Today the Centers for Medicare and Medicaid announced they will cover Next Generation Sequencing (NGS) for cancer! This is a major victory for all cancer patients.
Physicist Stephen Hawking died yesterday at age 76. As a science geek, I was awed by his amazing intellect and ability to explain difficult science clearly. As a metastatic cancer patient, I admired how he made the most of life despite a crippling health condition and grim prognosis.
Below is reprint of a Facebook post (with permission) by feisty science fiction author Pat Cadigan, a friend and ovarian cancer patient. She also knows about making the most of life.
I never met Stephen Hawking, exactly. One day, I was in Covent Garden and as I walked along a sidewalk, two carers were getting him out of a specially-equipped van. I felt it would be inappropriate to stop and gush—the carers were in the act and I would have been interrupting. So I kept going—but I gave him a great big I-know-who-you-are-and-I-think-you’re-great smile. I like to think I saw a twinkle in his eye. I smiled at the carers, too, and they smiled back at me.
(Sometimes I think that they smiled at me because I didn’t look like I was pitying Prof. Hawking.)
When Stephen Hawking was diagnosed with motor neurone disease, he was given two years to live. He spun those two years into nearly half a century. This is practically unheard-of for people with motor neurone disease—it is a terrible, merciless condition that, at the time Hawking developed it, was not even as treatable as cancer. 76 is still too young an age to leave the building; I really hoped he would stay longer.
But while he was here, he made it count, even though he was unable to move, and then unable to speak for most of his life. His mind was lively, energetic, indomitable. He defied his circumstances and his prognosis. Hell, he even left his wife for his nurse—probably not his finest hour, but the heart wants what it wants, even when it’s confined to a wheelchair, unable to speak.
Most of us never achieve Hawking’s level of intellectual brilliance. But we can all try to ‘defy our prognosis,’ so to speak. We can confound expectations. We can make every moment count. We don’t have to accept what we’re told to accept. We don’t have to settle.
Maybe we won’t succeed in defying our prognosis, so to speak. But if we don’t try, we’ll never know.
You don’t have to lie down quietly. Even if you’re paralysed, you can go down swinging.
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:
- How to Navigate a Scientific Meeting by American Association for Cancer Research (AACR)
- Advocate Resources by Research Advocacy Network (RAN)
- Being a Cancer Advocate by American Society for Clinical Oncology (ASCO)
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 Scientist↔Survivor 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.”