My life and the life of my family changed in 2007, when we learned I had Inflammatory Breast Cancer. I was 38 years old and my nurse had never heard of it.

The surgeon I saw in rural Nebraska said he had seen four cases in his lifetime of practice. He assured me I didn’t want it and didn’t have it, but I did.

He didn’t mean to mislead me. I sat there trying to wrap my mind around how I had all the symptoms I had seen online. Realizing how alone I felt when I was telling the medical professional what he was saying didn’t add up. I hoped he was right and I was wrong but it was my life that was at stake.

I had Googled benign red spots on breast, I saw terrible photos with a grim prognosis. I found one line that gave me hope: outcomes were improving, statistics had not had time to catch up. I held onto that as I began treatment for a disease that only had one or two paragraphs in all the breast cancer books. I remember throwing a bunch of literature away because it didn’t apply to the type of breast cancer I had.

People would say, oh, so many women get breast cancer you don’t need to worry. They had no idea the severity of the card I had been dealt. How could they? Many doctors and nurses were unfamiliar outside the oncology departments. They didn’t know that remission isn’t really a status with IBC. Most doctors use NED, no evidence of disease due to the recurrence rates. They didn’t know that it is often misdiagnosed to the detriment of the patient.

Someone even said well at least you get a boob job out of it. No actually I didn’t. They didn’t know that best practice with IBC means reconstruction is not advised in the first five years. They also didn’t know that most reconstructed breasts don’t have feeling. That is something researchers are working on today.

Today, eighteen years later, thanks to many dedicated individuals, there has been progress. Progress in research, in public education. But the front-line doctors and nurses still need to recognize IBC early on. They need to know how to screen women who present with unusual symptoms. When nothing shows on a mammogram, but clearly something is wrong.

The announcement of a medical code for IBC should be celebrated.

It gives us a stronger point to advocate from. We are no longer invisible, something of a myth.

A friend of mine went to the doctor with similar symptoms. He told her she had a better chance of getting hit in the head with a meteor than of having IBC. Doc….really? But this is not the only time something like this has happened.

I remember asking her if I should go stick my then bald head in his office. And tell him this is what it looks like when you get hit in the head with a meteor.

As a result of that encounter, I wrote a grant. We had a dinner for doctors. We flew a medical professional to our hospital from MD Anderson to speak on IBC. I hope he understood it better then.

The code is a wonderful tool to track those who are being diagnosed. To show the need for more research dollars. To help with accurate treatments.

I am thankful for every day I have to breathe and speak and write. The code gives me some validity but it doesn’t change the work. It will help move IBC out of the shadows in the medical community over time. Hope is eternal and I will hope always for the day that everyone knows and there is awareness for all.