treatments were never depressing they were times of fun and laughter.  My daughters are very well versed in IBC, thankfully I do not carry the breast cancer gene and they are aware of the new guidelines for their own screenings.  I don’t obsess about another recurrence; if it comes back then I’ll deal with it then.  I refuse to live each day in fear.  I have a beautiful granddaughter to spend time with; I’m going to be around for a long time!