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Empowered Patients Change National Cancer Guidelines

When a group of metastatic lung cancer patients took on the National Comprehensive Cancer Network and won.
PUBLISHED: MARCH 02, 2015
I have metastatic lung cancer. Conventional wisdom says that once cancer has spread beyond the original site, cure is impossible and the purpose of treatment is to reduce symptoms and extend the patient's life. Surgery is off the table.

Except.

Except what if the cancer has only just started to spread? What if it has only set up a few metastases (called oligometastatic disease)? Could you push the envelope and try the impossible, to cure stage 4 lung cancer?

A group of patients believed that this idea was worth fighting for.
 
It started with lung cancer patient Chris Newman's participation in an online patient forum, Inspire.com, where she learned about quite a few stage 4 patients with a small number of metastases who had undergone surgery or SBRT (Stereotactic Body Radiation Therapy, a kind of radiation that pinpoints small tumors). These patients had enjoyed No Evidence of Disease for years. They were lucky to have been treated at top medical institutions by doctors who were willing to think beyond the dire prognosis that comes with stage 4 lung cancer. On the flip side, there were many patients on the forum who said their doctors would only treat stage 4 with chemo, regardless of the number of metastases.  
 
Chris realized that if the guidelines could be changed to allow surgery or SBRT for more situations, more metastatic patients might be offered these treatment options. She made the bold decision to approach the National Comprehensive Cancer Network (NCCN) and propose that they change their guidelines. At worst, she thought, the panel will have a good laugh. But the idea snowballed, and a group of lung cancer patients who knew each other through Inspire formed the Independent Lung Cancer Patient Advocates (ILCPA), and they went to work. They pooled their knowledge, connected with lung cancer non-profits, and attended the American Society of Clinical Oncology conference to solicit physician support and bring even more muscle to the fight.
 
Fueled by passion, cutting-edge research, and Twizzlers, the team spent endless hours poring over research, compiling journal articles and a developing a proposal to change the lives of people who had been told that aggressive treatment and cure were not an option; people who had a prognosis of a year, maybe two to live.
 
Fate stepped in. Chris found herself sitting next to an NCCN panel member, Dr. Frederick Grannis, at a lung cancer advocacy conference. He was kind enough to review the proposal and make sure that every member of the panel got a copy of her Addendum Arguments and that the proposal received serious consideration at the panel's meeting.

I've read the complete proposal, and it is pretty brilliant.
 
Here are some highlights:
 
"The life expectancy for Stage IV NSCLC patients is only around 8 to 12 months and 5-year survival rate between 1% and 5%. While a significant portion of clinicians react to the dismal prognosis of this group of patients with therapeutic nihilism or restrict their recommendations to those found only in existing guidelines, the issue of the most appropriate treatment approach is a very personal and subjective one for the patients, who find themselves face to face with their own mortality. Treatment plans for Stage IV NSCLC patients involve personal life/death/quality of life decisions. The patient should have the ultimate right to decide optimal balance of risk, benefit and quality of life, etc., when reviewing possible treatment options with their clinician. They are deprived of this right when they are not presented with ‘all’ reasonably appropriate treatment options."
 
…and…
 
"Stage IV NSCLC patients with oligometastatic disease often are not offered, or even made aware of, the option of aggressive local treatment which may provide long term survival, or even curative benefits, by their clinicians, as current guidelines do not explicitly address this issue, despite persuasive and compelling advances".
 
… and then, they bring it all together…
 
"Therefore, given the grim prognosis for this subset of patients, possibly life extending and/or curative treatment options should be addressed in the treatment guidelines algorithms in ‘all’ instances where there is NCCN consensus that the intervention is appropriate".


So guess what…
 
They did it!
 
As of January 1, 2015, the National Comprehensive Cancer Network guidelines now include information that could dramatically change the lives of stage 4 lung cancer patients with oligometastatic disease.
 
And all because a group of patients raised their voices together and demanded to be heard.
 
On behalf of lung cancer patients everywhere, I offer my enormous gratitude to the patients, caregivers, lung cancer advocacy groups, and clinicians who supported this effort:
 
Chris Newman, Janet Freeman-Daily, George Haughton, Michele Taylor, Robert Young (RIP), Annika Holm, Shane Piers, Addario Lung Cancer Medical Institute, Bonnie J. Addario Lung Cancer Foundation, LUNGevity, Lung Cancer Circle of Hope, LUNGCAN (a collaborative group of 18 lung cancer advocacy organizations), David P. Carbone, MD, PhD, Joe Y. Chang, MD, PhD, Abraham Chachoua,, MD, Maria Teresa Congedo, MD, Raja M. Flores, MD, Gregory N. Gan, MD, PhD, Corey J. Langer, MD, FACP, Michael T. Milano, MD, PhD, Paul Okunieff , MD, Kenneth Rosenzweig, MD, Joseph K. Salama, MD, Alice Tsang Shaw, MD, PhD, Roman Perez-Soler, MD, Tokujiro Yano, MD
 
For more on this story, see "How A Group Of Lung Cancer Survivors Got Doctors To Listen" at NPR.org.
Visit the NCCN website to read the complete guidelines.

 
Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to Cancerland. Stay tuned for her continued adventures.
     Facebook: facebook.com/lungcancerblogger
     Twitter: twitter.com/lil_lytnin
     Blog: "A Lil Lytnin' Strikes Lung Cancer" lil-lytnin.blogspot.com

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Tori Tomalia is a two-time cancer survivor currently living with stage 4 non-small cell lung cancer since May of 2013. Her first cancer experience was childhood osteogenic sarcoma, for which she received chemotherapy and curative surgery, and had been cancer-free for over 20 years prior to the lung cancer diagnosis. Along with cancer, Tori juggles life as a mom of 3 small children, a wife, a theatre artist, writer and lung cancer awareness advocate.
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