Round Two of the Prostate Battle - Need some advice

Hello All,

The beast has reared its ugly head after prostate removal.

Some info

I was originally diagnosed at 50 years old. Gleason 6. PSA 4.5 Dre negative.
I had two opinions on my scans both said Gleason 6

I had Robot assisted prostectomy

The doctor upgraded me to a Gleason 7 3+4 . Not because he found any 4 but because I had extracapsular extension and a focal positive margin. I don't understand that but, OK

Nodes negative, seminal vessicles negative.
3 month PSA was undetectable and 6 month undetectable, After a year it started going up. It is now hit the threshold at .2 for salvage.

My question is are there any scans that will pick up anything? I called Mayo and they won't give the PET choline until PSA is 1.3

Also is proton therapy an option?

I really feel lost . The urologist at University of Chicago just dumped me to find another doctor.

Big proton center in the western suburbs in Warrenville, now branded by NW but is at Central Dupage Hospital. They are marketing driven so confirm you are a candidate for proton before sitting down with them.

What do you mean UC dumped you?

Nick

You need to talk to a RO, radiation oncologist. I don't hear proton being used for salvage, some also report problems getting insurance companies to pay for it..

Mostly ROs do IMRT for salvage. Lots of places can do that.

Andrew

sorry to hear you're dealing w/this & sorry to jump into your thread, but i have a question about this as well. everyone is telling you to look for an RO at this point, but what about a medical oncologist? when does an oncologist take over? when/if radiation fails?

this is all very confusing.

Skylark-

I agree that it is necessary to see a radiation oncologist ASAP.

Skylark said...
The doctor upgraded me to a Gleason 7 3+4 . Not because he found any 4 but because I had extracapsular extension and a focal positive margin. I don't understand that but, OK

No one could understand that. Only your pathology report can tell you the Gleason score of the whole prostate. It is important to keep copies of everything. I keep it all on my computer so I can easily forward them to every doctor I see.

Skylark said...
My question is are there any scans that will pick up anything? I called Mayo and they won't give the PET choline until PSA is 1.3

The odds of picking up anything with a PSA of only 0.2 is very small. The best PET scans don't pick up tumors smaller than 4 mm, and those do not put out a lot of PSA. But you have an advantage, paradoxically, because of your focal positive margins. It's a near certain guess that the cancer is in the prostate bed. That's where they aim the salvage radiation.

pwallace said...
everyone is telling you to look for an RO at this point, but what about a medical oncologist? when does an oncologist take over? when/if radiation fails?

That's correct. When curative options are exhausted, one wants a specialist in medicines to control the cancer. An MO is not an expert in any kind of potentially curative salvage therapy, and might just be in the way. I know this is unlike how other cancers are dealt with, which is why this may be confusing.

Tall Allen - thanks for your advice. Very helpful. How long do you think I have before radiation should start? Nervous about finding a doctor . Also have you heard about proton therapy for salvage?

Nick 2017 I think I will call one of those doctors you mentioned. UofC is a good hospital.

As far as why they didn't refer us to one of their doctors I have no idea. Maybe because we are over an hour away and radiation is everyday?

Regarding proton therapy. There is no evidence that it is in any way better than IMRT and is much more expensive. Doubtful that your insurance will cover it. Stay with the tried and true IMRT delivered by an excellent clinic that does a lot of prostate work.

As TA says there is no need for a medical oncologist at this point. Get a good radiation oncologist and you will probably never need a medical oncologist.

The contact for Univ of Chicago RO is

sliauw@radonc.uchicago.edu

I am getting ready with this info in case I would need it but glad to share

I have a friend that is being treated there for colon cancer. He's getting chemotherapy there and is doing well. He said he's happy with Northwestern/Delnor and is glad he's there.

I also have another friend that posts on another forum (was actually the one that told us about the UofC) that had his ART at the UofC in New Lenox with Dr. McCall.

That's how I knew about it. He's now at Loyola due to insurance reasons but did complete his radiation at UofC long before he had to make the change to Loyola.

I think TA recommends Dr. Moran for radiation in our area but I really don't know if he does SRT.

He is at the Chicago Prostate Cancer Center in Westmont but I THINK he does brachytherapy.