Why I’m Behind on My Patient Advocacy Projects

Today is a relatively typical day.  I’ve been up for 2.5 hours.  I haven’t tackled any major projects yet. Why?

6:50–7:20 AM
Wake up a few minutes before the alarm, take anti-reflux pill, check email, get up, step on scale, be bummed (again) about my post-cancer-treatment weight gain, resolve to spend at least 30 minutes on the treadmill this afternoon, brush cats

7:20-8:20 AM
Get dressed, help with family breakfast, help son get ready for school, help hubby with shopping list, eat breakfast (had to wait an hour after taking anti-reflux pill), log food intake in LoseIt! (only 360 calories for breakfast–yay!), take cancer pills, check Twitter, pet cats

8:20-8:45 AM
Load dishwasher, have several writing ideas flood into my head while washing big pots, clean up mess I made on the counter while distracted by writing ideas, realize my chemobrain has forgotten all writing ideas, play with cats

8:45-9:20 AM
Check Facebook while drinking milk/coffee, look at pile of urgent family paperwork, decide I should start on a lung cancer advocacy article, go see what cat is playing with, write blog post instead (with feline oversight)

But the day is young, the cats are now napping, and coffee is kicking in.  I still have hope I shall actually accomplish something today.

Oh, look, the hummingbird feeder is empty …


Why Aren’t Never Smokers Screened for Lung Cancer with LDCT?

As you’ve probably heard, 25% of lung cancer patients worldwide are never smokers.  Like all lung cancer patients, the majority of never smoker LC patients are diagnosed with metastatic lung cancer, even though they often have no real symptoms.  How come lung cancer screening guidelines don’t suggest never smokers get screened for lung cancer?

Well, it’s all a matter of risk reduction.

Medical practitioners (and those who pay for their services) do not like to run a medical test when the patient might be put at risk for little benefit.  This is a concern if a test is not 100% accurate and follow-up procedures for a positive result are potentially invasive.  This is the situation with LDCT screening.  With today’s technology, a lung cancer diagnosis can only be confirmed with a biopsy, which is invasive and does carry some risk.  And, lung biopsies are not guaranteed to detect a cancer, even if one is present.  Lung cancer screening with low dose CT might generate a false positive (meaning the test says the patient has lung cancer when they really don’t). False positives could result in unnecessary invasive follow-up procedures with some risk to the patient.

For this reason, LDCT screening is only recommended for those who are at HIGH RISK for lung cancer. At this time, “high risk for lung cancer” means current or past heavy smoking history and age 55 to 75. These risk factors were not chosen due to stigma or discrimination. To date, these are the only two risk factor scientifically demonstrated to have a HIGH correlation with lung cancer in several studies. A very large clinical trial (the National Lung Screening Trial, or NLST) showed people who had these risk factors were likely to benefit from lung cancer screening with LDCT despite the risks of false positives.

For these patients at high risk for lung cancer, the benefits of screening outweigh the risks.  LDCT screening reduced their lung cancer deaths by 20% compared to screening with x-rays, simply by detecting the lung cancer before it spread and getting it treated early.  By the way, NO deaths due to LDCT screening occurred in the 53,000+ participants enrolled in the NLST.

Since lung cancer occurs in a low percentage of the never smoker population, the risk of screening doesn’t make sense for never smokers unless they have another high risk factor.

We know of other risk factors associated with lung cancer–radon gas in homes, air pollution, previous cancer treatments (especially radiation treatment to the lungs), exposure to certain hazardous materials, even an inherited gene.  However, analysis to date hasn’t shown any of these factors have as strong a correlation with lung cancer, possibly because it’s harder to track those risk factors in a controlled study.  As we learn more about how lung cancers get started, and how they differ from each other, we are likely to discover more HIGH risk factors that can be validated by objective analysis.

This definition of “high risk” and this method of screening are just the first steps in early detection for lung cancer. As more high risk factors (like the inherited version of the T790M gene) are validated by objective studies, people who have those risk factors should also be included in covered lung cancer screening, whether or not they have a smoking history.

As more accurate and less expensive lung cancer screening technologies become available, testing will become more accessible to everyone.  Someday–hopefully in our lifetimes–accurate lung cancer screening will be as easy as a blood test or spitting into a test tube, without the need for a biopsy.

So keep supporting more research!  We need accurate, affordable early detection of lung cancer in never smokers.

Why Advocates Seem to Talk So Much About Lung Cancer Screening

On Thursday, September 25th, 8PM ET/ 5PM PT, #LCSM Chat will discuss the existing barriers in lung cancer screening in late 2014.

Recently I’ve heard some lung cancer patients say they feel abandoned by lung cancer advocacy groups.  These patients think the groups are focusing too much on early detection with lung cancer screening, and have abandoned those who already have the disease.

As a metastatic lung cancer patient, I don’t feel abandoned.  I feel lung cancer advocacy has never been more vibrant or successful than it’s been in the past year.  In the past year, lung cancer advocacy has featured:

  • Wide-spread national media coverage about lung cancer: Valerie Harper on “Dancing with the Stars” and other national shows, national news coverage of testimony on Capitol Hill about the need for lung cancer research funding, the “Turquoise Takeover” of prominent landmarks, and Molly Golbon’s cancer journey documented on NBC, for example.
  • Print and online articles discussing the need to eliminate lung cancer stigma and featuring the hope offered by new treatments and clinical trials.
  • More advocates, patients, doctors, and researchers posting and collaborating with the #LCSM hashtag on Twitter.
  • An increase in lung cancer bloggers compared to last year.

The focus of lung cancer advocacy hasn’t shifted away from research or treatments.  By my count, there are more new treatment options offered or announced this year for a wider range of lung cancer types than in any previous year: two new FDA-approved targeted therapies,  immunotherapy trials for all lung cancer types, an innovative new trial for squamous cell LC, a new study of Young Lung Cancer, new targeted drugs for mutations, newly-discovered mutations … the list is long.

Lung cancer screening with LDCT is a big deal because it is projected to save 18,000 lives PER YEAR by catching lung cancer before it spreads.  That’s more lives than most new targeted lung cancer treatments will save in a year.

We’re seeing more public discussion of lung cancer screening than treatments for four reasons:

(1) Lung cancer screening with LDCT gained major support at the end of 2013.
In December 2013, the US Preventative Services Task Force recommended lung cancer screening with LDCT.  As a result, the ACA now requires private insurance plans to cover LDCT as of January 2015.

(2) LDCT is becoming more available.
More hospitals and clinics are beginning to offer LC screening with LDCT, and are advertising that fact.

(3) The need for support is urgent.
The majority of lung cancer patients are over age 65.  In February, the Centers for Medicare and Medicaid (CMS) began evaluating whether to provide insurance coverage for LC screening with LDCT.  CMS will decide in November.   We must act NOW.

(4) Individual advocates have a chance to make a difference that will save lives.
The CMS decision is being made by a branch of the US government.  Our voices are needed to ensure those over 65 have access to LC screening, since most of them have Medicare as their primary insurance.  Lung cancer advocacy organizations are leading the charge.

The lung cancer community is still dedicated to raising awareness for ALL lung cancer patients and increasing research that will allow more lung cancer patients to be cured or to live with lung cancer as a chronic illness.   Advocating for LC screening is just one way to help more patients survive.  It’s part of the 2014 sea change in lung cancer.


Last Monday and Tuesday, September 8-9, I was in Denver for my clinical trial at University of Colorado Hospital (UCH). I had my once-every-eight-weeks PET-CT scan along with a once-every-six-months brain MRI.

I’m happy to report that both scans were clean. I’m now twenty months with No Evidence of Disease of metastatic lung cancer.  That Xalkori is great stuff for those of us with ROS1 NSCLC!

I’ve been in my clinical trial for 22 months, and the trial has been running for over three years. The medical journal article summarizing trial results is due out sometime in the next two weeks.  Judging from the response to Xalkori of several ROS1ers I’ve met online, I expect the news will be positive.  Can’t wait to read it–I’ll probably hustle to the University of Washington Library and download it first chance I get.  Yes, besides being a science geek, I’m an INTENSE science geek.  One of those “complete response” lines on the waterfall plot will be ME!

The scanxiety for this visit was different than my previous visits to Denver. It’s been a very busy summer for me.  As I posted previously, before flying to Denver I attended the Stanford Medicine X conference in Palo Alto September 4-7.  I gave my speech on lung cancer stigma on the main stage Sunday morning, left the conference a couple of hours early to fly to Denver Sunday night, and had my clinical trial labs and scans Monday.  I was so focused on the conference and my speech that I barely noticed any scanxiety –it was difficult to distinguish from the intensity that precedes my speaking publicly.  The only real indication of any anxiety was my increasing inability to focus during the conference and three hours of lost sleep the first night in Palo Alto (although my husband might have a different perspective about my intensity in the days before I flew to Palo Alto).

A few other things were different about this clinic visit:

  • On the day of my visit, I spent an hour talking with the American Lung Association of Colorado’s office about LUNG FORCE.
  • A pleasant UCH oncology Fellow conducted my clinic visit. My primary oncologist Dr. Camidge came in to chat with us both for a few minutes afterwards–he knows I always have a list of questions for him. We talked about an exciting new clinical trial design at UCH for FGFR-positive NSCLC (more on that in a future post).
  • UCH had recently installed new software for their MRI machine, so the report of my brain MRI was not available at the time of my clinic visit. However, Dr. Camidge and the Fellow both reviewed the scan itself and reassured me it was normal.
  • After Dr. Camidge completed his clinic hours on Tuesday, he joined me, Dora (an online friend of mine who is also his lung cancer patient), and Dora’s husband Bill for a chat at a restaurant near UCH. How many world-renown lung cancer doctors do that? Well, yes, I did bribe him with a cup of coffee and a pastry. Here’s a selfie we took:

selfie with Camidge

Something else was also new to me after this clinic visit. I had a headache after I arrived home.  Since I’d just had a clean brain scan two days before, I knew the cause could not possibly be a brain met.  Somehow this reinforced the feeling that I was more a normal person than a cancer patient at this point.  Sometimes a headache is just a headache.

The brain MRI report appeared in our mail yesterday. It didn’t say much except “normal,” but a few terms were new to me.  I was Googling the new terms when an infolinks box popped up with this message:

“Searching for T2 hyperintensities in white matter? Try Kelley Blue Book!”

Maybe Kelley Blue Book can tell me how my hyperintensities affect the resale value of my brain.

My 2014 Stanford Medicine X Experience (Sep 4-7)

I’m in Palo Alto, CA for four days attending the Stanford Medicine X (#MedX) conference, which focuses on emerging health-care technology and patient-centered medicine. The first day was a pre-conference workshop on Partnering for Health in clinical trials.

I’m having a blast! It’s like a giant TweetUp of patient advocates, healthcare providers, and technology innovators. I’ve met a dozen people that I’d previously only known online. Several of them are patients who are healthcare bloggers and tweetchat moderators like me and have diseases different than mine (diabetes, arthritis, lupus, other cancers, etc.) My roommate is a delightful young pre-med student who happens to love chocolate, and who has had no sense of smell for as long as she can remember (which is fortuitous, considering one of my Xalkori side effects).

Presentations and panels address the evolving nature of healthcare, with a strong emphasis on patient involvement. Some topics:
–How to include the patient voice when designing clinical trials
–How do patients who are not tech savvy (“no smartphone patients”) obtain medical records and learn about their disease?
–Technology to assist those with disabilities
–New apps and devices for improving outcomes (e.g., a device that tracks when bedridden patients need to be turned to avoid bedsores)
–The value of relationships in promoting health
–Training medical students and doctors to incorporate empathy in patient care and ask the patient what is important to them
–Patients self-tracking their health data (e.g., diabetes blood levels and insulin doses)
–Which metrics to use when choosing a doctor, and where to find them, and new ways to gather the info

At least half the people in the audience are interacting with their smartphones, laptops and tablets during the event. I can see how all the online activity is extending the reach of the conference, which is also being streamed live (except when the server crashes from overwhelming demand). It is fascinating to watch the presentations and simultaneously read a very active #MedX Twitter stream that summarizes, critiques and expands on what is being said.

I’ve seen some cool vendor demos also, like 3D printing of medical models and devices:


My speech is tomorrow (Sunday September 7) at 10:10 AM PDT. Hope you’ll be watching via Medicine X Global Access! If you miss it, it will be posted online eventually.

I fly to Denver Sunday evening for my eight-week scan on Monday. I must admit this conference is a great scanxiety distraction.