November 3, 2003
Inflammatory Breast Cancer
Inflammatory breast cancer, known only by some doctors and men and women who have been diagnosed with this rare form of cancer, are aware of its existence.
As any woman who is knowledgeable about how to check for breast cancer will tell you, they check regularly for lumps. That is what we have been told to do. That, and getting annual mammogram scans.
But IBC is amongst us, and has been for quite awhile. It is a rare type of breast cancer, and the need for knowledge on this issue should be highly publicized. Because by the time a woman, and in some cases men know, when the symptoms rear their ugly head, it is usually in a very advanced stage.
How do I know? I learned the hard way.
My 37 year old healthy athletic daughter has just been diagnosed. In just a few months she went from knowing she was very healthy, to the reality that IBC had invaded her body. My daughter has besieged me to write about this form of cancer. To get the word out to women and men about this untalked about cancer, IBC. Did she have symptoms? Not the type we are all told to watch for. She has related the below to explain what happened in her case.
"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.
That's when I noticed that the nipple on my right breast seemed slightly inverted and it was bigger than my left. Being right handed, I thought it was from 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, Oh, she's done.
The very next day I saw a surgeon who did a deep core biopsy, a needle biopsy and a 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 also pharmacy training, I had never heard of IBC. I learned that day how invasive this rare form of cancer is, that I was 'classed at stage 4.
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 if 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 3rd I started the first round of massive doses of cancer fighting drugs, six grueling hours of IV bags dripping into the portable catheter, Herceptin, Taxol, and Carboplatin."
My daughter was told by the many clinical savvy 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.
The word INFLAMMATORY in itself suggests just an infection for the lay person.You ask yourself, if this was me, would I know that I could have breast cancer. Before that day in September when my daughter called me, I would have said no, maybe I have an infection in a milk duct or some other thing. With no lump as we are told to look for, your mind doesn't really kick in if you're unaware of IBC.
BE AWARE! Not just in October when it's Breast Cancer Awareness Month, but all the time. Ask your Doctor, put it in a search engine, read about it. Know what the signs are.
From the articles and research papers which I have read till my eyes burn, I have found people with this rare disease offer assistance and emotional support. They also have urged that the public awareness of this disease needs to be put on the front page, not at the bottom of a list.
There are many statistics of the prevalence of breast cancer, how to watch for it, how to check for it and what the gruesome regimen of chemotherapy, removal of the breast, then radiation are clinically required. Inflammatory Breast Cancer actually has been around for many years, but because of it's rareness, it isn't talked about that much. BUT IT SHOULD BE.
Age of women who get it vary, but from this writers research it seems that this occurs to women and some men in their early productive years. Treated just as the name implies An Inflammation, many doctors are in the dark when the mammogram comes back clear, and even in some incidences, a biopsy can come back normal. The patient on the other hand knows something isn't right, and in many cases only relies on her Doctor for guidance. But there it lurks in the system, triggered by an unknown cause. Researchers say it isn't hereditary.
There was one case in Castro Valley California, where 3 women were diagnosed with IBC and they all worked in the same place. The Doctor who treated these women has cried out for funding to find the cause in this particularly incident, because they all worked in a lab and were all close to the same age. But, because IBC is so rare, funding did not come quick enough.
For more info
Inflammatory Breast Cancer (rapidly progressing breast cancer: RPBC)