My husband was diagnosed with advanced PCA in October 2018 with extensive mets in virtually every bone and a PSA of 1360+. His PSA was 30 last month after six months of firmagon/eligard and zytiga. We are very thankful!
I have asked his MO if it is possible that while the PSA is still at a high level, would it be possible that the cancer is growing and she said it is very unlikely that it would be given that he is not CRPC and likely doesn’t have any neuroendocrine PC.
My husband has gone from taking occasional Alleve to needing dilaudid every 4 hours in the last 6-8 weeks. I believe through touch alone that his mets are getting larger although I concede that this might just be inflammation. They did a spinal CT recently and said that he had such extensive osseous disease when first images that they can’t tell if anything has changed, although they did recommend 5 sessions of radiation to 2 endplates that were deteriorating in his cervical and thoracic spine. The first CT also said there was nothing remarkable about his clavicles whereas this report said that he has multiple sclerotic metastases on the clavicles.
I know no one will want to give medical advice, but I am curious what your thoughts are about what the doctor said. Do you think it is possible that because his PSA is still decreasing on hormone treatment it is unlikely that the PCA would be spreading? Why might she not bother to look to see if he might have neuroendrocine PCA? If the PCA is not growing, why is he experiencing more pain than when he first started treatment? And finally, shouldn’t his CT have shown improvement to the bone mets?
I’m sorry for so many questions but I’ve done a lot of googling to try to answer these questions but haven’t gotten a lot of answers. I figure there is no bigger source of experience and knowledge to draw upon for answers than this group.
Thank you in advance for any perspective you might have.