How it started
βMy father came to me with abdominal pain that wouldn't go away. He's a quiet, stoic man β 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.β
βThe biopsy came back: well-differentiated neuroendocrine tumor, Grade 2. The oncologist explained that NETs are different from other cancers β slower, more treatable, but not curable when they've already spread.β
βMy father's first reaction was relief. He thought it would be much worse. My mother's reaction was tears. Mine was Google.β
The first 18 months
βHe started monthly octreotide LAR injections. The pain went away within weeks. His scans were stable for a year β same number of tumors, same sizes. Then around month 16, a scan showed new liver spots.β
βThe 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 β he was a clear candidate.β
Choosing to start
βMy father is in good health otherwise β 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.β
βThe cost was around $6,000β$8,000 USD per session β $24,000β$32,000 USD for the full 4-session course. Mediclaim covered part of it. We covered the rest as a family β my brother and I both contributed. It was a stretch, but feasible.β
The treatment
βThe 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.β
βAfter each cycle, he'd be tired for 2β3 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.β
βMy 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 β we made it a game. It worked.β
The results
βHis 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.β
βThat 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.β
Caregiver lessons
βA few things I wish someone had told me earlier:β
βGet 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.β
βThe 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 β it's just the amino acid.β
βTreat 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.β
βCaregivers 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 β get help if you need it.β
