What do you get when you combine a brilliant biomedical scientist, a sarcoma diagnosis, and a mother load of courage? Answer: Dr. Corrie Painter, The Angiosarcoma Project, and our inaugural Portraits in Courage post.
I am in awe of her story, and you will be too. Although it starts as a life with a wonderful husband and two very young girls, turned upside down by a devastating cancer diagnosis, trust me when I say that this journey takes those lemons and squeezes out an astonishing truckload lemonade.
Corrie was diagnosed with primary breast angiosarcoma in May 2010 – at only 36 years old. This rare sarcoma (Nothing like being diagnosed with a RARE form of a RARE cancer. Gosh, I’ve learned to hate that word.) is diagnosed only 300 times per year globally, which strikes in the lining of the blood vessels of the body. It took numerous biopsies over a 5-month period to nail down a precise diagnosis and form a treatment plan – which Corrie sadly points out is way faster than normal for most angiosarcoma patients. She credits her surgeon at Dana Farber for making the call to perform a more radical surgery that “saved her life” since initially she was given months to live.
So how did Corrie learn about her disease and find support for this rare cancer? Being a scientist, Dr. Painter instinctively turned to PubMed, but these academic publications devastated her as she read the depressing bits of data. She also did Internet searches to try to find others with the diagnosis. When she did find names of people who were reaching out for connection and contacted them, she rarely got a response. That’s because she would find their obituary. Corrie said that each time “it was a black hole that opened up next to her and sucked out every ray of hope.”
In a last ditch attempt to learn and connect, she turned to Facebook and found the Angiosarcoma Cancer Group – formed by Lauren Ryan – with 10 people in it. Although a tiny group, they seemed to house the world’s knowledge of this disease. They knew which doctors to see. They knew side effects. Most importantly, they were all ALIVE! “We were instantly bound by something far greater than you can experience with another person outside of the bond of marriage and parent/child relationships,” says Corrie. (See https://www.facebook.com/groups/101899709845272/)
Lauren Ryan had also formed the Angiosarcoma Awareness Foundation, and together these tightly bound friends continued to nurture the nonprofit and the Facebook support group together. Corrie took the advocacy baton from the hand of her beloved friend in 2014 when she sadly passed away, and has continued the work on behalf of Lauren and all other sufferers. Today there are over 2,000 people in the Angiosarcoma Group on Facebook, and 100-200 at any one time actively exchanging information and supporting each other.
But Dr. Corrie Painter did not not stop there…not by a long shot…
Corrie realized that there was a potential treasure trove of data inherent in the interactions through Facebook. She was determined to find a way to look at these cases and begin generating data as to the underlying how’s and why’s of this cancer. She completed her PhD, then a fellowship in cancer immunology, and decided to pursue a career focused on patient advocacy and science.
And, now? Today, Dr. Painter is a grateful angiosarcoma survivor of 6 years (in remission!). She is the Associate Director of Operations and Scientific Outreach for the Metastatic Breast Cancer Project at the Broad Institute of MIT/Harvard. Starting in October of 2015, patients with Stage 4 metastatic breast cancer began authorizing the collection of tissue, saliva samples, and medical records for cataloging, study, and genomic testing. Already more than 2,000 patients from 50 states have stepped forward to advance research through this social media driven approach (see www.mbcproject.org for more information)! This project has been very well received by patients, who feel “first in class” in bringing translational medicine directly to them for the first time. Why? They feel connected to the entire process. They were engaged in things like website build out and the patient questionnaire. They send back personal notes and saliva kits that their children color directly to scientists – making everyone feel personally connected to each other and galvanized to the project. It has far exceeded everyone’s hopes and expectations. This same approach will be launched on September 1st for angiosarcoma, and Dr. Painter and the sarcoma community couldn’t be any more excited!! The Broad hopes to take this same direct-to-patients initiative and apply it to this rare cancer that couldn’t otherwise be studied thoroughly. She is hoping to get 50-100 people living with the disease to go through the whole process of getting clinical information, tumor samples, saliva and perhaps blood. She wants to engage everyone still alive (or those family members who lost loved ones) to collect information in perpetuity in order to gain a clinical and genomic understanding of angiosarcoma. And our bet is on her! (See https://www.facebook.com/groups/1556795987968214/ to read the direct input by patients, families, and advocates to the Broad scientists as this Angiosarcoma Project continues to develop.)
As a scientist and as a patient, Dr. Painter believes that we need to have models where everyone at the table is learning from each other – patients, pharmaceutical companies, payers, doctors, and designers – and converging all of this into a better research system. Her vision at the Broad Institute is based upon a “learning health system”, where information isn’t lost, where patient experiences don’t happen in vein, and where we can all learn from each other because data isn’t silo’d off. Ultimately, resulting in better health outcomes. In fact, only a few weeks ago Corrie was personally invited by Joe Biden’s office to attend a Summit of the recently announced Cancer Moonshot initiative. As part of the big data working groups, she gave significant input about including research in the continuum of healthcare, including patient visit data being available for use in future clinical trials and other translational research in our country. “The healthcare system needs to become a learning system and not just a reactionary system,” says Dr. Painter.
All of us at the Paula Takacs Foundation honor Dr. Painter’s courage – not only to battle for the sake of her own health – but to bravely take center stage in the advancing of cancer research for thousands of other sufferers. We proudly stand behind her efforts, so stay tuned for updates on the Angiosarcoma Project later this year.
So is that some awe-inspiring lemonade, or what?