Great news! It is NOT Recurrence!!

Good news! I posted earlier this week that my husband's PSA had increased slightly from .2 to .4 in three months and Urologist at UTSW wanted to start Lupron and ordered PET Scan. (Note: My husband did not have a radical prostatectomy for his treatment. He had External Beam Radiation Therapy). Thanks to advice here, we scheduled another PSA test and met with a Radiation Oncologist at UTSW. The retest PSA today was .2 -- back to where it's been for few years.

He confirmed what you told me here. In fact he said it's likely he's had a full cure since it's been five years after Radiation with no issues. He went over the ASTRO definition. After Radiation Therapy, It's not a BCR unless it's nadir plus 2, so no idea why the URO freaked out, but he will no longer be a part of my husband's medical care.

The RO was very professional, but smirking a bit that the URO was ready to inject him with Lupron when it clearly wasn't warranted. Later, the nurse came in and said a group of Radiation Oncologists were actually looking at my husband's chart and shaking their heads.

The RO has agreed to provide all follow-up care going forward so no reason to return to URO unless there is a specific URO concern (other than PCA).

A few learnings:
1. Always have your PSA checked at the same lab (or make sure they use the same ASSAY).
2. UROs are used to seeing PSA results following prostatectomy that are not as low as levels after RT. So consider using a RO for follow-up care and PSA tests.
3. You typically must have a PSA over 1.0 for the AXUMIN PET scan to even detect anything. So that would have been a waste of $2500.

For those of you in DFW area, I can wholeheartedly recommend the professional care we received at UTSW Radiation Oncology center. They treated us like we were at a five-star hotel.

Great news and wild story! Happy for you guys!
Bill

YAY!!!

note the use of the max of three ! in one line as per federal regulations...

Wonderful news!
Have a celebratory weekend.
All the best.

Ken

Thanks for all the great comments. It's been a stressful couple of weeks for sure. We will celebrate tonight at a Fund Raiser trivia contest. (If there are Qs about nadir, BCR, Axumin scan we'll win).

Pax - you are lucky to find a team of URO and RO that work together. In our case, it doesn't feel that way. I almost wonder if there's a rivalry between the groups. The Radiation Oncology group just moved into a stunning new building filled with light and artwork. They are getting all of the press because people love to hear about the amazing new technologies in Radiation Oncology. Meanwhile, the Urologists continue to slug it out in a dated, crowded building and huge patient loads.

When we arrived yesterday, we rode the elevator with a distinguished looking man who greeted us warmly. We noted his name tag and looked it up later. It was the Chairman of UTSW Radiation Oncology Department Hak Choy. He's the leader responsible for the new building and the updated technology. He still took time to ask us "what floor?" and push the button. I'm sold!

As a side note, one of the leaflets in the packet we received is entitled, "Speak Up" and is something we all need to remember. Pay attention, do your own research, ask questions and if something doesn't seem right -- SPEAK UP!

Tall Allen - your comments this week sent us on the right path to look for a RO. I'm grateful. We received a message from the URO's nurse yesterday (while were meeting with RO) that hubby's PSA had dropped to .2 and she would consult with URO Monday and call to let us know whether we need the PET. (No way in hell).

Not sure about reporting him... Or who we would report to. He's a gifted surgeon. People come from all over the US because he performs reconstructive urologic surgeries that many cannot. So he's performing a service to those patients. Five years ago, he was genuinely shocked when we opted for RT vs. surgery, because he assumed that's why we chose him to be our URO. So not a great fit in the first place.

When he over-reacted to the PSA bounce, I wondered if he was thinking, "See you should have let me do the Prostatectomy." or did he forget he hadn't done it or what. Very strange circumstances.

I was thinking that your RO could report him to the hospital disciplinary board. Just wishful thinking on my part - doctors seldom do that sort of thing to their peers.