#LCSM Chat Topic 3/8/2018: Cancer Advocacy 101–Patients & Conferences

Chemist Jean Cui at #ASCO17 posters with #ALK & #ROS1 NSCLC patients who thrive on drugs she helped develop

As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences.  On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.

Some reasons for cancer advocates to attend medical conferences are to:

  • Learn more about cancer and treatment options for cancer
  • Get details about new research
  • Meet the top doctors who treat their type of cancer
  • Support an advocacy organization’s outreach booth
  • Network with other advocates, as well as clinicians and researchers
  • Share an advocate’s perspective on a specific topic, sometimes as an invited speaker

As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?

Tools exist to help advocates navigate cancer conferences and understand the content they will see:

If you know of other resources, please share them in the comments on this page or in the chat.

Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:

  • AACR’s ScientistSurvivor Program
    Participants receive travel grants and participate in special educational programs at cancer research meetings.
  • ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
    Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
  • RAN’s Focus on Research Scholar Program
    Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
  • International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
    Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:

  • T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals?  To the conference?
  • T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
  • T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
  • T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
  • T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?

We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”

Finding Myself in Antiquity

Wonder why I’ve been relatively quiet online recently? I just returned from a 15-day “Cities of Antiquity” cruise in the Mediterranean aboard the Viking Star. This trip gave me a much-needed mental health break–I actually spent two whole weeks on something other than lung cancer (though I did sneak online for 10-20 minutes several days).

Since I was still rehabbing my foot, I used trekking poles on walking tours and my knee roller on the ship to avoid overdoing. My left foot did not swell or turn blue even on days when my fitbit clocked over 10,000 steps. The tours gave me the most exercise I’ve had in six months, which is probably why I didn’t gain any weight on the trip despite the abundance of food, tempting desserts, and wide variety of gelato flavors.

Lots of perspective and leasons learned to be found in other cultures’ 3000+ years of history.  We visited Athens, some Greek islands (among them Mikonos and Rhodes), Cyprus, Israel (Jerusalem, Nazareth, and the Sea of Galilee), Naples, Pompeii, and Rome. It was well worth yesterday’s 29-hour travel day (Rome to Seattle) and the upper respiratory infection that followed me home.

More pictures to come.

The start of something big …

I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient­‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.

A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.

Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend.  I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority.  Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat.  I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building.  Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!

A Natural Remedy for Cancer Scanxiety (Almost)

When basking in the wonders of volcanoes, rainforests, and oceans, I can focus on something other than cancer for a while.

When heading to a cancer center for brain and body scans, not so much.

Still, facing the possibility of progression is easier when I’ve been immersed in nature for a few days.  I suspect most cancer patients might benefit from a “nature break” to combat scanxiety before a scan.

My 2016 WorldCon Schedule


Below is my MidAmeriCon II speaking schedule: a couple of cancer panels, a couple of space panels, and a reading (yes, something new). Come find me at the Kansas City Convention Center August 17-21 and say hello!

Living with Cancer
Wednesday 8/17/2016 14:00-15:00, 2206 (Kansas City Convention Center)
$£%* Cancer. Our panel talks about the experience of cancer, how it affected their writing and lives, and how we can support the fan community.
Janet Freeman-Daily, Rosemary Kirstein, Ms Pat Cadigan (M), Priscilla Olson

Reading: Janet Freeman-Daily
Thursday 8/18/2016 16:30-17:00, 2202 (Readings) (Kansas City Convention Center)
Janet Freeman-Daily

Defining Acceptable Risks in Space Exploration
Friday 8/19/2016 11:00-12:00, 2502B (Kansas City Convention Center)
The further we move into deep space exploration the more we have to ask, to what extent it can be risk-free, or at least risks limited. We consider the risks, what can be done to guard against them, and how much risk do humans need to accept — at least in the early stages.
H.G. Stratmann (M), Henry Spencer, Jerry Pournelle, Janet Freeman-Daily, Frank Wu

Space Technology Spinoffs
Saturday 8/20/2016 16:00-17:00, 2210 (Kansas City Convention Center)
There have been some 2,000 technological products, inventions and ideas trasferred from NASA missions to commercial products and services. Of these, many have made life on Earth better in the fields of health and medicine, transportation, public safety, consumer goods, energy and environment, information technology, and industrial productivity. Panelists discuss their favorite examples of space technology spinoffs.
Mrs. Laurel Anne Hill, Les Johnson, Janet Freeman-Daily (M), Joy Ward, Brenda Cooper

Cancer Treatment
Sunday 8/20/2016 10:00-11:00, 3501H (Kansas City Convention Center)
In the last year fandom has lost many good people to cancer – both fans and creators. Many members of our community are currently being treated or are in remission and more people get diagnosed everyday. Our experts have an informal discussion about how cancer is currently treated and what it will look like in the future.
Janet Freeman-Daily, Dr. Ronald Taylor

You can also visit my official schedule page on the MidAmeriCon II website.

My Upcoming Appearances: Westercon 69 (July 4 weekend)

Over the 4th of July weekend I will be attending Westercon 69 in Portland, Oregon, where I will speak on three panels and conduct one Kaffeeklatsch. I will also be participating in a lung cancer meetup in Portland on Monday July 4 at 10 AM–please post in the comments if you want to be part of it.

Here is my tentative schedule at Westercon:

How being an engaged patient can save your life (Hawthorne)
Friday Jul 1 5:00 pm – 6:00 pm
Patients around the world are changing the healthcare model by becoming partners in their own care. What is an engaged patient, how can you become engaged, and why should you care?
Ari Goldstein, Ellen Klowden, Frog Jones, Janet Freeman-Daily, Jennifer Willis

Recent Scientific Breakthroughs – What (Lincoln)
Saturday Jul 2 1:00 pm – 2:00 pm
Is it black holes, gravitational waves, global warming, a new species discovered, or something else? Which recent discoveries intrigue you most.
Dan Dubrick, Gregory Gadow, James Glass, Janet Freeman-Daily

Kaffeeklatsch (Multnomah)
Sun Jul 3 11:00 am – 12:00 pm
Small group discussions with authors, artists, and other interesting personalities (referred to as “hosts”) Sessions are limited to the host and a small group of attendees.
Ctein, Daniel H. Wilson, Janet Freeman-Daily, Jeff Sturgeon, Manny Frishberg, Sara Stamey, Sue Bolich

Is Gibson Getting Out of Hand? (Hawthorne)
Sun Jul 3 1:00 pm – 2:00 pm
Is corporate control of research and the drive for short-term profit crippling scientific innovation and basic research? Do established companies always feel threatened by new technology and lobby for legislation to restrict it?
Bob Brown, Frank Hayes, Janet Freeman-Daily, Jim Doty

Communing with a Giant on Cancer, Life

This past week I attended the Rainforest Writers Village with twenty or so other science fiction writers.  The resort where we stayed is on the southeast tip of Lake Quinault, adjacent to the southern border of the Olympic National Park in Washington State.  It was quiet, beautiful, and slow-paced—the perfect place to take a break from everything and focus on my writing.

After lunch the first day, I decided to take a meditation walk along the lakeshore in hopes of absorbing some of the abundant tranquility. When I walked this same path 14 months ago (December 2014), Washington was experiencing a drought. This year, we’d had our wettest winter EVER, and the level of the lake reflected the additional rainfall.  Tree roots normally anchored on the mossy bank now stood in a couple of feet in water.

The first hours of the retreat were graced with several downpours, but for the moment, the rain had stopped. I took deliberate steps along the soggy pathway, carefully placing my feet to avoid adding another fall to my medical file.  I concentrated on taking slow, deep breaths.  Gradually my thoughts came to rest in the moment.  I smelled the surrounding evergreens, felt the moist rainforest air, heard the enthusiastic creek swollen with runoff, saw a raven stepping carefully on puddled lawn.

I meandered past deserted trailer slots and a closed bathhouse to the end of the campground, where stood the World’s Largest Sitka Spruce Tree.  There I encountered a couple of other writers who were also taking a break from their labors.  We imagined the tree was lonely and had called for company.  Eventually, the others wandered off, leaving me alone with the tree, and my thoughts.

Despite hundreds of droughts and downpours, the thousand-year-old giant before me stood firmly anchored in the earth, continually adding rings to its impressive girth.  The diameter of its trunk exceeded twice my armspan, and the massive roots spread at least twice again as far.

Standing under its broad arms, dwarfed by its great size and age, I was struck by … Read more