8 years in the Cancerverse

ROS1der cofounders Lisa Goldman, Janet Freeman-Daily and Tori Tomalia at the C2 Awards Ceremony in New York City May 2, 2019.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I was diagnosed with stage IIIa non-small cell lung cancer (NSCLC). I had traditional chemo and radiation. Once treatment ended, my cancer immediately spread to a new site. Then I learned about online patient communities, and biomarker testing for genomic alterations, and clinical trials. I had more chemo and radiation. My cancer spread again. Then I tested positive for ROS1+ NSCLC, and entered a clinical trial. Now my  cancer has been undetectable by scans for over 6.5 years thanks to research.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, the majority of lung cancer patients were diagnosed after the cancer had already spread, and half the patients died within a year of diagnosis. Now we have lung cancer screening for those at high-risk of lung cancer, to catch the disease in early stages when it is curable. We have new therapies that are allowing some patients to live well for 4 years or more. In 2011, the standard of care guidelines published by the National Comprehensive Cancer Network for non-small cell lung cancer were updated about once every 5 years.  Now the guidelines are updated about 5 times a year to keep pace with the record number of new treatment approvals that are proving effective for an every-increasing number of patients.

Eight years ago today, I first heard the words, “You have lung cancer.”

In 2011, I had no idea what cancer advocates did. I’d never met any. As I began to feel better, I wondered why I was still alive when so many others had died. Gradually I began supporting others in online forums, telling my lung cancer story, learning about treatment options and research, and sharing my patient perspective with the lung cancer community, medical professionals, and policy makers in hopes of increasing funding, acclerating research, and improving outcomes for other lung cancer patients. Now there are dozens of other lung cancer patients and caregivers advocating as well.

Eight years ago today, I first heard the words, “You have lung cancer.”

From that singular moment of disbelief and panic, I started on a journey that has changed my priorities, and my approach to life in general.  I now focus on living life to the best of my ability (whatever my abilities might be at the moment), on what matters most to those I love, on what will make a difference for other lung cancer patients–especially those who have my rare type of cancer.

I wonder what the next 8 years will bring.


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.

The Power of Lung Cancer Social Media (#LCSM)

Today the Seattle Times published a guest op-ed piece co-authored by myself and Renée Klein, the President and CEO of the American Lung Association (ALA) of the Mountain Pacific.  You can read it here: Medicare should cover low-dose CT screening for lung cancer.

While I hope you’ll read it, that’s not why I’m blogging today.  I’m blogging because I want you to know something.

This op-ed piece was made possible by the power of Lung Cancer Social Media (#LCSM).

When I proposed co-authoring this piece to Renée, she enthusiastically agreed. However, we only had two days and 650 words in which to write it.  I knew the piece required a lot of facts to support the opinion, but which facts about lung cancer screening with low dose CT would have the most impact? Which facts were the most current?  How should we structure the facts to make our point within word count? And where on the web were the sources? The Seattle Times required links to sources before they would accept the piece.

The Lung Association had several necessary facts collected with source citations on one of their webpages.  Their researchers found a few more.  The rest were scattered all over the web. I didn’t have much time to find them, especially when I didn’t know which sources we needed yet.

As I sat staring at a blank Word document trying to compose my thoughts, a fellow founding member of the #LCSM Chat, Deana Hendrickson (@LungCancerFaces), texted me about another subject.  Then it hit me.  I had at my literal fingertips a ready-made community of passionate lung cancer patient advocates and healthcare professionals, each of whom had already demonstrated their desire to see Medicare cover lung cancer screening with low dose CT.  In fact, the #LCSM community had created a change.org petition on this subject in February.

So I made use of those connections. I sent emails and Twitter direct messages to other #LCSM Chat regulars: thoracic surgeon Dr. David Tom Cooke (@UCD_ChestHealth), radiation oncologist Dr. Matthew Katz (@subatomicdoc), and fellow advocates Deana, Laronica Conway (@louisianagirl91), and Andrea Borondy Kitts (@findlungcancer).  Even though they were located thousands of miles from me and were busy with their own jobs and lives, they all responded within an hour. Over the next 24 hours, they helped brainstorm the structure of the piece, provided links to sources they knew, and waded through Google for the additional facts needed to round out the argument.  Andrea carried the research one step further by discussing a difficult point with the lead author of a relevant journal article–he just happened to be in a meeting she attended that afternoon– and feeding me answers in real-time texts.  All of them also reviewed rough drafts and added insightful comments.  It’s as if we were intended to work this project together at that particular time.

Because of  the #LCSM community, my co-author, and my writing critique group (who just happened to be meeting the night I completed the first draft), 23 citations were thoroughly researched and four drafts including the final were completed in less than two working days.

I am amazed and humbled by the dedication displayed every day by the #LCSM community in the fight against lung cancer.

Thanks, everyone.  It truly takes a village.

Guest Post: Does Cancer Screening Cause “Overdiagnosis”?

The guest post below is written in response to Dr. Scot Aberegg’s blog post.  His and other recent blog posts and articles have claimed “overdiagnosis” of breast cancer and lung cancer due to screening.  Andrea Borondy Kitts, a former engineer and fellow Lung Cancer Social Media tweeter whose husband died of lung cancer last year, addresses Dr. Aberegg’s claims in her letter.


Dr. Aberegg, thank you for your interesting post on overdiagnosis problems with breast and lung cancer screening. I would like to comment on many of your points.


I am a mechanical engineer.  I have a Master’s degree in Management and retired after a 32 year career in aerospace, 10 years as an executive. I am back in school getting a 2nd Masters degree, this time in Public Health. I advocate for lung cancer as a volunteer for the American Lung Association, for the National Lung Cancer Partnership, on twitter as @findlungcancer, and for several Hartford CT area hospitals with their lung cancer screening programs. I lost my husband, Dan, to lung cancer on April 12th, 2013 after an 18 month hard fought battle. Dan had all the risk factors for lung cancer. He was 69 years old at the time of his diagnosis, he had quit smoking 11 years prior to his diagnosis, he had an 80 pack year smoking history, his sister had died of lung cancer at age 62 and Dan had COPD. Unfortunately, at the time of his diagnosis, lung cancer screening was not recommended.

Comments on the BMJ paper about the Canadian National Breast Screening Trial:

We had a 3 hour discussion in my UConn Chronic Disease Control class last week about the recent British Medical Journal (BMJ) paper on the 25 year follow up to the Canadian National Breast Screening Study. In attendance were 2 cancer epidemiologists, one a breast cancer expert, and an oncologist with breast cancer expertise.  In conclusion, the consensus among the experts was the study did not provide enough credible evidence to change the recommendation for breast cancer screening in the US.

Key concerns raised with this study:

  • In the mammography group 2/3 of the breast cancers found were palpable. This is not consistent with clinical breast screening experience where most breast cancers found with mammography are too small to feel.
  • Screening was only for 5 years. Most breast cancers are slow growing so may not have screened long enough to capture the difference in mortality. The risk for breast cancer increases with age, so each passing year after the screening stopped the women had a higher risk of getting breast cancer. The number of breast cancers found in the mammography and non mammography arms were the same after the 5 year screening period was stopped.
  • Although mortality did not differ between the 2 groups, the cancers found in the mammography group were smaller and less were lymph node positive.
  • The study is predicated on universal access to adjuvant therapy. Canada has a National Health System so all women have access to care. This is not the case in the US.

Other discussion points:

  • There are 22 million women in the US between the ages of 40 – 49. Not screening this population would save a lot of money.
  • Need to have better genetic markers for who will develop breast cancer to risk stratify the population to screen

My “take-aways” from the discussion

  • Large screening clinical trials/studies are hard to do right especially with decades of follow-up; often new technology and new treatments can overtake results
  • Policy can be influenced by strong advocacy sometimes resulting in non-evidence based recommendations
  • Even the experts don’t fully understand the results and don’t know how to apply to population recommendations

Comments on lung cancer screening:

The most important point to consider when comparing lung cancer screening to Mammography or PSA screening is that lung cancer screening is different.  Screening is limited to the high risk population and the gold standard randomized trial, the National Lung Screening Trial (NLST), showed a 20% mortality reduction with LDCT screening versus chest x-ray.

I don’t understand the derivation of your NNS of 950. The original paper published in the NEJM calculates the NNS as 320 for the NLST study population.

One of your discussion points focused on all-cause mortality being biased lower in the LDCT group, not because of incidental findings, but because of changed behavior in the LDCT group with false positives; for example smoking cessation. I do not think this biases the results. The results are a real, albeit, an unintended benefit for LDCT screening. The public health and medical communities have been continuously searching for ways to influence people to adopt healthy behaviors.  It’s wonderful, if in fact, LDCT screening provides a “teachable moment” resulting in healthier behaviors and improved outcomes.

Your discussion about telling folks to quit smoking as a better alternative to lung cancer screening is flawed in that, more than 50% of lung cancer diagnoses are in former smokers. These are people who have already quit smoking. Their only hope for improved survival is for secondary prevention in the form of early diagnosis with LDCT screening.

Your discussion about older people not being screened due to overdiagnosis because of mortality due to other causes is disturbing. You seem to be advocating that when people reach a certain age, we should give up on any type of screening because they will probably die soon anyway. I was particularly shocked with your statement “What if, in essence, we save a lot of people from lung cancer who then die from a heart attack 6 months later?” This would imply we should not treat any disease with a 6 month or less prognosis; let’s just save the money, 6 months is not worth the expense to society. WOW. You criticize the USPSTF final recommendation to screen to age 80 as too old. However, you neglect to mention the USPSTF modifier that “screening should be discontinued once a person has not smoked for 15 years or develops a health problem that substantially limits life expectancy or the ability or willingness to have curative lung surgery”.

And finally you discuss how a physician patient discussion on lung cancer screening might go. I would like to add a few more scenarios to your hypothetical discussion.

  • There is now a recommended screening test for lung cancer for a high risk population. I think you might be in the recommended to screen group. I wanted to review your risk factors with you and discuss if screening might be right for you.
  • It’s great that you stopped smoking 11 years ago. However, your risk level is still elevated. Your heavy 80 pack year smoking history puts you at increased risk. We know there is a strong dose response relationship with smoking and lung cancer. In addition, knowing that your sister died at age 62 from lung cancer, puts you at increased risk as well. You also have COPD another known risk factor.  I have a risk calculator I use to help me stratify risk for my patients. http://www.brocku.ca/lung-cancer-risk-calculator
  •  There is a 25% chance you will have a finding from your screening. 95% of the time it will not be lung cancer. Most of the time, the follow up to the finding is another LDCT. There is a small possibility you would have a more invasive procedure. However, the benefit of finding lung cancer at an early stage is improved survival. At stage 1a there is an 85% chance you will be alive after 5 years. At stage 4 that is less than 10%.
  • Based on your risk profile, I think you should consider LDCT lung cancer screening.

The point is that each patient is unique and the discussion with the patient should be tailored to the risk profile for the patient. The discussion you portray would not be appropriate for my hypothetical patient, who yes, happens to fit the profile of my husband who died in April 2013 from lung cancer.

Lung cancer is the leading cause of cancer deaths in men and women in the US and worldwide. It is the second leading cause of all deaths in the US after cardiovascular disease. More people die of lung cancer than breast, colon, and prostate cancer combined. Five year survival at 16% is essentially unchanged since 1975. We finally have a screening test for lung cancer and if everybody would stop trying to discredit the test and just get out of the way we will save lives!