Well, that was disconcerting...

I just finished watching an episode of Mystery Diagnosis. Not my usual TV fare but this one was about Inflammatory Breast Cancer, or as they called it: "The Breasts That Changed Color."

The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds... so far.

I've never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!

Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.

Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.

My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn't have IBC because there was no clinical proof. Like I can just decide that something is or isn't so and have the world fall into line. It's laughable, really. Or maybe just naive.

Amanda Nixon's doctor had no idea that the eggplant colored breast he was looking at was IBC. Don't they have a checklist or something???? I mean, really. Anyone with internet access can Google "breast discoloration" and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!

My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.

WHY isn't every woman diagnosed with Breast Cancer referred to an oncologist - even if it's just for an evaluation?

WHY isn't there an intake "symptom checklist" for Breast Cancer patients that can be fed into a database or something?

WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!

And why are some of us blessed enough to be here three, four, even ten years later when others don't last out the year?

Cross posted to Mothers With Cancer