Written by Lisbeth Garassino, TargetCancer Foundation Advocacy Council Co-Chair
Michelle Pratt chatted with us via Skype during a chemotherapy treatment in Charlotte, North Carolina to tell us about her journey with cholangiocarcinoma.
It’s a weird place. It’s strange to be both the provider and the patient.
Michelle Pratt is a 45-year-old nurse-practitioner whose cholangiocarcinoma returned earlier this year. Pratt is a wife and mother to her son Alex, age 18, and daughter Tori, who is 15. She is also guardian to Jes, age 30, a nonverbal young man with autism who she met while teaching autistic students before she began her medical career. Pratt now serves in-patient residents at the V.A. in Salisbury, North Carolina as a nurse-practitioner.
Michelle with best friend and caregiver Keshia Pettus
For me it is a balancing act. I have to remember to be the patient and allow my treatment team to take care of me. Most of the time I can play that role but every now and then I pull the medical provider card and request certain things such as copies of labs, imaging reports, etc. As a medical provider I know the severity of my disease but I choose to be the patient and know that I can be cured.
In 2011, Pratt had what she thought was a gallbladder attack while she was at work. With an upcoming long drive north to visit her father in New Jersey, she didn’t want to get stuck along the way so her pain prompted her to call the doctor.
Although she was a healthy 40 year-old, the diagnosis was non-metastatic intrahepatic cholangiocarcinoma. Pratt had a bumpy ride with her primary care doctor who didn’t know how to handle the diagnosis, so she visited a gastroenterologist who referred her to a surgeon, leading to chemo and radiation treatments as well as a liver resection. She was declared to be in remission.
Then in September, 2015, Pratt began to have back pains so she returned to her doctor who attributed the pain to weight gain and believed it could be sciatica. Her doctor told her not to be concerned. But four years to the day since she was first diagnosed, Pratt learned her cancer had returned- this time, metastatic cholangiocarcinoma to her back and lungs.
In February 2016, Pratt attended the annual Cholangiocarcinoma Foundation Conference in Salt Lake City, including the Nursing Advisory Board meetings. She requested a position on the Nursing Advisory Board so that she could be more involved in outreach for the Cholangiocarcinoma Foundation. Pratt believes that there still isn’t a lot of information available to patients, being that cholangiocarcinoma is a rare cancer. Pratt also thinks that the scientific data doesn’t always reflect what the medical community is seeing, such as the rising phenomenon of young people who are being diagnosed with cholangiocarcinoma.
Michele in Salt Lake City, 2016.
As a nurse practitioner, my training is a bit different than the average medical training. Nurses tend to look at qualitative data as well as quantitative data. This data should include a focus on survivorship and quality of life. There are so many of us that have 5 plus years of good living. This would help those who are just learning about the disease to see that there is some hope and quality of life. That having this cancer doesn’t always mean a death sentence because groups like TargetCancer Foundation are advocating, educating, and providing financial support for more current research.
Pratt reads every medical journal possible, which has led her to better understand her disease, but she makes the choice to downplay some particulars as the outlook and prognosis is disheartening. When she tells other medical personnel of her diagnosis, they get the “cancer face” look. Still Pratt thinks that she has been able to have more in-depth conversations with her medical team due to the fact that she too, is a medical professional. This has also led her to gain insight on how providers talk with patients, and she has used her own experience to help connect with her patients at the VA medical facility in a more meaningful way.
Pratt thinks we need more available resources to help rare disease patients find out what other people in similar situations are doing. She also believes we need to do more to increase rare cancer research while empowering people to fundraise for it, and write to their members of Congress to let them know rare cancer research is vital. Pratt thinks there should be task forces to join and that it is worth it to invest in a younger generation what wants to participate and advocate to accelerate rare cancer research.
I think there should be letter writing campaigns and phone calls to our state representatives asking them to support rare cancer research. Research is the only way we will see these cancers eradicated.
The team at TargetCancer Foundation wishes Michelle and her family peace and support for their journey. If you are interested in connecting with Pratt, reach out to: Lisbeth@targetcancerfoundation.org and she can connect you.