Inflammatory Breast Cancer is very rare, and very aggressive. I am alive today because I went to the doctor right away for something that looked like nothing. The doctor who did my ultrasound knew about IBC, so I had a needle biopsy that day and from biopsy to chemotherapy was ten days. It wasn’t a minute too soon.
IBC is survivable, but timely (and that means FAST, folks) diagnosis and treatment is critical. If you or someone you care about has any of the following symptoms, get to your doctor and persist until you know exactly what it is. This information is directly from the IBC research site that I have posted in my links.
One or more of the following are Typical Symptoms of IBC:
- Swelling, usually sudden, sometimes a cup size in a few days
- Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
- Ridges and thickened areas of the skin
- Nipple retraction
- Nipple discharge, may or may not be bloody
- Breast is warm to the touch
- Breast pain (from a constant ache to stabbing pains)
- Change in color and texture of the areola
If you suddenly develop a lump or mass, have it checked immediately. We have one reported case where a 9x8x5cm lump developed in only three weeks.
Use caution when relying on the interpretations and reports of the mammogram or ultrasound! Inflammatory breast cancer usually grows in nests or sheets, rather than as a confined solid tumor. IBC may not be detected using either mammography or ultrasonography. Increased breast density compared to prior mammograms should be considered suspicious. Remember: You don’t have to have a lump to have breast cancer. (end of import from IBC site)
My own experience was that a quarter sized rash became a raging hot red breast with an inverted nipple, all in the two weeks it took to get from GP to ultrasound. When I had my scan it showed a sheet that was 11(!!!#&*) centimeters in diameter. I was lucky. Too many women are still losing the battle with IBC because no one shared this information with them.
Maybe talking about breasts with someone makes you uncomfortable. Sometimes women get uncomfortable when I share this information. Never mind. If she’s the one to five in a hundred breast cancers that is IBC, she will thank both of us for saving her life.
Please tell everyone you know!
People survive this disease more and more because a lot has been learned about it, new drugs are being developed, and the treatment protocol is somewhat different now than for other breast cancers.
Have you or someone you know been diagnosed with Inflammatory Breast Cancer?
Maybe you have been researching, and have found some pretty scary stuff on the internet. Perhaps you are more worried than you were when started looking, because those statistics are pretty alarming, and if you read “rare, aggressive and deadly” one more time you’re going to punch somebody. What good news could there possibly be?
Actually, a lot. Most importantly, that it is survivable, and those dire statistics are anywhere from two to five years old. A lot has changed in the world of IBC, and Planet Cancer in general. Many of the articles you may have seen online were written several years ago. Sometimes the information presented is just plain inaccurate.
Is IBC scary? Yes. It is rare, about one to five out of a hundred breast cancers. It is aggressive, but so are the treatments used to fight it. Deadly? It can be, if it’s not diagnosed properly. There’s no doubt it’s a nasty cancer, and it does kill. And, many times, it does not. I am an Inflammatory Breast Cancer survivor, and I know of several others. There are twenty year plus survivors out there.
When survival rates enter the dialogue, five years is the usual measure. This means that people who were treated even three years ago don’t factor into those figures. When I was treated for IBC in 2007, huge strides had been made in treating my disease within the previous two years.
First, let me clear up some misinformation I’ve found out there. IBC is not always diagnosed at Stage 4. It is never diagnosed at Stage 1 or 2, because the aggressive nature of the beast is that by the time you know it’s there it’s at Stage 3 or more. That may sound scary, and it is. But Stage 3 holds the possibility of emerging on the other side of it cancer free. Stage 4 breast cancer isn’t even what it used to be. People beat that too. Those stories don’t get much press, unfortunately. IBC is not “a new kind of breast cancer” either. It has been around for decades, just missed a lot until some savvy doctors picked it up on the radar.
People survive this disease more and more because a lot has been learned about it, new drugs are being developed, and the treatment protocol is somewhat different now than for other breast cancers. It’s a tough protocol, but I rode that wave and you can too. I’ll address ways to do that in another post soon.
There are long term Stage 4 survivors around as well. I have a friend I met in the “chemo salon” three years ago who had been surviving for two years when I met her. She’s still there, three years later, getting her weekly herceptin (thank you Genentech!) and still having her life.
So, the gloom and doom is old news. The good news is that there are more and better treatments than ever before for facing down Inflammatory Breast Cancer, and we survivors are legion.
Hang in there!
About The LIberation of Persephone/ElizabethElizabeth Danu started this blog to provide a postive and useful resource for people facing cancer and thier loved ones. She is now a ten year survivor of Stage IIIC Inflammatory Breast cancer, enjoying her post-cancer life as a mom, blogger, speaker, wellness consultant and unquenchable optimist. She also sings and performs regularly with her a capella quartet, Curious Blend.
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Disclosure:My intention with this website is to provide an oasis of hope for those facing a fierce diagnosis. Any proceeds from this site go towards building this resource and for breast cancer research, particularly directed towards Deadline 2020 for the end of breast cancer. Blessings, Elizabeth
My bedside companion in 2007
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