More guidance needed again

I posted several weeks ago looking for advice as surgery in mid-February failed my husband and his first post-op PSA was.86 in late May. Tall Allen suggested we see a radiation oncologist. We were scheduled to meet with the RO on my husband's surgeon's team at Hopkins in late June. In early June my husband had a 3t MP MRI locally which suggested <4mm lymph node involvement in two spots, one above the navel and one near the sacrum.

We met with the RO at Hopkins in late June, and at the same time Dr. Ross (surgeon) scheduled my husband for a nuclear bone scan. The RO recommended 8 weeks of pelvic radiation along with ADT. We went home and Dr. Ross called with the bone scan results the next evening - two areas suspicious for mets, one on spine and one on rib - both had been broken in a car accident decades ago. The RO called the next day and said he still recommended pelvic radiation and then spot radiation to the bone mets. He was kind to call as he knew my husband would not be having radiation at Hopkins.

Dr. Ross then arranged for my husband to take part in a trial and return to Hopkins the next week for a PSMA Imaging with 18F-DCFPyL PET/CT. Those results showed micrometastases in the bones - two in the spine, one to the rib and one on the side of the skull, in addition to the two lesions previously seen on the bone scan. Also what appears to be a lipoma in the thigh (he has had many of these over the years in his neck, etc).

There is currently no soft tissue involvement, including pelvic lymph nodes, according to the test, which is consistent with his surgical pathology (clear margins, SV, and 54 clear lymph nodes). The Hopkins team suggested ADT and possible spot radiation to the bone mets, MRI for the thigh. They strongly recommended NO radiation to the pelvic area at this time as it might cause more harm than good.

My husband had already been in touch with Dattoli Cancer Center as he liked what he read about them and their research/methods, talked to men who had been treated there including one who failed three years later and was treated in Switzerland (he still recommended starting with Dattoli), he really liked the doctor he spoke with who will be treating him, and he preferred to be near the beach if he was going to need 8-9 weeks of treatment. He went to SandLake Imaging last week for more scans and we are scheduled to meet at Dattoli next week to review his scans and their suggestions for treatment. He has already started Casodex and Proscar and will have a six month Lupron shot at Dattoli. My husband was 99+% continent until he started the ADT three weeks ago. Now 90% a day and not happy. I believe they are adding other medications. Metformin and Avodart were mentioned as well as an estrogen patch. The dr. he is meeting with cautioned him that they would review all of his scans and proceed from there.

We were quite shaken by the news of the bone mets, as we thought his persistent PSA was due to lymph node involvement per the 3t MP MRI test results. In that scenario radiation made sense. I am guessing the bone mets are a game changer, though radiation still may have benefit. I am second guessing what we should be doing and wondering if we should be doing more/is this the right course of treatment? What should we be doing/asking? Should he ask about starting chemo now per CHAARTED and STAMPEDE? I'd appreciate any thoughts/advice. Thank you, Chris (& Dave)

We had hoped to radiate the six bone mets. Can you recommend a med onc my husband should see who treats prostate cancer only? He is willing and able to travel. Or the trial that would offer the best hope? I am really tired of researching in one direction only to find it was useless because the disease is going sideways from what we've been told. Thank you.

Post Edited (chrisp1) : 8/4/2016 7:37:32 PM (GMT-6)

Dr. Ross mentioned Dr. Antonarakis at one point but somehow that went by the wayside in lieu of the RO. I will have Dave call Dr. Ross to see about an appointment with Dr. A tomorrow. Dave still wants to go to Dattoli next week. I am fine with that as you have now given me our next step. I will get a week's vacation in Sarasota and get to see my dad in Jupiter - I haven't been able to see him since we lost my mom 3 weeks before Dave was diagnosed. I so appreciate your help. You are on my permanent prayer list.

Thank you. My husband will email Dr. Ross tomorrow as he would like to be considered for that trial. Dr. Ross has been amazing in his response every time my husband has reached out to him. We live in TN but both our adult kids are in DC within an hour of Hopkins. Thanks you also for your sympathy. I miss my mom, she was an amazing support in times of crises. Thankfully, she taught me well.

ASAdvocate, I agree with you 100% about Dr. Ross and his incredible knowledge and skill. More importantly, so does my husband. He has already been in touch with Dr. Ross this morning and the doctor's immediate response and advice have reassured my husband. My husband is hoping to speak with Dr. Antonarakis in the near future also.