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Meet the #LobMob of breast cancer

18 Feb
lobular breast cancer patients

Illustration by Kimberly Carney / Fred Hutch News Service

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 our 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). Because, you know, cancer patients know how to party.

After she recovered from treatment (and took a moment to breathe), Leigh sort of leaned into cancer research, as many of us do. She realized quickly that invasive lobular is lumped in (no pun intended) with invasive ductal and treated identically — mainly because lobular is almost always estrogen receptor positive (ER+ in cancerspeak).

But lobular is a different animal entirely, down to its tiny biological bits. And it’s a hard one to catch early, because it doesn’t image as well as ductal. Particularly if you have dense breasts — that’s where that whole “doublewhammied” thing came from. That and the fact I had two tumors in both breasts. Another weird lobular trait: many women have tumors in both breasts and/or have more than one tumor per breast.

There are other differences. Lobular spreads to oddball places like the GI tract when it metastasizes. The cells travel single file, kind of like deadly little tree branches. This weird growth pattern means it doesn’t always make a lump (mine was a “tuck” that pulled from inside and crumpled in when I raised my left arm).

But again, the cancer has been cast as “just like ductal” for a long time. So not everybody knows these quirky differences. Not even patients or PCPs or sometimes not even oncologists. Women come in with weird abdominal symptoms and they’re told they have irritable bowel syndrome (because hey, don’t ALL women have IBS?). But no, they have stage 4 lobular cancer.

leigh pate - lob mob

Leigh Pate, lobular breast cancer patient/advocate. Photo by Robert Hood / Fred Hutch News Service

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. The timing is perfect because there are some cool new  lobular studies being done right now (at Fred Hutch and elsewhere) and we can all help get the word out.

You can read my full story here, which includes some intriguing history regarding combined hormone therapy (HRT increases the risk of lobular, not ductal — I did not know this!). You can also see where scientists are looking, genetically, hormonally and otherwise, in order to shut this shitshow down.

As always, thanks for the read. Enjoy your day, peeps!


Get your geek on – and connect with cancer peeps – at the NW MBC conference

10 Sep

lady scientistBig doins in the world of mets these days. And by mets, I mean metastatic breast cancer, not the baseball team. 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.

This party is being thrown with help from Komen Puget Sound and lots of other orgs. 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. And this thing is going to be the bomb.

Is it weird to be geeking out over a cancer conference? Yes, absolutely. But that’s how it is these days. I’ve gotten sciency, people, which is a pretty strange turn of events considering the bad taste for science my condescending 7th grade teacher Mr. Sargo left in my mouth.

Hmmm … is it too late to switch majors? Does this lab coat make my butt look big? ; )

This is the second annual NW MBC conference and it looks to be even bigger, better and more bad ass than last year’s inaugural event. The force behind it? 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.

And then there are the researchers. 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.  And lots, lots more.

Topics include integrative oncology; inflammation; health disparities; financial toxicity; clinical trials; vaccines; and research, research and more research. There’s even going to a special session on filling in the mets recurrence data that’s currently missing from the SEER Cancer Registry (more on that here).

Breakout sessions will cover mets sites (liver, lung, brain, etc.) and cancer types (triple negative, HER2, etc.). There’s even going to be a session on lobular breast cancer (my particular flavor) with experts from the University of Pittsburgh.

As I always like to say, knowledge is power. Even more powerful? Free knowledge that might save your life — or the life of a friend! And this conference is free, folks. Here’s the full agenda.

Just so you can see what you’re getting into, here’s a link to a piece I wrote last year that talks a bit about the first conference. I’ll be covering it again this year. If you can make it, please come by and say hello (I’ll be the frazzled blonde furiously live tweeting and scribbling notes in a reporter’s notebook).

If you can’t make it, the word on the street is, it will be livestreamed. Check the Komen Puget Sound website and/or FB page for more details on that.

Peace out, peeps. I’m going to go measure my P-values.