Hi Churchie,
Really sorry to hear you're going through this. Neuroendocrine cases are tough, but there are options after your current carboplatin chemo, it shouldn’t just be “wait and see”.
To my knowledge, cabazitaxel + carboplatin (together) is often used for neuroendocrine / aggressive variant cases, and can be a common next step after carboplatin alone.
There are also drugs like Lurbinectedin, or Irinotecan / Topotecan (borrowed from small-cell lung cancer protocols). You don’t need to decide anything now, but it’s worth asking your oncologist about these so your team are thinking ahead and you’re not left in limbo after this first round.
The other thing which can make a real difference is full molecular profiling. Worth asking whether your tumour has been tested for:
BRCA1/2 and other DNA repair genes (DDR panel)
MSI (microsatellite instability)
TMB (tumour mutational burden)
PD-L1
The reason why I'm suggesting this is, if there’s a BRCA-type mutation, you may be eligible to have a PARP inhibitor (e.g. olaparib). If the tumour is MSI-high or TMB-high, then pembrolizumab (immunotherapy) is allowed regardless of where the cancer started. So the “wrong origin” explanation is not the whole story, the molecular profile actually matters more than the original site.
Also, it’s worth asking for a referral to a centre that runs neuroendocrine / small-cell trials. This is worth doing now rather than waiting three months. Trials for this subtype do exist, but they’re usually run in larger cancer centres, so you often need a referral.
Hope this is useful, and best of luck.
Edited by member 10 Nov 2025 at 23:32
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