How it started
“My father came to me with abdominal pain that wouldn't go away. He's a quiet, stoic man - for him to mention pain at all, it meant something. We saw a gastroenterologist, who ordered a CT scan. There was a mass in his pancreas, and spots on his liver.”
“The biopsy came back: well-differentiated neuroendocrine tumor, Grade 2. The oncologist explained that NETs are different from other cancers - slower, more treatable, but not curable when they've already spread.”
“My father's first reaction was relief. He thought it would be much worse. My mother's reaction was tears. Mine was Google.”
The first 18 months
“He started monthly octreotide LAR injections. The pain went away within weeks. His scans were stable for a year - same number of tumors, same sizes. Then around month 16, a scan showed new liver spots.”
“The oncologist mentioned Lu-177 DOTATATE therapy. I had never heard of it. He explained how it worked. The Ga-68 DOTATATE PET showed his cancer cells expressed the target strongly - he was a clear candidate.”
Choosing to start
“My father is in good health otherwise - golfs three times a week, walks every morning. He didn't want anything that would knock him out. The oncologist explained that Lu-177 DOTATATE therapy is much gentler than chemo. Hair stays, energy mostly stays. That sealed it for him.”
“The cost was around $6,000–$8,000 USD per session - $24,000–$32,000 USD for the full 4-session course. Mediclaim covered part of it. We covered the rest as a family - my brother and I both contributed. It was a stretch, but feasible.”
The treatment
“The amino acid infusion was the hardest part of treatment days. He'd feel nauseous through it. The anti-emetics helped. The Lu-177 DOTATATE therapy itself, he felt nothing. Total day at hospital was about 5 hours.”
“After each cycle, he'd be tired for 2–3 days, then back to normal. He golfed the weekend after cycle 1. By cycle 3, he was joking with the nurses about being a regular.”
“My mother handled the radiation precautions seriously. They slept in separate rooms for 3 nights after each cycle. He used the guest bathroom. The grandchildren kept a meter of distance - we made it a game. It worked.”
The results
“His chromogranin A levels dropped after cycle 2. By cycle 4, they were back to near-normal. The scan three months after his last cycle showed shrinkage of the pancreatic mass and stable liver spots. The next scan, six months later, showed continued shrinkage.”
“That was almost five years ago. Every six months we get scans. So far, stable. He golfs three days a week. He travels with my mother. He plays with the grandkids. He's in better shape than I am, honestly.”
Caregiver lessons
“A few things I wish someone had told me earlier:”
“Get the right scan early. The Ga-68 DOTATATE PET was the crucial test. Without it, we wouldn't have known he was a Lu-177 DOTATATE therapy candidate. Insist on it if your oncologist hasn't mentioned it.”
“The amino acid is harder than the medicine. Mentally prepare your loved one for the nausea during that infusion. It's not a sign that the treatment is failing - it's just the amino acid.”
“Treat it as a chronic condition. NETs aren't curable, but they're very treatable. We learned to plan around quarterly scans. Life continues. Hope is real.”
“Caregivers need support too. I had panic attacks for the first month after his diagnosis. I started seeing a counselor. It helped. Cancer is a family disease - get help if you need it.”