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!

4 Responses to “Meet the #LobMob of breast cancer”

  1. pmozen February 19, 2018 at 3:01 pm #

    Nice job! I forgot we were both members of the LOB MOB. I learned a few new things from this. Hope all is well. paula 406.624.6049 * *

    On Sun, Feb 18, 2018 at 4:16 PM, Double Whammied wrote:

    > SingleShot/DoubleWhammied posted: “Finally got a chance to write about > lobular breast cancer, my particular flavor, and profile rock star patient > advocate 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 lymp” >

    • SingleShot/DoubleWhammied February 19, 2018 at 3:11 pm #

      Thanks for the read. Yes, lobular is a sneaky bastard. BUT knowledge is power, right? ; ) Take care, lady!

  2. Suzanne Crawley September 27, 2018 at 3:06 am #

    Any updates or peeps on Her2 Breast Cancer? I was diagnosed May 2017. It been a long year plus. I had infections, 8 surgeries and now wanting for tattoos, around my skin grafted nipples. I had Taxol Chemo for 9 weeks, a year of Herceptin and lots more. Cant get rid of nosebleeds and headaches. My body is broken and Old Arthur Rists is in every part. If anyone can help my case please contact me. God Bless all.


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