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Inflammatory Breast Cancer
Inflammatory breast cancer, known only to 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 knows how to check for breast cancer will tell you, check regularly for lumps. That’s what we’ve been told to do. That, and getting annual mammograms.
But the IBC is with us and has been for some time. It is a rare type of breast cancer, and the need for knowledge about this topic should be widely publicized. Because when a woman, and in some cases men know, when the symptoms rear their ugly head, it’s usually at a very advanced stage.
how do i know I learned the hard way.
My healthy 37 year old athletic daughter was just diagnosed. In a few months she went from knowing that she was very healthy, to the reality that IBC had invaded her body. My daughter has been harassing me to write about this form of cancer. To get the word out to women and men about this unspoken cancer, IBC. Did you have symptoms? He’s not the type we’re all told to watch out for. She related the following to explain what happened in her case.
“I was working out for about 8 months, with a trainer. All the other women in my workout class were getting fit and cutting, but I got heavier and seemed to build muscle on my arms, legs and chest.In April 2003 I decided to stop weights and training and try to lose some pounds, which I did quite quickly.I lost 25-30 pounds quickly.
That’s when I noticed that the nipple on my right breast looked a little inverted and was bigger than my left. Being right handed, I thought it was all the weight lifting and weight loss that caused this weirdness.
In May I noticed that my right breast was a little harder than my left, but no lump, pain, or anything that would signal what I had been told all my life to take into account. It was a gradual thing, this wayward look 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 me on 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 ordered a mammogram and ultrasound that same day. I will never forget the woman who did the scans. She said wryly, Oh, it’s over.
The 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 thought it was cancer. He left the room and started making phone calls, then came back and said he had to see an oncologist the next morning.
The oncologist had already seen the biopsy and told me I had inflammatory breast cancer. After years of nursing school and also pharmacy training, I had never heard of IBC. That day I learned how invasive this rare form of cancer is, which I was classified as stage 4.
I was immediately scheduled the next day for surgery to implant a portable catheter in my left chest wall and was told I was having a PET scan the following week to see if the cancer had spread to other parts of my body. The scan came back positive for lymph nodes in my right arm and my liver. The chemotherapy that had been scheduled was changed to now attack the liver as well. On October 3rd I started the first round of massive doses of cancer drugs, six grueling hours of intravenous bags dripping into the portable catheter, Herceptin, Taxol and Carboplatin.”
To my daughter, the medical staff of many clinical experts said, “Why did you wait so long?” The reason is the reason for this writing. The reason is because we are not told about the symptoms of this fast moving form of cancer. Only if you search for information about IBC will you find the articles, symptoms and support groups of the many women around the world who found out about IBC the hard way. And there are still many doctors who will treat a patient like my daughter with antibiotics before realizing what is in front of them.
The word INFLAMMATORY itself suggests only an infection to the layman. You wonder, if it were me, would I know I might have breast cancer. Before that day in September when my daughter called me, I would have said no, maybe I have a milk duct infection or something. Without any bumps like we’re told to look for, your mind isn’t triggered if you don’t know IBC.
BE CAREFUL! 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 I’ve read until my eyes burn, I’ve found that people with this rare disease offer assistance and emotional support. They have also called for public awareness of this disease to be put on the front page, not at the bottom of a list.
There are a lot of statistics about the prevalence of breast cancer, how to watch for it, how to screen for it, and what gruesome regimen of chemotherapy, mastectomy, and then radiation is clinically necessary. Inflammatory breast cancer has been around for many years, but because of its rarity, it’s not talked about much. BUT IT SHOULD BE.
The age of women who get it varies, but based on the authors’ research, it seems to happen to women and some men in their prime. Treated as the name implies inflammation, many doctors are in the dark when the mammogram comes back clear, and even in some incidences, a biopsy can come back normal. On the other hand, the patient knows that something is not right, and in many cases she only depends on her doctor for guidance. But there it is hiding in the system, caused by an unknown cause. Researchers say it is not hereditary.
There was a case in Castro Valley, California where 3 women were diagnosed with IBC and they all worked at the same place. The doctor who treated these women has appealed for funding to find the cause of this particular incident, because they all worked in a laboratory and were about the same age. But because IBCs are so rare, funding didn’t come quickly enough.
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#Inflammatory #Breast #Cancer