Stage IV, G9, cervical lymph mets with radiation, protein abnormality, genetic testing

Hello everyone! I didn't know what to title this, so I just included some things that have been going on. We haven't been on here in a while as things had been going great. But, everything got turned upside down. I wanted to get back on and share Will's updates. And to gather any wisdom that may help us.

Will's background should be in my signature. He had been doing very well for most of 2023. He tolerated chemo well, had hardly any side effects beyond being tired. He started Zytiga and his PSA dropped to .03, where it is right now. He raced cars all summer, did a mountain bike race, did a 55 mile bike ride, went cross country skiing, etc. In October, he got a cold and developed some dental issues. He had some dental surgery, which never healed and he ended up in the hospital for a week. They had no clue what was going on. It was debated to be either osteomyelitis or cancer. The biopsy came back as cancer. He was treated for osteomyelitis (as they thought it could be both) with daily IV antibiotics for almost 2 months. It did not work. He had a surgical biopsy to determine what kind of cancer this was. As many of you probably know, prostate cancer in this area is rare. This biopsy came back as inconclusive. They sent it off to MD Anderson. Again, inconclusive. During this time, the tumors got much worse and Will was started on a 6 week course of radiation. He is 3 weeks through it. His genetic testing came back... "Caris testing from 02/14/2024 showed genomic loss of heterozygosity, high, TMPRSS2 pathogenic fusion, TP53, pathogenic variant EXON10." We switched insurance (very annoyingly in the middle of his hospital stay) and have a great care team. His prostate oncologist is considering immunotherapy after radiation as chemo apparently does not respond to this. We are considering a second opinion with Dr. Kwon as we have seen him before. I'll be searching this forum for any information. I saw a recent article on genetic testing. I think we have a rather unusual case. But, any thoughts or advice?

Hey there Mumbo, thanks for the reply. Sorry, it was a lymph node biopsy. He initially had a needle biopsy, which was inconclusive as to type of cancer. They then did a surgical biopsy. They didn't want to do a jaw biopsy unless they really saw a need. He has had many scans done over the past few months and everyone says the jaw looks healthy at this point, but cannot be 100% certain (as I understand it). His genetic testing was from Caris. And I believe they are going to send his biopsy out to them for a 3rd opinion on what kind of cancer this is. His prostate doc now thinks it is prostate. We also see head and neck cancer specialists now and they feel like it is not a squamous cell or oral cancer. That's a good idea to reach out to Caris. I'll look into it. His prostate doc admittedly does not know what to do right now. He has several more weeks of radiation, but then we'll need to look into some other treatment. I know many folks on here use PSA as a marker. And for most everyone, that's likely a decent marker. But, PSA (public service announcement), Will's PSA never went up and has been around .03 throughout this entire ordeal! And as I said, they do believe it is prostate cancer. He is definitely a strange case. We're not giving up though! The radiation is working!