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  • 2010 October 26
    From the daily archives: Tuesday, October 26, 2010

    I just posted a blog about Inflammatory Breast Cancer.  Why?

    It’s a rare cancer, so it may not be relevant to a lot of people.  But for those who want to know, it is more than relevant, it is extremely important and unbelievably scary.  Why?

    Stinkin’ statistics!

    When you or someone you love is diagnosed with cancer, it is tempting to look for hope in statistics.  The problem with that is that many statistics are irrelevant by the time they’re published.  Sometimes you’ll find different statistics in different places.  If the statistics are on your side, maybe it helps to look at them and maybe not.

    When I was waiting for my cancer diagnosis, my mom was going crazy on the internet, looking up all kinds of breast cancer and trying to second-guess her fear.  What I had sounded alarmingly like IBC.  She told me she said to herself, “oh please God, not that one!”  Everything she read about it sounded terrifying, the statistics not the least.  She didn’t tell me any of it.  When Dr. Brown gave me the diagnosis of Stage Three Inflammatory Breast Cancer, her tone of voice and facial expression told me it was breast cancer, period.  She told me that I had an aggressive cancer and that we would treat it aggressively, and she was optimistic because she was confident that I could handle the treatments.

    I responded to her optimism with my own.  I was very blessed to have her and the other amazing docs on my team taking care of me.  I didn’t know that I had the bogeyman of breast cancers until later, after  my “phenomenal” response to chemotherapy.

    So, if you or anyone you know is facing cancer, forget about statistics if they aren’t great.  If they are, so much the better.  Each of us gets to choose where to direct our energy, and for me the pursuit of my own happiness and well being was the most important task on earth in 2007.

    I still try to remember that. When Mama’s happy, everybody is happy!

    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!

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