rare form of breast cancer

[deepdiver]

You might wonder why you need to be concerned about a rare form of breast cancer called inflammatory breast cancer (IBC). After all, IBC accounts for less than three percent of all breast cancers.

I'll give you three reasons for concern:

   1. The 5-year survival rate of all breast cancers is nearly 90 percent, but the 5-year survival rate for IBC patients is FAR lower – only 40 percent
   2. In the early stages, IBC is much less likely to be accurately diagnosed compared to other forms of breast cancer
   3. Awareness of the early symptoms is the key to survival

So if you know the symptoms of IBC, and you tell your daughter, and she tells her friends, and her friends tell their mothers, and their mothers tell their sisters, and their sisters tell their aunts and uncles and fathers and cousins and grandparents…if that chain is set into motion by every one of us, lives will be saved.

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Not quite what you expected
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Say you're in the shower and you feel a swollen spot near the skin's surface on one of your breasts. When you dry off you notice the spot is red, tender and warm to the touch.

Would you think breast cancer?

Probably not. In fact, most doctors don't think breast cancer either, so these typical IBC symptoms are often diagnosed as a simple infection and treated with antibiotics.

The swelling and redness is caused by blocked lymph vessels in the skin. And that's very bad news. As Dr. Barbara Smith of Massachusetts General Hospital told the Boston Globe, the lymphatic vessels are "the highways out of the breast to the rest of the body." And that's one of the key factors that makes this cancer very dangerous: It spreads so quickly that by the time it's diagnosed it's usually metastasized.

Here's what else we know about IBC:

    * Most IBC patients don't feel a lump – the breast cancer symptom they search for in self-exams
    * Mammograms don't detect IBC
    * Statistics show that women under the age of 50 and black women appear to be at highest risk
    * Most cases of IBC are diagnosed at stage III (locally advanced) and stage IV (advanced to other organs)

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Glimmer of good news
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There's no way around it – IBC treatment must be aggressive and usually involves chemotherapy, followed by surgery and radiation.

That's the bad news. And frankly, there is precious little good news.

I found one study that showed how whole-body FDG-PET/CT exams were able to accurately detect just how much the disease had spread. But FDG-PET/CT scans are costly and put a patient at greater danger. PET scans use "labeling agents" that are radioactive.

"Adding a CT scan is insult to injury – a whole-body CT, I'm told, is equal to something like 350 standard chest film x-rays...that's a LOT of radiation (plus the PET scan radioactivity). Seems to me the best shot, if you're going conventional at all, is assume metastases are already there and treat accordingly, saving the huge cost and considerable radiation insult."

the one glimmer of good news in the treatment of this disease: l-glutamine.

L-glutamine is a key amino acid that's essential to immune function. According to a study conducted in the late 90s, when l-glutamine is given with chemotherapy, such as methotrexate, the amino acid significantly reduces chemo toxicity.

That's it. That's the end of the good news. After adding l-glutamine to chemotherapy, there's only one way to bring better news to the IBC story: Get the word out. Please forward this e-Alert to every woman you know so future IBC patients might have a better chance of catching this disease when it's most treatable.
DR.S.

[deepdiver]

Kat, Hello! I hope you make it to 100 years!!
I haven't seen you on another forum!

[katarina777]

Well hi, dd. It's a small world, isn't it. And it get's even smaller speaking of IBC. I had it in 2007. As you say, chemo first, then surgery, then radiation, then hormonal treatment if applicable. Stage 3B automatically, if the news are good. I had 3C. I first thought I had fibrocystic breasts, and that didn't worry me, except it was only in one breast, which I thought was unusual. and then, it seemed like within a week, there was a tumor the size of a large baked potatoe present. I saw a doctor and told him I had bc. he didn't argue with me. When I saw the breast surgeon, he told me he was 99% sure it was IBC even before he did the biopsy, and he called the oncologist on that first visit to make the appointment. (he told me we could always cancel it if the biopsy results told otherwise) but they didn't.
I always knew I would never get cancer, because I have so many other health problems, and nobody had ever had it in my family. But there was no way of missing this one. The affected breast was actually a lot smaller than the healthy one and I think this is important to mention, as usually the information tells that the diseased breast gets bigger.
so it's been a year since I finished the big 3 treatments, and who knows. i think I was and am in good hands. i actually had a MRI of my abdomen last week because there are lesions in my liver but I don't think they are cancer. i got the report yesterday but unfortunately it was someone else's report, and they mixed up our reports. All I know is that Vicky will live. Anyway, thanks DD for posting. i think I completely forgot to tell you? Kat

[zouzi]

I just want to thank you for the information about IBC .It is very well explained and I hope that many women including myself will be checking about the symptoms you describe.Thanks again for the time it took you to write this long information.God bless.