Update

I wanted to update, as many of you have been so helpful. We went to Florida to meet with the radiation oncologist at Dattoli two weeks ago. The Sand Lake scans showed two suspicious lymph nodes in the pelvic area and no evidence of bone mets, opposite of findings at Johns Hopkins. Dattoli has the scans from Hopkins for comparison. Their opinion was that the spots on the bone scan are consistent with broken/cracked bones from a car accident years ago. His spine and joints are also full of arthritis. The PET/PSMA trial test scan was sent to Dattoli in a side-by-side format rather than an overlay of the scans. The RO had been trying to get in touch with Hopkins to talk with the doctor in charge of the trial to better clarify the scans as he questions some of the readings.

My husband requested a call from a med/onc at Hopkins to make an appointment for advice/treatment before we went to FL as Tall Allen suggested, but did not receive a call back. He decided to go ahead with radiation in light of the pelvic lymph node involvement. The RO at Hopkins had initially recommended pelvic radiation and added SBRT when their scan showed bone mets. I think my husband was concerned that if he did not do radiation, his treatment would yet again be delayed as he would have to find a new MO. He is already three months out from knowing the surgery failed and his PSA was increasing quickly from .86 to 1.9 at last test. He started taking Casodex and Proscar after all scans were completed and has received a shot of Trelstar. He is also taking other meds prescribed by his RO. We are not sure what to think given all the conflicting reports/scans. Now that my husband has started this treatment, we are hoping for a positive outcome, though we are aware of the statistics. We appreciate your support.

Thank you and I agree with you as far as my limited knowledge goes. It seemed to fall apart for us at Hopkins after my husband met with the RO after surgery failed him, the bone scans came back after that meeting with two mets, the surgeon got my husband into the PET/PSMA trial, and other than a call saying "micro bone mets" "no pelvic radiation" "SBRT to all the micro mets" we were on our own. The surgeon assumed my husband would have radiation at Hopkins, and my husband probably would have if the RO was at all encouraging as my husband typically takes the path of least resistance. After you suggested we needed a med/onc my husband emailed his surgeon to see if he could get an appointment with the med/onc on his team. The surgeon said he thought he could ask a favor and would ask the med/onc to call. He did not call so my husband pressed forward with Dattoli. He really likes them and feels confident they know what they are doing as far as radiation and meds go. They seem to follow the Snuffy Myers protocol. My husband called Dr. Myers' office back in May when surgery failed but he is no longer taking new patients according to the woman my husband spoke with. I have been pushing for taxotere since surgery failed. My husband and his surgeon said " not at this time." Interestingly, Dr. Kaminski who is treating him at Dattoli, seems more willing to consider it at some point. Thank you for your guidance and believe me, I will be pressing your response with my husband when he calls tomorrow. I am home working and missing him greatly.

No, my husband has not called directly yet. He didn't want to step on any toes and the timeframe was very tight. I spoke with him this morning and he said he was going to finish what he is doing now as he can only focus on one thing at a time anymore.

He spent yesterday afternoon in the ER as he felt what he thought was a bug sting but when he looked down it was a clot and his vein was swollen. He was pretty sure it was not related to his PCa or the meds he is on. It turns out it was a random small vein issue and he was tested for deep vein and clotting problems and he is fine. They suggested that he break up his exercise, especially his walking. He is an early riser and has been walking the beach for about an hour every morning, then running errands and going back to the apartment and following up with weight bearing exercises. Thank you for your comments - they are very helpful.

A trip to the ER isn't fun. Glad to hear it was easily taken care of.

Andrew

I think it was on his calf. I will mention the compression stockings, that's a good idea. Thank you, Peter.

Andrew, you are right. It was not fun. But he's seemed fine every time I talked to him today. He is trying to get more movement in during the afternoon. At home he is busy all day moving around, up and down stairs. He has been resting more since he has no yard or housework to do while in Sarasota.

We had no problem getting set up with the surgeon at Hopkins - we found them very quick to respond. And the overall staff is wonderful - if you even look like you're lost someone will stop and either give you directions or walk you to where you need to be themselves.

My guess is the issue may be that my husband did not want to do 8 weeks of radiation in Baltimore, though he might have considered it after the bone scan came back showing mets. Maybe his going to FL disrupted their normal treatment plan. I think he's more confident in getting the radiation in FL as he talked to some men who had been treated there and prostate cancer is their focus. He had already set that in motion when it was clear surgery failed. He definitely prefers being near the beach.

We were in such a tight timeframe while he was trying to talk with the med/onc that when we didn't get a call he let it go and figured he would follow up afterward. If he had pursued calling I'm sure he would have gotten a response at some point, but he did not.

My intent was not to throw Hopkins under the bus at all and I'm sorry if it came off that way. We think they have done a wonderful job getting him tested, etc. We have the highest regard for his surgeon - he's a brilliant surgeon and very compassionate and responsive.

Chris