Advocating for Cancer Patients
During a liver panel test, Swapna's 75-year-old father-in-law, Sainath, had high levels of gamma-glutamyltransferase (GGT), which prompted concern. However, the doctor dismissed her and her family's worries by claiming nothing needed to be done. Her family had regular preventive checkups, a rare luxury in India. During Sainath's routine ultrasound exam, the results showed lesions in his liver. Again, the doctor dismissed the findings by claiming that lesions were common in older people and most likely benign.
Despite the doctor's claims, Sainath had risk factors for liver cancer, which included diabetes, fatty liver, and obesity. Twenty days after Swapna met with the gastrointestinal (GI) and interventional radiology (IR) physicians, Sainath felt uncomfortable during dinner. Swapna and her family noticed that his stomach was bloated. Suddenly, he collapsed, so they took him to the ER. When Swapna told the doctor about Sainath's CT scan, he said there was possibly a hemorrhage from a burst lesion. Five hours later, a different IR did an embolization to stop the bleeding.
One week after the embolization, Sainath's friend, a neurosurgeon, helped them find a good team of hepatologists. Although he was in his 70s, the hepatologists recommended liver resection (i.e., surgery) as a treatment option. They told Swapna and her family that he was a good candidate for resection and it was possibly curative. Sainath agreed to have the procedure done.
The hepatologists followed up with Sainath every three weeks after the procedure. They tested his Alpha-Fetoprotein (AFP) and Protein Induced by Vitamin K Absence or Antagonist-II (PIVKA-II) levels, which are biomarkers for the management of hepatocellular carcinoma (HCC). Sainath recovered well, was very active, and had no major symptoms. However, a year after the resection, he started having abnormal levels of PIVKA-II. His doctor told them that there were issues in the peritoneal and referred him to an immunotherapy treatment recently approved by the FDA. During his immunotherapy sessions, his side effects included extreme fatigue and depression. He also started having Parkinson's disease, which was possibly induced by his treatment.
Though Sainath's HCC has stabilized, he now experiences symptoms of Parkinson's disease. Every three months, he has a regular follow-up with a liver panel and biomarker tests. Since his treatment was not covered by insurance, Swapna and her family paid approximately $40,000 for his immunotherapy treatment, even with a patient assistance program. Furthermore, they had to constantly pester their social worker about any financial aid to pay for the treatment before they were referred to a patient assistance program. Unfortunately, India lacks patient support communities and patient advocacy organizations. Swapna's search for support ultimately led her to Blue Faery.
