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Writing, cancer registries and breast cancer recurrence rates

17 Apr

Ever get a question that sticks with you, that you can’t shake, that you keep ruminating on until you finally get an answer? My niggling question came in via email in the summer of 2015. The person emailing had just read a story I’d written the year before, shortly after I started working at Fred Hutch as a science writer and cancer whisperer. It was called Living with Stage 4: The breast cancer no one understands and featured a couple of patient advocates / friends, Teri Pollastro, still living large, and Jody Schoger, sadly gone.

The question from my reader had to do with a statistic I’d used in this passage: “While treatable, metastatic breast cancer (MBC) is incurable, between 20 and 30 percent of women with early stage breast cancer go on to develop MBC.”

“Can you please tell me where you got the statistic of 20-30%?”

I wrote back the next day, explaining that I’d gotten the stat from 2013 Metastatic Breast Cancer Alliance Landscape report (you can peruse it here). And pasted in the original paragraph from the report: The actual number of new cases of MBC diagnosed each year is unknown. This is because SEER* only records the 5% of newly diagnosed breast cancer patients who have de novo MBC. However, most patients with MBC were first diagnosed at earlier stages of breast cancer that then recurs, months to years later. An estimated 20% to 30% of early stage breast cancer patients will develop MBC sooner or later. The SEER registries do not capture this much larger percentage. As a result, the actual annual incidence of MBC remains unknown.* Surveillance, Epidemiology and End Results program

This was when I first started to clue into the whole SEER data gap issue. The lack of recurrence data was news to me at that point – I was still reeling from treatment, dealing with recon and bootstrapping my way into the world of science and academic cancer research. But it was NOT news to my correspondent, who wrote back to emphasize how nobody really knew the answer, whether it was 5% or 50%, because it simply wasn’t tracked. Naturally, I wanted to write about this. Like immediately. I even replied to the person at 2:15 in the morning on my birthday (!) to tell them as much.

Do I know how to party or what? 😉

You get the problem, though. How could the country’s oldest, most well-respected cancer registry – the premier statistical clearinghouse for cancer information here in the U.S. – not have something as basic as the answer to a question like, “Soooo, roughly how many of us saps with early stage cancer go on to get mets?”

Digging in, I found others were way ahead of me, as usual, particularly Katherine O’Brien and the Metastatic Breast Cancer Alliance who launched a petition in 2016 asking SEER to “Start Counting ALL People Living With Metastatic Breast Cancer.” Katherine was hip to this issue in 2009; I’m sure there are many others who’ve been trying to change it longer than that, including researchers and healthcare providers. My email buddy was one of these people. They wrote back once more, and as mentioned above, their question – a request, really – has stuck with me ever since.

“Bottom line is that nobody tracks the data. The NCI could very easily track it … They track so many little pieces of data … that this would be a piece of cake. If there is anything you can do to help force the NCI or someone else to track those who start out at earlier stages and progress to stage 4, you could be doing a great service.”

As a lowly science writer employed by an NCI-designated comprehensive cancer research center (an admittedly conflicted position), I can’t realistically “help force the NCI” or any federal agency do anything. But like any patient advocate, I can ask questions and have conversations and make connections and talk and tweet about cockamamie cancer issues like this; I can write stories and try to bring awareness to the issue. I can follow the story to see where it goes. And that’s what I’ve tried to do over the last few years.

And happily, I’m seeing change. Maybe even a sea change.

For instance, Dr. Ruth Etzioni, a Hutch biostatistician and modeler who uses SEER registry data to inform ACS and USPSTF screening guidelines, immediately put this on her Scientist Things To Do list. She applied for and got an NCI grant to create, validate and implement a “scalable, automated approach for identifying cancer recurrence.” Another NCI grant and a bit of biostatistical magic helped her and her collaborators pull out key numbers (see below) that give us a much clearer picture of how many early-stager BC patients develop mets. For a breakdown of the findings, check out this Komen Puget Sound FB Live from the 2018 NWMBC Conference. It’s a great panel featuring with Dr. Corrie Painter of the MBC Project and other living legends. Ruth presents her MBC stats about 27 minutes in. Read more on her data mining methods here.

BREAST CANCER RECURRENCE RATES

  • 20% progress in 20 years. 20% of people diagnosed w/ early-stage breast cancer (stage 1 to 3) will go on to develop metastatic disease within 20 years.
  • 17% progress in 15 years. 17% of early-stagers become metsters within 15 years.
  • 20%+ progress in 20+ years. Over a longer time period, the 20% figure will increase.
  • Under 15 years, “very variable.” Within 15 years, it depends on the patient’s age, stage, hormone receptor status, etc.

Science is slow; everything takes years. And sometimes reporting is like that, too. But finally, here are some solid scientific numbers on metastatic breast cancer recurrence. It’s not 5%. It’s not 50%. It’s like 20-30%. It needs to be a 0%, of course, but now at least we know.

And that’s just the start. I was finally able to write that SEER story and am happy to report the NCI is currently working to improve the registry. Thanks to a score of data scientists and biostatisticians and oncologists and registrars and patient advocates and others, they’re finally trying to connect those “many little pieces of data” my email buddy mentioned all those years ago.

This is a long post, and cheers to you if you’re still reading. I guess I just I wanted to share the backstory on this story because it’s not just about hard to capture data. It’s not just about niggling questions or intellectual curiosity. It’s about the fact that not having this information, not even making an effort to collect this information, has left metastatic patients feeling uncounted, unheard, unseen, uncared for. And that’s pretty awful. Year after year, I’ve seen the tweets and posts from the newly diagnosed and those fresh to advocacy as they learn the NCI doesn’t track metastatic recurrence. They’re shocked, sad, outraged, full of disbelief. It’s like a slap in the face. How could they not count us?

I guess I’m writing this post for them. I want people in the cancer community to to know there’s been some progress. The NCI is actively working to bring the SEER registry and its infrastructure into the 21st century so we can finally address these burning cancer questions – and who knows, maybe stumble onto a therapeutic insight or three.

From my conversations with people at the NCI and with researchers like Dr. Steve Schwartz, who maintains the Hutch-based Puget Sound registry and is a cancer patient himself, it’s pretty obvious SEER and epidemiologists and others know this data’s been MIA for way too long. They know it has immense value; they want it as much as patients. Steve and Ruth even joined a couple of Zoom sessions with ACE (Advocates for Collaborative Education) and GRASP (Guiding Researchers and Advocates to Scientific Partnerships) to talk about registry data and field questions about the data gaps.

It’s a massive undertaking and it’s not going to happen overnight, but I’m grateful there is progress to report. I’m grateful that mets patients are being seen and heard and at long last counted. And I can’t wait to see how it all shakes out, because, of course, I’ll keep following the story. I’m kind of annoying like that.

Hope this piece offers you a little hope, especially if you happen to be a certain email correspondent of August 2015. As always, thanks for the read. Much love to all on this sunny April afternoon.

What’s a cancer registry? These large national databases track cancer trends, spotlight health disparities and improve patient care; new linkages allow for even more.

LINK: https://www.fredhutch.org/en/news/center-news/2021/03/cancer-registry.html

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.

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.

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.

It’s my party and I’ll cry if I want to

15 Apr

So I had quite the party last night. There was music, there was wine and there was me, curled up on the couch with a heating pad, an old timey quilt and an ever-diminishing box of chocolate cookies. Yes, as you’ve probably guessed, I was the guest of honor at a good old-fashioned pity party last night, brought to you (or me, rather) by Living with Cancer and My Bad Attitude Productions.  

I’m still not sure what exactly happened or why it decided to happen on what must have been the most gorgeously vibrant spring day in Seattle history. I woke feeling a little under the weather, with fever, chills and a bit of a sore throat and for some reason couldn’t convince myself that going out for a run would be the thing to lift my spirits and clear my head. Instead, I pointedly ignored my running shoes (and the running laptop) and started watching Sex and the City (the movie), which didn’t exactly help my mood. (How could Big do that to Carrie? Why is Carrie reacting like such a dork? And what the hell is with that bird on her head?)

Before I knew it, morning had blended into early afternoon, which then coasted slowly towards late afternoon. And I still hadn’t left the house. I’m not even sure I ate anything, although I did take my medication: the anti-anxiety pill, the tamoxifen, the two tabs of Vitamin D and one tab of Vitamin B12, all chased down by a fish oil tab the size of my little finger. I take all of this crap every day (and more on days when I have bad chest pain or a migraine or can’t sleep), although the only pill that really counts is the tamoxifen, which acts like a hawk-eyed chaperone at a seventh grade dance, perpetually shouldering its way between those two old lovebirds — estrogen and cancer — so they can’t hook up and produce a slew of baby tumors.

And that, I believe, is what was … or is … at the heart of my funk (truth be told, I haven’t quite kicked it yet).

Not that I have any reason to be in a funk. Last Wednesday, I had a stellar one-year follow-up with my breast cancer surgeon, who told me that my left side had healed so well she couldn’t even tell that I’d had radiation there. Plus I’m working as much as I was pre-diagnosis; I just got back from a trip to Arizona and Texas; and spring has finally sprung in Seattle, chasing the constant drizzle and gray away with glorious sunshine and days that stretch on forever (or at least until 8 p.m.).

And yet yesterday (and even Wednesday while talking to my doc), all I could think about was the dreaded R-word: recurrence.

Obviously, with no more “mamm” to gram, that particular method of breast cancer screening is off the table. And in the year since my surgery, I haven’t received an ultrasound or MRI to see if any new tumors have sprouted in my chest. I also haven’t received  any assurances or guarantees that I’m completely out the woods and that I’ll never again have to climb onto the bad carnival ride that is cancer treatment. Instead, I’ve been living in Limbo Land, where ever ache and pain is ripe for a new kind of dark, desperate scrutiny.

My BC surgeon said that a physical examination — which she performed while we chatted about reconstruction, swing dancing and whether or not I could take up boxing — was the best way to determine if I was developing anything hinky in my chest. But what about all the other areas of my body? My liver, my lungs, my bones, my brain — all those places where breast cancer likes to pop up and wreak havoc like a bitter, inebriated ex-boyfriend at your first major book launch.

That’s where things get a little muzzy. According to my oncologist — who’s gone over my recurrence rates with me on more than one occasion — I need to tell her if I start “feeling bad” or suddenly develop a weird persistent pain. Or, I imagine, I end up with a broken rib after getting a hug or a have a seizure while grocery shopping.

Do fever and chills and a sore throat fit within the “feeling bad” category, I wondered yesterday, watching bright sunshine blur into gray dusk. (Or was the fever not a symptom of a cold at all, but one of those infamous hot flashes I was told I’d get as tamoxifen hip-checks me into menopause?) And while we’re on the topic of hinky things developing, what about that sore spot under what used to be my left breast. Was that a tumor starting to sprout or had I knocked myself with the vacuum cleaner handle yet again?

Oh the places you go when you’ve had cancer.

And the things you say. Friday night over drinks with a girlfriend, I casually mentioned that I knew I wasn’t going to live all that long.

“Once you have cancer, you tend to get it again,” I told her, sipping my martini and grazing on a goat cheese, mint and bacon-sprinkled bruschetta. (Might as well live it up, since I’m going to die in ten minutes, ten days, ten years or whatever, right?)

“I’m feeling really blue,” I texted another buddy last night while cancelling plans. “I don’t want to die young and I know I’m going to now.”

Who does that? Who dumps that kind of crap into the laps of their friends? Certainly not me, unless I’m in the throes of a deep emotional funk. Which may or may not be something I should report to my oncologist (Hmmm … I’m normally so upbeat. Perhaps my foul mood is symptomatic of a brain tumor?).

It’s probably just the cold (or allergies) taking me to this dark place. Or the spate of friends and former neighbors who’ve recently lost (or are in the process of losing) a parent, grandparent, spouse or beloved pet. Maybe it’s the one-year anniversary of my double mastectomy, which looms on the horizon like a tax deadline. Or hey, maybe it’s the frigging tax deadline itself.

Whatever the case, I’m blue because I hate not knowing what the hell is going on with my body and knowing that I’ll never really know as long as I live, which I hope will be a long, long time, but chances are it won’t because of this crappy disease.  I’m blue because I’m a bit of a control freak and cancer is not something you can control. Or predict. Or prevent, no matter how much sauteed kale you consume (and trust me, I’m consuming a lot these days). I’m blue because recurrence happens; it’s happened to friends and family members and to some of my cancer buddies on Twitter and while some of these people have been able to stay on top of the disease, it’s not always possible to kick cancer to the curb once it starts “traveling from organ to organ like a gypsy caravan,” in the words of the late, great Dave Hodgson.

I’m blue because it’s gorgeous out and I should be out there celebrating the sun and the spring weather and the life I have while I have it, but instead I’m moping around the apartment “giving in to myself,” as my mother used to say. I’m blue because I’m usually the one trying to cheer other people up when they confess these kinds of dark thoughts and for some reason, I’m not quite able to do that for myself.

I’m blue because I’m angry and scared and don’t feel well and because I have to pay a bunch of money in taxes and I gained like four pounds while visiting my sister in Texas. I’m blue because I don’t have a Mr. Big or a body (or budget) like Sarah Jessica Parker and because despite having cancer, I’m just as shallow and self-absorbed as I ever was.

Oddly enough, though, now that I’ve gotten all this crap off my chest, I actually feel a little better. Thanks for the ear, folks and for stopping by my little pity party, which as of this moment, is officially closing down. Time to go run in the sun. Time to stop whining and live.