Speaking as a Patient at MedX

Just realized I have a Speaker Profile Page for the 2014 Stanford Medicine X conference. This is really going to happen! Only 69 days to go–I better start writing my speech. And maybe get a professional headshot.

Edited 7/2/2020 to add screen caps of MedX profile:

#JACR Chat 6/26: Patient Perspective on Lung Cancer Screening (#LCSM cohosts)

(This is a reblog of today’s blog on the #LCSM website)

On Thursday June 26, at 12 noon Eastern Time, the Journal of the American College of Radiology (#JACR) tweetchat will discuss the patient’s perspective of lung cancer screening.  It will be hosted jointly by #JACR and #LCSM, using the hashtag #JACR, and will be moderated by Dr. Ruth Carlos (@ruthcarlosmd) of #JACR with guest moderators Ella Kazerooni, MD, and Janet Freeman-Daily (@JFreemanDaily) of #LCSM.  #JACR posted about the chat and provided the following information:


“Ruthie, your dad fell down and now he has cancer.”

My dad had tripped down a short flight of steps to the basement.  In Urgent Care, he received a chest X-ray for shoulder pain, inadvertently detecting his lung cancer.  I was grateful that he accidentally fell, grateful that he received a chest X-ray rather than shoulder X-rays, grateful that I still have my dad, a 70 year old man who smoked two packs a day since he was 18.

The survival rate for early stage lung cancer is nearly 50%.  The survival rate for late stage disease is less than 5%.  The U.S. Preventive Services Taskforce (USPSTF) recommends a more systematic way to screen individuals like my dad:  use low dose computed tomography, also known as low dose CT or LDCT, to find early stage lung cancer.  The National Lung Screening Trial  enrolled more than 53,000 participants in a study. It showed lung cancer screening with LDCT resulted in 20% fewer deaths from lung cancer compared to screening by chest x-ray.  On the strength of these findings, the USPSTF showed strong support and issued a “Grade B recommendation” for lung cancer screening with LDCT, requiring private insurance plans to completely cover this service.  Medicare administrators now are weighing the decision to cover lung cancer screening, balancing the benefits with the unintended harms.

Some of the harms associated with lung cancer screening include “false-positives”—detected nodules or tumors that are actually not cancer.  Low dose CT can also detect abnormalities outside the lungs, such as thyroid nodules or heart problems.  These are called “incidental findings” or “incidentalomas,” most of which are benign.  However, because a small percent of incidentalomas turn out to be potentially harmful, additional diagnostic testing may be required. These additional procedures can lead to increased cost to the patient, even if the screening test is free.  Both false positives and incidentalomas can potentially increase patient anxiety, test-associated radiation, and out-of-pocket costs.

Understanding patient concerns about lung cancer screening is essential to fully implementing this life-saving medical service of LDCT.  Patient-Centered Outcomes Research, or PCOR, focuses on addressing patient questions such as “What can I do to improve the outcomes that are important to me?” and “How can clinicians and the care delivery systems they work in help me make the best decisions about my health?” Per a USPSTF recommendation, the ECOG-ACRIN cancer research group proposes to develop a registry of participants who receive lung cancer screening in order to understand the full patient experience, including what outcomes, benefits and harms are most meaningful to patients, how to consistently communicate these benefits and harms, and how to support patient choice regarding screening. ECOG-ACRIN is one of the National Cancer Trials Network groups launched this year by the National Cancer Institutes. It is implementing PCOR principles in the development phase of the registry to incorporate patient voices and perspectives.

Here are the four questions that will be discussed during the Tweet Chat:

T1: What clinical, psychological and cost outcomes are most important to patients who receive lung cancer screening?  #JACR

T2: Some lung nodules detected by lung cancer screening are “false positives” (not cancer).  What effect would this have on you? #JACR

T3: Lung screening might detect other conditions (e.g., thyroid and heart) needing more tests. What concerns you about this? #JACR

 T4: What aspects of lung screening benefits and harms are difficult to understand? How might understanding be improved? #JACR

If you would like to be considered for a patient advisory panel about lung cancer screening or want to tell us about your experience, email us at lungscreeningregistry@gmail.com.

Moderators for This Chat

@ruthcarlosmd (Ruth Carlos, MD), Deputy Editor for JACR and Co -Chair of the ECOG-ACRIN Patient Centered Outcomes and Survivorship Committee. 

@JFreemanDaily (Janet Freeman-Daily) , cofounder and comoderator for Lung Cancer Social Media #LCSM Chat on Twitter.

Special guest: Ella Kazerooni, MD, Cardiothoracic Division Director and Professor of Radiology at the University of Michigan, is the Vice Chair of the National Comprehensive Cancer Network (NCCN) lung-cancer screening panel.  She recently testified before the Medicare Evidence Development & Coverage Advisory Committee on the value of lung cancer screening and the need for Medicare coverage of LDCT.

Any port in a scan

I’ve had a Bard power port in my upper left chest almost 30 months, since December 2011.  This consists of a small titanium reservoir with a layer of silicone under my skin, connected to a catheter than runs into a vein near my heart.  I originally had it implanted so chemo could be administered through the port, sparing my veins.  While I don’t need it right now to receive treatment–I take my targeted therapy as a pill–the port is accessed every month for my clinical trial blood draws, and every other month to administer contrast and the FDG tracer for my PET-CT scans.

Ports are really convenient.  I don’t have to get poked every month, I can shower and exercise with it (unlike my former PICC line), and after so many months, the scar from the implant surgery isn’t even noticeable.  All that’s visible are three tiny bumps on a slightly raised, faintly bluish area under the skin. The only accommodation it requires is a small pad between it and my seatbelt when driving.  I’ve heard of people keeping a port for several years.

Here’s the hitch.  My port has misbehaved fairly often since it was implanted. I am apparently very good at growing a fibrin sheath over my port’s catheter. When a sufficiently long fibrin sheath , similar to the stuff in blood clots, forms over the catheter, it’s impossible to draw blood–the suction from the blood draw pulls the loose flap of the sheath over the tip of the catheter and closes it off.  The problem seems to be worse if I’m dehydrated.

To keep the port accessible, it gets flushed with drano on average every 1.5 months. No, not Drano the household chemical.  Drano is my not-so-affectionate name for TPA (sometimes called Cathflo), a chemical which dissolves the fibrin sheath and clears the catheter. Typically, a small amount of TPA (just enough to fill the catheter but not go into the bloodstream) is injected and left in the catheter for about 30 minutes, then withdrawn.  Usually this clears the port, although sometimes I’ve had the stuff left in overnight to clear a particularly persistent blockage–one interventional radiology xray showed I had a sheath about two inches long at the tip of my catheter. Well, everybody needs a skillset.

The fibrin sheath also sucks up the FDG tracer used for PET scans, so I often have a very bright spot on my scan right at the tip of my catheter.  The radiologist can see the catheter in the associated CT scan, so he knows that hot spot is just the fibrin sheath, but sometimes I wonder if that spot could overshadow a tiny cancer nearby.

I’ve considered having the port removed surgically and just tolereating the monthly needle pokes for my labs and scans, but to be honest, my veins aren’t very cooperative nowadays either. I’m going to keep the port in as long as the drano can keep it functional.  I just plan to drink a few quarts of water the day before it’s used so I’m well hydrated, and show up early for lab work in case my port needs a dose of drano.

My monthly labs today required more than the usual amount of blood. However, my port worked perfectly! I felt like celebrating, so I ordered a grande soy mocha at the clinic’s coffee stand.

I forgot to say “half-decaf.”

I expect to get an amazing amount of work done this morning and early afternoon. Just don’t expect much from me after 3 PM.

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.