Open letter to all who have, had or knows someone with Inflammatory breast cancer.

apples to apples
Small vent warning, possible trigger alert…sorry, not sorry. for sharing a post I shared in the IBC support group that I run.

I saw a comment tonight and it just haunts me. “why wasn’t I told this….” Because it has been a running verse in my subconscious for over 11 yrs now. Why I started this group. Why I have done so many things surrounding IBC. So, first, if you were not given proper care…IT IS NOT YOUR FAULT. Your doctors are supposed to know, the hospital is supposed to have safe guards for standard of care for IBC but… the reality is this is a rare disease and rare diseases (and the people diagnosed with them) tend to fall thru the cracks. And sadly, this disease is brutal at best. So learn, and when you read, be sure it is about IBC. IBC is different and so is just about everything else involving care.

How can you learn when, so little is published? What about the fact that you might not be a scientist or have time to read if you are? Maybe some days you just want to be a person and not a patient/researcher/self-advocate/just tryingtobreathethatday? Or just be you? I know it is hard. This group is great, but I can see some don’t get here until after dx or some missteps, some get here day of dx and don’t have time/interest/whatever to read and learn. It is hard to remember that almost every single thing you read about breast cancer does NOT apply to IBC. So much of it does not apply to us. For example, the common risk factor for lymphedema in general form of breast cancer is quoted at “Less than 20 percent develop LE and if they develop it is in the 1st three years” So first off, for IBC the numbers are much much higher, we are only really starting to look at this seriously but I know researchers at MDA are saying maybe 60 +% ……. and the year out timeline? It does not apply to us. So that is to give a simple example.

IBC is complex and has subtypes that make changes too. So, to get back to the beginning thoughts, “no one told me”, please learn. As you can. As you can, encourage others to learn. Ask questions. ASK, “does this (whatever it is) apply to inflammatory breast cancer?” That simple question alone can cover some serious ground. Also, since almost anything written for breast cancer does not include IBC, I have some suggestions. Download the app free on iTunes or Google Play. Search IBC Network. It is free. Can’t download an app? It is all on line for people who can’t download. This just a few things to get you started. I can share more. There are patient conferences that are IBC specific for patients held at Dana Farber, Duke, and MD Anderson annually (and are free) to help educate. Also don’t forget the first ever CME written for IBC is available for free at IBC is rare and not taught in medical school or conferences. So this is very groundbreaking and important.

I know our time of a “rare disease, so we don’t talk about it” is changing in the medical world but in the meanwhile, we can do what we can by learning, to help save us and the others to follow. I know it can be better, why I am devoting my life to this cause.

Hope always but also hope based on education is good too! Love you all.

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