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    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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    I posted about an hour ago and the post appears to have been lost.  Yikes, what a lot of bugs!

    I am soliciting comments from folks about what you all would like to see here, in addition to what I plan to place here.  My hope is that many people will find resources for living well on this page, whether or not they are facing cancer.  Living well is a laudable task whether the lesson was learned the hard way or not!

    so….articles, book recommendations,  whatever else I can think of.  It’s all fair game.

    What I am wanting especially is for people who are feeling discouraged to find help and hope.

    Thanks for visiting!

     

    Julia Roberts said that, when she won an award.

    I think that being shamelessly filled with joy is a most honorable pursuit. This is my third attempt (third time is the charm, they say) to continue the blog that I started with Caringbridge. It is time. It has been over three years since I was diagnosed with Inflammatory Breast Cancer. At this time three years ago I was approaching the finish line for Elizabeth’s Ironwoman Marathon.

    Now it’s about Thrive Medicine, for anyone who can use it!

    Cancer is not the only tough as hell journey that folks go through. I have faced others. There are amazing resources available for the pursuit of deep satisfaction, spiritual growth, and putting the life we have to good purpose.

    So, this work begins and will continue to be a work in progress, to be fleshed out over time.

    Stay tuned!

     
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