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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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Your spring breast cancer advocacy roundup from Seattle

1 Apr

spring flowersIt’s been a busy few months in Cancer Advocacy Land and it’s going to get even busier as we head full on into spring. I’ll be lending my patient voice to a couple of Seattle conferences on cancer care cost, health equity/health disparities and policy in late April and early May. And my BC buddy Terry Arnold of the IBC Network is coming up from Texas to talk about inflammatory breast cancer at Cancer Pathways (formerly Gilda’s Club, Seattle) on April 19. As an oddball BC patient myself (diagnosed with ILC), I look forward to learning more about this subtype.

Speaking of BC subtypes, make sure you check out the great new lobular breast cancer website (here’s my Fred Hutch story on ILC). Invasive lobular carcinoma (ILC) is the weird one where your cancer cells don’t have enough ‘glue’ to stick together so instead of a lump, they march through your tissues like creepy little ants. The upshot, lobular cells and ‘tumors’ grow more like a mesh or tree branch, which means in addition to not always making the standard lump, bump or “hard pea,” they’re hard to image. Mammograms can miss them; PET and CTs can miss them. Still a little unsure about MRI’s efficacy with ILC but would love to hear from radiologists/patient advocates on that point. ILC also pops up in some odd places when it metastasizes: your GI tract, your ovaries, the linings around your organs, even your eyeball area. It’s a freak.

But knowledge is power, right? 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. Please go here: Lobular Breast Cancer Alliance, read up on the cancer, its metastatic spread pattern and how it differs from other ER+ BCs, and make sure your oncologist knows that you’re a special unicorn and needed to be treated as such. 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.

Good stuff is also happening with the Lymphedema Treatment Act, an “active bill” in the current Congress designed to help cancer patients who develop lymphedema after some or all of their lymph nodes are removed during cancer surgery. Breast Cancer patients are particularly vulnerable to this: full axillary lymph node dissection was standard of care for decades. In recent years, research has advised against this (thanks for your part in this, Gary Lyman!), so moving forward, breast cancer surgeons shouldn’t be harvesting healthy lymph nodes like ripe raspberries come summer.

This lymphedema legislation – which could still use your support! – will serve patients who’ve had their nodes taken and gone on to suffer swelling, pain, infection and other complications because their insurance wouldn’t pay for a compression sleeve and they couldn’t afford it to by it on their own. 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. Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow. 

Read more about the specific goals of the LTA here. Read my story on this common cancer surgery side effect here.

Science / advocacy quick hits: Went to the two-day Life Sciences Innovation Northwest Conference this last March 27-28 and heard about a bunch of cool new biotech startups, including one from Fred Hutch researcher VK Gadi (and others) that definitely warrants follow-up. SEngine Precision Medicine takes cancer cells from patients’ tumors or cancery fluid (think ascites), grows tiny little organoids with them, then tests out dozens (100s?) of drugs to see if any of them work. If they don’t work on the organoid and its particular mutations, then they don’t bother giving them to the patient and putting ‘em through all that rigmarole for nothing. If it does work on the organoid, then beautiful things begin to happen. I realize I’m being a bit of a breathless fan girl here but it’s a new and very targeted approach and I have a couple of (hundred) friends who could use a miracle. I’ll keep you posted. slide one - doublewhammiedAlso went to Portland mid-March for Komen Oregon and SW Washington’s Breast Cancer Issues conference. 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. Was very honored that they asked me to share my story as the conference final speaker. Here’s a link to my talk (yes, I’m a hambone). Just doing what I can, while I can, to bring the information to the people. And kick cancer’s sorry ass, one bad joke at a time.

Thanks for the read, people. Happy Easter, April Fool’s (I blogged!) and love to you all.

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.

What if people treated other cancers like they do breast cancer?

15 Sep

I’ve been recuperating at home the last week or so, healing up after my fourth and FINAL breast reconstruction surgery (just need to “dot the i’s” and I’m done, folks – high five!). Anyway, like any good invalid, I’ve spent most of my time watching Netflix, devouring books and reading social media posts from friends, colleagues and fellow cancer buddies.

I especially liked But Doctor I Hate Pink’s recent call-to-arms, Pinktober, Metastasized, a series of blog posts that takes on a few of the more inane “awareness” campaigns that have popped up so far.

As most women with breast cancer can tell you, the month of October is a huge pink clusterfuck. There are your Boob-A-Thons, your giant bouncing boob races, your Save The Ta-Ta’s wet T-shirt contests (because women who’ve been forced to have mastectomies love nothing more than having healthy normal breasts shoved in their faces). Stores sell everything from pink clogs to pink stun guns with a fraction of the profits going towards yet more “awareness” as opposed to research which could, hello, save women’s LIVES not just their boobs. Even the NFL, which has so clearly demonstrated its love of women in recent days, gets into the act with pink cleats and pom-poms. As I mentioned, a clusterfuck.

Follow the bouncing boob. More importantly, follow the money.

Follow the bouncing boob. More importantly, follow the money.

Particularly annoying are the wrong-headed campaigns encouraging women, including survivors and metavivors (women with metastasized breast cancer who are not exactly “surviving” this crap) to post cryptic and vaguely sexual status updates on Facebook (“I like it on the floor!”), don T-shirts adorned with vapid boob-related slogans or bedazzle their bras (provided they still have them) with lace and sequins, again all in the name of breast cancer awareness.

But Doctor I Hate Pink does a great job of taking on these egregious offenders in her posts (she’s also started a cool new #mycancerisnot4sale social media campaign to fight the pink profiteering). “After five years of being truly, horribly sick, I can tell you that [breast cancer] is not a cute, fun little disease that you can play with or have a party about,” she writes. “Breast Cancer is the most trivialized disease in history … Do they have a tighty whitey decorating party for anal cancer?  Let’s put a little brown glitter around the back end of the underwear, hey? Maybe some red sequins to show one of the signs that cancer lurks in that area? Yeah, let’s tell that cancer story through decoration.”

I love her feistiness and her humor and I especially love her point. You really don’t see other cancers – lung, liver, colon, bladder, prostate, anal, cervical, ovarian, etc. – being trivialized and/or sexualized in the same way that breast cancer has been over the last decade or so (although there is a rather interesting “put your cock in a sock” testicular cancer campaign currently rampaging through the interwebs).

What would it be like if other cancers were treated in the same ridiculous and demeaning fashion that some of these PR geniuses and clueless clods treat breast cancer? Read on to find out (with sincere apologies for those going through colon and testicular cancer). My edits are in italics. The rest is verbatim. As always, looking forward to your thoughts.

NATIONAL BRA (Breast Reconstruction Awareness) DAY promotion letter 

Testicles are so much more than just “the boys” or “gonads.” They’re fabulous. They make us feel sexy, whether we’re in our best outfit, lounging around in our favorite flannel PJs, or just bare butt naked (sic). This fall, we want to spread this sensation of beauty and testicle empowerment to testicular cancer patients and survivors, as well as men nationwide.

Many men who undergo orchidectomy aren’t adequately informed about reconstruction options and reimbursement.  In order to help raise awareness of these available options, we’re celebrating National TRA Day 2014 with a grassroots social media campaign using the hashtag #WHATSUNDERHERE.

Each participant receives a pair of boxer shorts with the #WHATSUNDERHERE hashtag on the front. In addition to the shorts, each kit comes with a set of cards with fun and thought-provoking sayings, such as: “Is Cancer Free,” “Looks Great Naked,” “Will Not Take Cancer Lying Down,” among others.

NATIONAL ‘NO BRA’ DAY – Facebook post from July 2011 

Colons are Fantastic… We all think so. And what better way to express the way we feel than to support a full day of colon freedom?? Humans are magnificent creatures, and so are their colons. Let us spend the day unleashing colons from their colon zoos.

Support breast cancer? Really? Does this hideous disease really need our SUPPORT?

Support breast cancer? Really? Does this hideous disease really need our SUPPORT?

People, free your colons for 24 hours by removing those dreadful (but at times oh-so-helpful) underpants. Our poop chutes should not be hidden! It is time that the world see what we were blessed with. Your colons might be colossal, adorable, miniature, full, jiggly, fancy, sensitive, glistening, bouncy, smooth, tender, still blossoming, rosy, plump, fun, silky, Jello-like, fierce, jolly, nice, naughty, cuddly… But the most used adjectives to describe your colons on this day should be joyous, wild, and spectacular.

Everyone can participate! If you don’t want to free your colon, then your job will be to support everyone else by rocking something brown. It can be a brown tie, brown boxers, brown socks, a brown Colon Cancer Awareness Ribbon, I ♥ Colons Bracelet…. If it is brown, it supports us. (Your support means quite a lot to us…)

**If wearing underpants on this day is absolutely necessary, you can definitely show your support by wearing something brown.**

Yay for colons!