Archive | April, 2021

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

Cancer, COVID-19, science and learning to trust

4 Apr


Photo courtesy of Robert Hood / Fred Hutch News Service

I’ve been too busy writing lately so I haven’t had much time to write. Does that make sense?

Here’s the deal (as our fabulous new President would say – and what a blessing to be able to say that right?), I’ve been working on a novel. Like for the past two years and then some. Through all of 2019 and the ankle break that kept me stuck inside for nearly five months. Through all of 2020 and this pandemic, which has kept us all stuck inside and away from each other and life’s many wonderful distractions and is still, I’m sad to say, not over by a long shot.

And here’s the thing. I just finished it, the book. Title is #IMPATIENT. It’s a dark romp about cancer and other stuff. Like crime and friendship and the whole cancer industrial complex. It’s in the hands of a few trusted readers at the moment. As soon as they’ve found, and I’ve fixed, all the plot holes and bad science and insipid dialogue, it’ll be off to the agent. I hope.

And then I’ll need to figure out what to work on next — in the realm of fiction, anyway.

In the realm of nonfiction, there’s the all too real world of cancer and COVID-19, both of which I write about for my job-job at Fred Hutch. For the record, I didn’t come to science or the field of science writing intentionally. I was a writer, sure, but science wasn’t my subject. I sort of stumbled into it after being diagnosed and treated for breast cancer. I wanted to learn more about how cancer operated, how it all worked, so I could do my part to take it down.

With all the incredible sciencing going on with COVID-19 (along with the conspiracy theories and vaccine hesitancy), I decided to write about my complicated relationship with science and how I learned to trust it with my life after being diagnosed with cancer. Because I’d never felt healthier in my life than when they told me I had stage 3 lobular. Here’s some of it:

When somebody in a white coat tells you something you don’t want to hear, it’s easy to decide they’re full of beans — especially when nothing seems amiss.

I’d never felt healthier in my life than the day I was diagnosed with cancer (10 years ago this month). I had no fatigue, no lingering cough, no unexplained weight loss, not even a dang lump. All I had was a tiny tuck on one breast. But the doctors said they both had to go. They said I was stage 3 and needed chemo and radiation and then would have to take hormone-squelching drugs for the next 10 years.

Getting that news was like having a piano fall out of the sky and land on my head. You may recognize the feeling from last March when a concert grand called SARS-CoV-2 landed on all of ours. Part of me desperately wanted to ignore the surgeon, the scans, the histopathology, those microscopic images of my suffering tissue. That part wanted to run off to Mexico and bury my feet — and my head — in the sand.

Instead, I talked to friends and family and to other women who’d been down this road. Then I took a deep breath and trusted the science, even though I only understood a fraction of it. And I soon discovered cancer treatment was much less awful than I’d anticipated. Top-notch anti-emetics meant zero nausea; problematic low white cell counts were boosted with a belly shot of Neulasta (and no, not the kind you did in college). My regular jogs, which I thought of as therapy, actually were, according to the epidemiological studies I was now reading on the reg.

I was swayed. Science was something I needed to stay alive. 

FULL LINK: https://www.fredhutch.org/en/news/center-news/2021/02/learning-to-trust-science-with-your-life.html

Here’s the whole essay Learning to Trust Science with Your Life published a few weeks ago. Feel free to take a read. As always, take care and thanks for stopping by. I imagine I’ll have much more to share in days to come. 😉