Rare Prostate Cancer
Just received the dreaded news today that my husband has a rare form of aggressive prostate cancer with "unusual spread". Our current doctor (not Mayo Clinic) said this is the first time he has ever seen this and has consulted with colleagues who have only seen it twice. It has spread to his lymph nodes (doctor says the lymph nodes are "very enlarged") and there is substantial swelling in his abdomen, which is supposedly what makes this so rare. They are recommending a new scan ($65,000 without insurance) to get a better understanding of what is going on, but waiting for insurance clearance which will delay starting treatment at least one week. They said we can't start treatment until after the scan because hormone shots may impact the scan results. PSA number has went from 20 to 40 to 60 very quickly.
A few lingering questions — do we try to get a referral to Mayo or somewhere else since our current doctor and his colleagues have limited to no experience with this rare form of prostate cancer? Do we forego the scan and immediately start hormone treatment? We know time is of the essence, but are unclear exactly what that means. Has anyone else experienced this or are we the only ones?
I understand this is a discussion forum and nothing should precede doctor recommendations and ultimately our family will need to make these decisions. Just looking for advice or recommendations from those who have been there.