Tag Archives: Breast cancer

I’m having a moment

21 Apr

TalkIBC momentDiscovered a new Twitter tool that I’m geeking out about a little. It’s called ‘Moments’ and it lets you string a bunch of tweets together — yours and others’ — to create a short story.  It’s a bit like Storify, which recently lost its battle with cancer … er … capitalism. RIP, brave fighter! ; )

Anyway, I’ve put a couple of cancer advocacy Moments together and am going to attempt to share them here. The first is from Lung Force Day at the University of Washington back in March, a very informative sweep of the latest in lung cancer screening stats; smoking cessation apps; electronic vaping and Diane Maping (sorry, couldn’t resist). ; )

It was also a lovely opportunity to see the UW’s glorious cherry blossoms and hobnob with the area’s lung cancer oncs, surgeons, radiologists, researchers and (maybe) one patient advocate? Let’s fix that.

cherry blossoms

Big shout out to Fred Hutch’s Jonathan Bricker and SCCA’s Donna Manders, who are both doing amazing work to help cancer patients get through treatment; kick their smoking habit and sidestep the creepy lung cancer shame and blame game. Remember, if you have lungs, you can get lung cancer. And even if people smoke, they don’t “deserve” to get fricking cancer. Nicotine is super addictive.

Ditto for a lot of the other things we do that give us this craptastic cluster of diseases: drinking too much alcohol; suntanning; sitting on the couch watching TV and eating crap food all the time instead of exercising.

Just sayin’.

lung force day snipHere’s my Lung Force Moment. Please excuse the typos, blurry slides and lack of chronology. You can reorder your tweets but I’m too damn lazy — the sun’s shining and it’s time for Miss Public Health Sciences to go practice what she preaches. ; )

Hope the information is helpful!

My second Twitter Moment is from the Inflammatory Breast Cancer talk that Houston area patient advocate Terry Arnold — aka @TalkIBC — gave in Seattle at the swanky, restyled Cancer Pathways (formerly Gilda’s Club) on Capitol Hill. Terry is an IBC patient who went through seven kinds of hell trying to get a doctor to correctly diagnose her big red swollen feverish boob back in 2007.

Seriously, health care? What a shitshow.

Terry shared her diagnosis story and her path to advocacy (so far, her nonprofit IBCNetwork Foundation has raised $1M for IBC research) and some incredibly infuriating (and darkly hilarious) stories and slides of stupid things her five doctors told her before MD Anderson took one look at her and figured it out (FYI, they actually have an IBC clinic). None of the other docs would believe it was cancer. One guy told her her boobs were aging at a different rate, FFS.

After giving a Patient Perspective talk to 30 or so young docs at Seattle Cancer Care Alliance, Terry brought it (and how!) to the breast cancer patient community, along with Drs. Julie Gralow (onc), Sara Javid (surgeon) and Diana Lam (rad onc).

The breakdown: IBC comes on fast and aggressive; presents as a red, swollen, feverish breast, sometimes with orange peel skin; is often misdiagnosed / mistaken for mastitis and thus diagnosed later; and it’s more prevalent in young women and African-Americans. It’s a tricky one, a rare one (but data is incomplete so it may be more prevalent than we think) and it’s absolutely treatable. One day, hopefully very soon, it will be beatable.

Here’s my TalkIBC Moment along with heartfelt thanks to all the patients and docs and researchers working to take this mofo down. Please share with your networks so more women — and more importantly more doctors! — learn about this creepy breast cancer subtype.

As always, thanks for the read. Cheers and enjoy the day.

Terry and her crazy diagnoses

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