Education, Advocacy and self-examination

We are taught to look for lumps and that mammograms can be life savers.

Not so with Inflammatory Breast Cancer (IBC), as it is called, when rarely is there a lump even on self exam. IBC cells lay in sheets or nests of cancer; thus, a mammogram will not see anything.

What women, and yes men ‘feel or see’ is a sore and sudden increase in one breast (rare for both but it does happen).  Every person is different and some of the above symptoms will occur.

Itching that feels like it’s coming from the inside, and no amount of creams will stop it; a small rash anywhere on or under the breast; a bug bite look; overnight bruised area in a small area; warmth of one breast almost hot to the touch; pain (too many doctors will tell us there is no pain with breast cancer – not true with IBC).

Patti Bradfield knows too well how IBC presents itself, as she relates her daughter’s journey.

“My 37 year old healthy, athletic daughter was diagnosed with IBC in September of 2003. In just a few months she went from thinking she was very healthy to the reality that IBC had invaded her body.

My daughter besieged me to write about this form of cancer, to get the word out to women and men, about this little talked about breast cancer. Did she have symptoms? Not the type we are all told to watch for. What happened to her is related below in her own words.”

“I had been working out for about 8 months, with a trainer. All the other women in my workout class were getting fit and trim, but I just got heavier and seemed to build muscle in my arms, legs, and breast. In April of 2003 I decided to quit the weights and the workouts and try to shed some of the pounds, which I did quite quickly. I lost 25 to 30 pounds rapidly.

Almost overnight I noticed that the nipple on my right breast seemed slightly inverted and was bigger than my left. Being right handed, I thought it was all the weight lifting and shedding of pounds that caused this oddity.

In May I noticed that the right breast was a little harder than the left, but no lump, no pain, nothing to signal what I had been told all my life to watch out for. It was a gradual thing, this lopsided look that I was seeing in the mirror.
I began the search for a doctor in the small town I had moved to just the year before.

By the time I found one that would take my insurance, it was September and the first day of my vacation. I saw a nurse practitioner who took one look at my enlarged right side and immediately called for a mammogram and ultrasound that same day. I will never forget the woman that took the scans. She flippantly said to the doctor, “Oh, she’s done.”

The very next day I saw a surgeon who did a deep core, needle and skin biopsy. Before he even got the results back, he told me he believed it was cancer. He walked out of the room and started making phone calls, then came back and said I was to see an oncologist the next morning.

The oncologist had seen the biopsy already, and told me I had Inflammatory Breast Cancer. After years in nursing school and pharmacy training, I had never heard of IBC. I learned that day how invasive this rare form of cancer is, and that I was classed as stage four because it had already invaded my lymph nodes under my arm.

I was immediately scheduled the next day for surgery to implant a portable catheter in my left chest wall and told I was going in for a PET scan the next week to see whether the cancer had spread to any other parts of my body. The scan came back positive for right arm lymph nodes and my liver. The chemotherapy that had been scheduled was changed to now attack the liver also. On October 3 I started the first round of massive doses of cancer fighting drugs, six gruelling hours of IV bags dripping into the portable catheter, Herceptin, Taxol, and Carboplatin.”

My daughter was asked by several medical personnel, why in the world did you wait so long?

The why is the reason for this writing. The why is because we are not told about the symptoms of this fast moving form of cancer. Only if you go looking for information about IBC do you find the articles, the symptoms, and the support groups from the many women world wide that found out about IBC the hard way. And there are still many doctors that will treat a patient like my daughter with antibiotics before ever realizing what they have right in front of them.

To the lay person, the word inflammatory just suggests an infection, not a life-threatening cancer. Without the lump we are told to look for, the symptoms don’t make you think of cancer as a likely risk. An inflamed breast suggests to the unaware something as innocuous as an infection in a milk duct.

BE AWARE! Know the symptoms. Ask your doctor, use a search engine, read about it. Know the signs. There is no screening for the most aggressive of all breast cancers. Know your own body, and if a doctor won’t listen to you, find one that will. It’s your life.

My beloved daughter fought for four years, with her chin in the air and always with this motto:  “Cancer is not going to define who I am.”

I lost my sweet daughter on August 29, 2007. Her words have stayed with me, because sadly, even today, they are true, “write about IBC mom, people don’t know it even exists.”

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