Archive | Awareness RSS feed for this section

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. 😉

Cancer patients and the COVID-19 vaccines

17 Jan
Everybody should get vaccinated – even cancer patients and chorus girls!

In my latest for Fred Hutch, the cancer/virus/disease research center where I work, I dig into some of the questions I’ve seen swirling around on Twitter and Facebook as to whether cancer patients should get one of the two new “double-whammy” vaccines from Pfizer and Moderna.

Short answer: yes and as soon as possible (with a couple of caveats).

Definitely talk to your oncologist about your immune system if you’re currently getting any kind of immunocompromising treatment, such as chemotherapy. (Anti-hormones, which many of us are on for years, don’t qualify as immunocompromising.) You’ll also probably want to get the shots timed so your immune system is at its strongest. People with active cancer (I take this to mean stage 4, newly Dx’d folx) and those in active treatment should be prioritized, per Hutch public health researcher / oncologist Dr. Gary Lyman, since the complications from COVID-19 can be a lot worse for these peeps.

And YES, you still have to mask up after getting vaccinated: we don’t yet know if vaccinated people can infect others or not. BUT we sure know a lot more than we did last year when this creepy zoonotic virus first raised its spiky crowned head. And just so you’re aware, 3 out of every 4 new or emerging infectious diseases in people come from animals.

If you really want to dig in to the COVID-19 vaccine and specifics about mRNA, transplant patients, etc., you can hear a lot more from infectious disease (ID) and cancer experts like Gary and Dr. Steve Pergam on this ASCO/IDSA webinar.

Let me know if you have questions and I’ll try to follow up with more resources. In the meantime, #MaskUp #KeepYourDistance and #JustKeepSwimming

Cancer patients and the COVID-19 vaccines

The initial batch of COVID-19 vaccines are now available in the U.S. following incredibly fast — “warp speed” — development and testing.

Not so incredibly, there’s a lot of confusion among cancer patients — as well as their oncologists and caregivers — as to whether the vaccine is a good idea or a bad idea for somebody dealing with cancer.

The two Food and Drug Administration-approved vaccines from Moderna and Pfizer-BioNTech, each requiring two shots a few weeks apart, were more than 94% effective at keeping this new coronavirus in check in testing on thousands of volunteers in clinical trials. But only a handful of the clinical-trial participants were cancer patients.

Other COVID-19 vaccines are in development and will be available in the months ahead. Additional trials involving subpopulations (think children, pregnant women, people with health issues) are also in the works.  

But what do we do now that states are ramping up the vaccination efforts to eligible groups?

Patients with cancer are particularly vulnerable to COVID-19 because of the immunocompromising nature of cancer treatments. On top of that, progressing cancer itself depletes the immune system and leaves patients susceptible to infection.

Does that mean cancer patients should be first in line for their shot — or last? If they’re in treatment, could a vaccine make them sicker? What about those with metastatic disease who are always in treatment — can they get it? And are survivors the same as the general public? 

Full story here: https://www.fredhutch.org/en/news/center-news/2021/01/cancer-patients-covid19-vaccine-coronavirus.html

Cancer and the coronavirus: hard prep

3 May

COVID19 image double whammied blog

Ghecemy Lopez of Los Angeles, a two-time cancer survivor who now has immune issues. She dons plenty of PPE for her doctor’s visits. 

It’s pretty much been corona, corona, corona these last few months — even in Cancerland — and I don’t imagine that will change much moving forward.

States are starting to open up — Washington will get there eventually —and I pray everyone out there stays safe as we slowly creep forward with our masks and mad soap & water skillz and (hopefully) enough sense to stand far enough away from people that we don’t accidentally breathe in any virus particles they may be talking, sneezing, laughing, singing, coughing or farting our way.

Sadly, it looks like we’re going to be here a while. Yet another new normal.

Like everybody else, I’m hoping science can find or fast-track better treatments than remdesivir (the Tamiflu of COVID-19, just emergency approved by the FDA) and that other drug combo the orange guy in the White House keeps chatting up, along with sunlight and bleach, as a fabulous miracle cure.
FaceSlap
Like everybody else, I’m praying a vaccine isn’t too far off in the distance.
First time I typed that, I wrote vacuum, by the way, which may tell you where my head is.

I used to blame that sort of thing on chemo brain; now I think it’s more quarantine brain. It’s Tuesday, right? June 32?

As soon as we started hunkering down in early March and I saw how freaked out people were about the epidemic — all the uncertainty, the life or death odds, the extra precautions we all had to take to stay safe, the lack of a cure — it struck me as weirdly familiar. So I wrote about it for Fred Hutch News Service.

 

For those who’ve been diagnosed with cancer, the onset of the coronavirus pandemic has felt a little, well, familiar. The frantic Googling and data-gathering. The denial and disbelief. The uncertainty and panicky behavior. Cancer patients have been there.

Same goes for all the handwashing and hypervigilance. People who’ve been through surgery or radiation or chemotherapy or bone marrow transplants or other immunocompromising treatments are routinely forced to hunker down at home, avoiding crowds and friends with colds, skipping weddings and air travel and ordering their groceries online.

As one Seattle survivor put it, “I’ve sheltered in place lots of times.”

Did your cancer diagnosis and treatment ‘prep’ you for the COVID-19 pandemic? Certainly feels that way to me, same for the enforced quarantine after my ankle break last August.

Will the losses we’ve endured as cancer patients — family, friends, fellow advocates gone to another invisible enemy — help us bear the inevitable COVID-19 deaths ahead? It’s tough stuff, but as with cancer, we all have to somehow keep powering through.

But right now, it’s all feeling pretty old.

I’m getting corona-cranky after two months of hiding out at home. I’m angry about the people who’ve died and who keep dying because of our country’s clown car response to a deadly pandemic. I’m getting homesick (ironically) for restaurants and yoga studios and my old boring cubicle at work.

So I’m going back to peruse a few of these lessons from cancer patients in the time of coronavirus. Feel free to join me. Or send along your own. I’m having way too many arguments with my cat (and the little snot keeps winning).

#StayHomeStayAlive
#JustKeepSwimming
#FUcancer #FUcovid19

Coronavirus: what cancer patients need to know

8 Mar

CORONAVIRUS INFOGRAPHIC2So now there’s a pandemic. And my workplace and our scientists are right in the thick of it. I interviewed a couple of friends and Fred Hutch experts: one in infectious disease (Dr. Steve Pergam) and one in public health, health policy, outcomes AND oncology (Dr. Gary Lyman) to find out who’s most at risk for contracting COVID19.

That’s the brand new coronavirus that apparently leapt from some type of animal to somebody in China and now the infection has spread from there to Italy, Japan, Iran, South Korea, Thailand, you name it and now Seattle, where I’ve lived my entire “adult” life.

As it turns out, we’re now the country’s COVID19 epicenter. Not really all that much better than our previous reputation as Serial Killer Central.

Anyway, these two devoted scientists shared great data on COVID19 and who it picks on the most. They also had some great tips on little things we can do to boost our immune system (get that sleep!) and keep this new beast at bay.

Here’s their advice for cancer patients (past and present) and other folks with underlying health conditions (think COPD, heart disease, diabetes, HIV).

Wash your hands and read on.

Coronavirus: what cancer patients need to know: Advice for cancer patients, survivors and caregivers on who’s most at risk for COVID-19 and what you can do to stay healthy


FULL LINK:
https://www.fredhutch.org/en/news/center-news/2020/03/coronavirus-what-cancer-patients-need-to-know.html

Spinning science: how to cut through overhyped health news and medical misinformation to get to the truth

16 Feb

spinning science

My science writing team at Fred Hutch put together this series of stories to help the public — and especially cancer patients — cut through all the harmful health misinformation and overhyped nonsense that’s out there these days.

Boy, could I have used this back in the day.

When I was first diagnosed, it was hard to figure out what to believe, there was so much back and forth. Mammograms save lives! Mammograms actually give you cancer! Wine is healthy! Wine will kill you!  What was I supposed to take away from that? I would always try to go to the source, but deciphering scientific papers wasn’t easy either, not once they descended into TILOA, The Indecipherable Land of Acronyms, a confusing place full of scientific doublespeak and mind-bending biostatistical models.

If that’s you, I’m hoping this series will help. There are six stories in all. Great explainers on many aspects of clinical and epidemiological research (the stuff most likely to hit the headlines and get skewed), including sample size, correlation and causation, absolute vs. relative risk (spoiler: it has nothing to do with your family), open science, types of studies. There’s even some baseball statistics. Naturally. The Hutch is the only cancer research center named for a baseball player.

Spinning Science Series: Read all about it!

Give it a read and please share with anyone who’s a little science curious around the  edges, like me. Here’s a short link to the whole shebang: fredhutch.org/spinning-science  As always, thanks for the read and #FUcancer!

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

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!

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