My story, by Pat

My story

-By Pat, Eastport, Maine, USA

I woke up on the couch one morning in mid April of 2007.  My husband had just had open heart surgery, and still being unable to lie flat, was sleeping next to me in the recliner.

My first thought was that something terrible had happened, but he was sleeping peacefully, the house was quiet...even the cats weren't awake yet.

Then I realized that the problem was with me.  My right breast felt hard, and I could feel the heat of it through my sweatshirt. I quietly got up, closed the door of the bathroom, turned on the lights and was horrified at what I saw.  The breast was bright red and hugely swollen.

In the past decades, I had found two lumps, one in each breast.  Both lumps were benign, and both had been excised. That experience made me a believer, and I religiously did monthly self exams and had annual mammograms.  I knew I hadn't had felt anything different up to now. This MUST be an infection, or maybe I pinched it badly in my sleep on that old couch... but there was this voice inside that said, no - this is bad.

I decided to say nothing for two weeks until my annual physical with my primary care doctor.  Maybe it would resolve itself...maybe not...but it would give my husband a couple more weeks of less stress & more healing.

Meanwhile, I researched the internet, tried my best to run a fever, (this MUST be an infection!), learned everything I could about breast diseases, found the IBC site, looked at pictures, and slowly came to terms with the truth.  I had breast cancer, and it was IBC.

My primary care doc, bless her heart, took one look and did three things: set me up with a diagnostic mammogram at a place where they had the newest digital equipment, made an appointment with a local surgeon who had the first available time slot for a biopsy, and gave me a prescription for antibiotics.  By this time, I could feel a small lump near my nipple, and I was getting shooting pains through both breasts, both armpits and up into my neck.

It took all the courage I had to tell my husband.  He was wonderful...telling me we were just getting all our health issues out of the way this year, and next year will be great.  Thankfully his recovery was going well, and we were back in our own bed!!

They were gentle on the swollen breast, but the mammogram on the unaffected breast hurt so much that I threw up on the technician's shoes. Then it turned out that there was no one on site that could read the results.  I left in tears.

Days later, the local surgeon told me the results of the biopsy.  It was breast cancer, but not IBC, because the skin punch came out fine.  He then proceeded to explain that he had studied under a breast surgeon, and had done three mastectomies himself, and he obviously expected to do mine as soon as possible.  I left his office and called my PCP in a panic.  This was NOT going to go down this way!  She found another surgeon in a large regional hospital, and I waited another week.

The new surgeon biopsied an enlarged lymph node, and set me up with a chest x-ray, a ct scan, a bone scan, and an oncologist...all in 24 hours.  The oncologist had me go for a Muga scan and MRIs on both breasts, and for the first time, I saw my pathology report.  It was invasive ductal carcinoma, tumor grade 3, er-/pr- and her2 positive.  It was in my lymph nodes, and in spite of the negative skin punch biopsy, it was IBC.

It was the end of May. The small lump that I felt at the beginning of the month was now five centimeters in diameter.  I made the eight hour drive to break the news to my 87 year old mother, and to the rest of my family.  On June 1st, I had a port-a-cath implanted, and on June 4th I had my first chemo.

My oncologist had recommended Adriamycin/Cytoxin every two weeks, and I had expected that. Following that, Taxol with Herceptin would be infused once a week for twelve weeks.  Herceptin would continue every three weeks for a year.  Then I would need surgery and radiation.  And that's exactly what happened.

I felt very lucky, even at the beginning.  When my husband got sick, I was unemployed, but decided to buy health insurance on my own - after all, he's just two years older than me - I could get sick, too!  I had a small pension from a job I had years ago, so I applied for that early. It was a greatly reduced amount (I was only fifty-six), but it paid the premiums.  Without that, we would have lost everything to health care costs. I was able to get Social Security disability in five months.

Chemo made me sick, but I felt I had an excellent medical care team: warm, responsive and knowledgeable, and hubby, family and friends were ultra supportive....and hubby COOKS!! 

By October, at the end of chemo, my breast was looking wonderfully normal.  After the mastectomy, my surgeon called to tell me to say that I had had the most miraculous response to neo-adjuvant chemo that she had ever seen. There was just a tiny bit of DCIS left in the affected breast, but nothing else. I cried more that day than I ever did before.

Radiation went fine - no terrible burns - and by the end of that, I was brave enough to expose my newly fuzzed out scalp to the world. I finished Herceptin infusions in July of 2008, and I am now without evidence of disease.

But there were scares!  There was an episode of chest pain that turned out to be costochondritis - after much cardiac testing and scans. I had severe headaches that turned out to be migraines...after yet another scan. 

I've been left with thinner hair, slight lymphedema in my right upper arm, low energy, and painful neuropathy in my feet.  And it seems I have chemo-brain!  Some say that all may improve over time, but I'm loving the time I have right now. We have a new grand child; we have a new (to us) boat, and spend time on the ocean. We're able to travel and enjoy family and friends.  I'm involved in a project to help the elderly stay in their homes longer, and a local committee to find ways of coordinating help for other cancer patients.

And I am so lucky to have access to the internet and the IBC support site.  I can't begin to say how much it helps me cope. All those wonderful people taught me how to survive being an IBC patient.