How to cope with the uncertainty after last PRRT? Scanxiety

Posted by susan481 @susan481, Feb 7 4:51am

Anyone have advice on coping with the uncertainty after the last PRRT for the months before a scan to assess its effectiveness? (Stage 4, grade 2 PNET)

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zacharycat | @zacharycat | Feb 7 8:51am

After my last prrt (11/24) I was only getting lanreotide monthly. Felt great, better than before diagnosis or since. Was worried though about prognosis without prrt. The oncologist said he expected more reduction in tumor mass, which CT scans showed. Nevertheless about 6 months later symptoms recurred and I was hospitalized until surgery (distal pancreatectomy and spleen and gall bladder removed). Now taking cabometyx.
Others go years without disease progression so tumor grade means quite a bit. I have well differentiated grade 3.

vinnie694 | @vinnie694 | Feb 7 11:30am

Waiting is always the worst part! That's why my team did a scan after 2 treatments, this validated the treatments were working, due to no new tumors, no growth and some were reducing.. With that said I had hope that with the next 2 treatments that trend would continue....And it did..