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.

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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.

The elephant in the bedroom – yeah, I talked about sex after cancer treatment

3 Aug
elephant

Illustration by Kimberly Carney / Fred Hutch News Service

Sex after cancer is complicated. You know what else is complicated? Writing about sex after cancer.

I tackled the topic last week in a two-part series for FredHutch.org. And even though it felt like I was walking around in my underpants when the stories came out (I talked a little bit about my own experience in this realm), I’m glad I covered it because it’s a big issue for cancer patients and it doesn’t get a ton of attention.

As I said in the story, cancer cuts us to our sexual quick. We lose body parts. We lose our libido. Oftentimes, we lose our sexual selves. Men struggle with impotence; women are plunged into menopause decades before they would naturally arrive; and many are left to sort it all out on their own.

Why? Because people often don’t feel comfortable talking about this stuff – not doctors, not patients, not even their partners. Sex after cancer has become the elephant in the bedroom.

Here’s a link to Part 1, which covers the sexual aftermath of cancer treatment and how surgery, chemo, radiation and hormone treatments — all those things they do to keep us alive — can cause all kinds of sexual side effects, from fatigue and body image issues to erectile dysfunction and vaginismus.

And here’s Part 2, which offers a few experts tips and tricks that we as patients can use to hack our post-treatment sex life.

As I said, it’s not easy to write about this stuff or talk about this stuff. So I’d like to give a huge shout out to two amazing patients: stage 4 anal cancer patient Michele Longabaugh and testicular cancer patient Jon Dibblee. Both were kind and courageous enough to talk about the sexual challenges they’ve faced since treatment and I can’t thank them enough for their candor and insights. Many thanks, also, to Nicki Boscia Durlester and her private breast and ovarian cancer Facebook group, Beyond the Pink Moon. It’s so important to have safe, supportive places like this where patients can bond and bare all.

Did your cancer and treatment lead to sexual side effects? Did your doctor downplay the damage or mention it at all? Let me know in the comments section. Still have more to say? Please join me and the folks at Fred Hutch  tomorrow (August 4) at 10 a.m. (Pacific) for a tweetchat on the topic. Use #ChatFredHutch to join the conversation.

tweetchat image.png

Connecting and cancer whisperering

11 Jul
throwback Thursday pic - BC.jpg

Me in 2011, post double mastectomy and mid-chemo.

When I first started DoubleWhammied shortly after my breast cancer diagnosis in February 2011, it was because I needed a safe place to process all the mindblowingly weird stuff I was going through, to tear it up and work it out with equal parts rage, humor and F-bombs.

Cancer and its treatment were terra incognita for me back then – a large, black hole filled with fear and horrible misperceptions. I’d never known anyone who’d gone through breast cancer – or any cancer, for that matter – and was terrified that I was going to be disfigured and dead within months. At the very least, I thought I’d be transformed into some gaunt, sad scarecrow figure who shambled around the neighborhood, scattering children and dogs wherever I went.

A double mastectomy, three months of chemo, six weeks of radiation, four reconstruction surgeries and five years of tamoxifen later, I’m still here. The misperceptions – and the need to process – not so much.

Much has changed, in fact.

Instead of working as a freelance writer, penning pop health and humor pieces and dreaming of hitting that New York Times bestseller list, I’m writing public health news for Fred Hutchinson Cancer Research Center and advocating for patients in every way I possibly can. Helping people understand the disease, the treatment, the research and the progress that’s been made has become much more of a priority now.

me testifying

Testifying in front of Washington State legislators in June 2015

In a nutshell, I want to help those who don’t have it, avoid it; help those who do have it, get rid of it, and hold out my hand to those lurching up the cancer road behind me as so many others held out their hand to help me when I first diagnosed.

These days, I’ve become a sort of “cancer whisperer,” tapped by friends and friends-of-friends and total strangers when they or someone they love is handed a scary, unexpected diagnosis. Cancer is no longer a swirling black hole of fear for me. As a recently diagnosed friend put it, “It doesn’t freak you out like it does everybody else.” Cancer is still scary, of course, especially when the time comes for me to go in and have my six month oncology check-ups, but it doesn’t hold the same power over me it once did.

I know a bit more about the biology of cancer now. And I know a lot more about how researchers are trying to outsmart it. I’m even working with some of those researchers, taking their studies, screening guidelines, policy recommendations, cancer prevention tips and more and translating what can often be confusing scientific-speak into something usable and understandable. I’m also sharing patient perspectives with them regarding the shortcomings of treatment and care, the gaping holes in communication (I’m still hearing about women not being told they’ll lose all sensation after mastectomy) and the shenanigans insurance companies try to pull on those who are too sick to advocate for themselves.

I’m “cancer whispering” through each and every one of my stories for Fred Hutch, trying to help the public understand that lung cancer isn’t just a smokers’ disease, that stage 4 breast cancer is very different from early stage breast cancer and that a person’s cancer isn’t over just because their treatment is.

In five years, I’ve basically gone from freaked out cancer neophyte to fledgling patient advocate, which seems to be a natural trajectory for many cancer patients. The more suffering you see (or experience), the more you feel compelled to help. Some people do this by holding fundraisers or creating cancer nonprofits and online cancer communities. Others attend ASCO  or AACR and blog about new research or testify before lawmakers to increase awareness and funding or send cheek swabs to strangers in lab coats in order to expedite crucial research.

A few of them (I’m looking at you, Beth Caldwell), do it all.

I’m not much of a fundraiser or businessperson, but I do know how to tell stories. And share information. And connect people. So I’m doing that.

me and corrie

Me and the amazing Corrie Painter of the Metastatic Breast Cancer Project during her recent visit to Fred Hutch.

What that means for those of you reading this is that rather than blogging, I’m throwing most of my energy into my work at FredHutch.org these days. And while there aren’t as many F-bombs in the stories I write there, you will find a slew of stories and service pieces to help you and your loved ones navigate the crazy carnival ride that is cancer.

Not to mention a whole lot of science. Some of which is actually starting to make sense (well, maybe not that whole zinc finger thing).  ; )

If you’re coming here for the first time as a newly diagnosed breast cancer patient, please feel free to start from the bottom of the blog and read up. You’ll find a ton of information about breast cancer surgery, chemo, radiation and reconstruction. There’s also good information, insights and inspiration in the many wonderful comments other cancer patients have left over the years. If you’re an old friend, this is just a note to let you know why the blog has long stretches of radio silence.

As always, thanks for the read and your ongoing support as the two of us – me and my spotty online persona DoubleWhammied – continue to morph and grow and carry on our mission of kicking cancer’s sorry ass one step, one story, one bad joke at a time.

Peace out and #FUcancer!

Coming to terms with your post-cancer body

7 Mar
Photo by Robert Hood / Fred Hutch News Service

Photo by Robert Hood / Fred Hutch News Service

Once you’re flagged as somebody who might have cancer, you’re basically strapped onto the world’s worst carnival ride.

The ride starts off slowly at first with biopsies and consultations but then once you’re diagnosed, it picks up speed. Then there are scans, MRIs, surgery appointments, oncology consults and shopping excursions to buy things you’ve never heard of like surgical camisoles. Suddenly, the Merry-Go-Round or Tilt-a-Whirl or whatever it is starts going at breakneck speed. You go through surgery, you go through chemo, you go through radiation, you do it all. You get used to this new reality, this tumultuous spinning wheel of blood draws, port infusions, belly shots of Neulasta, daily blasts of radiation. You go around and around, back and forth, up and down, over and over. You’re strong and on top of things one day; you’re addle-brained and couch-bound the next. You spend all of your time in pajamas and patient gowns. You forget how to talk to people. You forget who you are. You’re bald, boobless, beaten down and burned to a crisp. And then suddenly, you’re pushed off the Tilt-a-Whirl or Octopus or whatever it is and told to go back to your normal life. The ride is over.

The only problem is, you’re still spinning.

Ever see somebody get off a high-speed carnival ride that’s suddenly stopped short? They stagger. They lurch. They might even walk into a pole. Or do a face plant onto the sidewalk.

That’s what life after cancer treatment was like for me: a great big WTF. I couldn’t trust the ground under my feet. I couldn’t trust my own body. I couldn’t even trust the reflection staring back at me in the mirror.

I tried to capture what it was like coming back from that and coming to terms with my new body and my “new normal” in this latest essay for FredHutch.org.

Writing about post-cancer body changes – and body image — has, by far, been the hardest thing to put into words and share with others. To be honest, it feels a lot like showing up at work in your underwear. But as vulnerable as it makes me feel to put this out into the world, I think it’s important to let people know about the collateral damage of treatment. And let other cancer peeps know they are most certainly not alone.

As always, thanks for the read, people.

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!