In response to videos implying women delay going to the doctor with symptoms of inflammatory breast cancer, I have been asked to write a clarification of the differences between what many would call 'regular' breast cancer and IBC.
Dr. Massimo Cristofanilli, an advocate of inflammatory breast cancer, opened the first IBC clinic at M.D. Anderson Cancer Center in Houston Texas, October 21, 2006. His vision and goal of gathering physicians, scientists and advocates to form a Global IBC group came to life on December 5, 2008 with the first International IBC Conference. Held in Houston, TX people came from all over the world. The Morgan Welch Inflammatory Breast Cancer Research Program and Clinic now house a large data base from which needed research can be accessed.
"There is quite a bit of confusion in the way advanced breast cancer (including IBC) is described. Locally advanced breast cancer (LABC) is a general term for a large breast tumor with involved lymph nodes (essentially stage III)," said Dr. Cristofanilli.
The typical case of non-IBC will develop from a few cells forming a nodule that grows over time, sometimes involving all the breast and possibly reaching the skin. This process takes months, sometimes years. Usually the tumor is palpable from the initial presentation.
IBC is totally different. The breast can grow and become red and swollen in a matter of days or just a few weeks without palpable mass.
The only similarity between "regular breast cancer" and IBC, is the use of selected treatments based on the characteristics of (REGULAR) breast cancer cells (e.g. HER-2 with Herceptin)."
As president of the Inflammatory Breast Cancer Foundation, I speak almost daily to women from all over the United States, and sometimes from around the world. They come seeking help because they have been diligent with their bodies and know what they are experiencing is not normal.
Overnight swelling of one breast and pain can be sole indicators of a problem. Mammograms "rarely pick up IBC", thus delaying a life saving diagnosis. "Women (often) wait too long to see a breast specialist" and waiting and searching for a knowledgeable physician can be the difference between an early (stage 3B) diagnosis or stage 4 diagnosis.
I learned the hard way.
In September 2003, my 37-year-old healthy, athletic daughter, Tina, was diagnosed and in just a few months she went from knowing she was eating right and exercising, to the reality that IBC had invaded her body.
Tina beseeched me to write about IBC and spread the word to women and men about this underrated cancer.
"I had been working out for about 8 months with a trainer. All the other women in my workout class were getting fit and it seemed I was building 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," Tina recalled.
"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," Tina said.
"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, Tina said." "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," Tina explained.
"After years in nursing school and pharmacy training, I had never heard of IBC. I learned how invasive this rare form of cancer is, and that I was 'classed at stage IV because it was already in my liver."
"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," Tina said.
"On October 3, 2003, 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 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 women are not told about 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 women around the world who found out about IBC the hard way.
The word INFLAMMATORY merely suggests an infection; 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, and suspected an infection. Unless you're aware of IBC, you don't think of cancer unless your breast contains a clear lump.
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. And if what is happening is not normal for you, DEMAND that IBC be ruled out by a biopsy of the affected area. Require an MRI and a PET scan to make sure no major bodily organs have metastatic areas which have been invaded from a possible breast carcinoma.
For more information and up to date research and news about Inflammatory Breast Cancer, you can visit www.eraseibc.com, where IBC specialists make up our Medical Advisory Board. You will find links to the National Cancer Institute from our website.
ED Note: Patti Bradfields daughter passed away on August 29, 2007, almost 4 years to the date from her diagnosis of IBC which had metastisized from the breast to the liver/lungs and brain. She continues her mission to educate as many as possible and especially the medical community to this under reported and misdiagnosed disease.