Double Whammied

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 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). 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. 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.

Thanks to lobular buddy Leigh Pate’s efforts (and that of all the Lob Mob), this great new site offers resources and links and new clinical trials and much more information than I can fit into this “short-and-sweet” blog posts. If you’re interested, there’s also info there on how you can join the Metastatic Breast Cancer Project and/or attend a lobular cancer research conference back in Boston this summer. The bipartisan LTA, sponsored by Washington’s Rep. Dave Reichert; Senator Maria Cantwell (also of Washington), Senator Chuck Grassley, from Iowa, and many more, will do the following: The Lymphedema Treatment Act (LTA) will improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies. Was great to connect with some sisters to the south and hear about all the great health equity work that Komen Oregon is doing for people of color, for rural cancer patients and all the others who keep falling between the health care cracks.

Finally got a chance to write about lobular breast cancer, my particular flavor, and profile rock star patient advocate (and friend) Leigh Pate. Leigh was diagnosed about the same time as me; she’s also a lobular gal and has already done a bit of advocacy around lymphedema, that really annoying swollen arm thing that breast cancer patients get when surgeons take out some or all of your lymph nodes. Leigh and I met first over the Interwebs and later over cocktails at The Triple Door in downtown Seattle where we talked about lymphedema (or milk arm, as it used to be known). Anyway, tired of the status quo and encouraged by an uptick in scientific interest, Leigh and a bunch of her BC buddies (the #lobmob), put together the Lobular Breast Cancer Alliance to raise its profile — and eventually, they hope, funds for more research.

And by big doins, I mean the upcoming Northwest Metastatic Breast Cancer conference, which is happening Friday and Saturday, September 22 and 23, in Seattle. And it’s being held at Amazon Web Services which (for out-of-towners) is in South Lake Union not far from Fred Hutch, the cancer research cancer where I’ve been working these past (nearly) four years. Dynamic duo Beth Caldwell and Lynda Weatherby, two MBC patient advocates who’ve somehow managed to corral cancer peeps from nearly every MBC advocacy organization in the country to speak at the conference. There will be a handful of scientists from Fred Hutch; a few folks from Virginia Mason and Swedish, including the onc who treated me (sounds like a movie title, doesn’t it? ); people from the Broad Institute/Harvard, birthplace of the Metastatic Breast Cancer Project.