Decision Made & Scheduled

Hi all,

Wanted to post an update on my learning curve after completing my consults for treatment and making a decision, alleluia!

We had consults with proton therapy folks at Provision Care in Knoxville. They are just sticking their toe into finding a hypofractionated recipe and have a clinical trial going on for a 25 fractional (5 wk) treatment plan. Dr. Wilkinson spent more than an hour with me knowing beforehand that my BCBS of TN insurance did not cover any of the beam costs of over $45,000. I did not have that knowledge going in as the front office person I spoke with said my insurance was able to be "coded". Which I took to mean probably covered. It turns out there is a code that BCBS has for proton therapy but it is routinely denied. Only the doctor visits and lab costs not associated with beam treatment was covered. The cost of each treatment was around $1800. Dr. Wilkinson did not spend a lot of time on proton therapy, but really went into a lot of depth on the best options being HDRBT and SBRT and what to look for a each facility. A lot of his answers where right inline with TA's. Can not say enough about the quality of information that is available on this forum!

Next I visited Vanderbilt to see what they are doing. Turns out they are just now getting back to doing SBRT after discontinuing SBRT at the Vanderbilt-Ingram Cancer Center shortily after Dr. Timmerman at UTSW published their SBRT ramp results. They are now just starting back doing a clinical Phase II evaluating SpaceOar that I could sign up for. Based on the results they would start back up with SBRT therapy. They mostly do LDR seeds for low risk/intermediate patients. They have a Novalis TX Linac but don't use it for prostate treatment. They use their Novalis stx Truemark for prostate treatments without x-ray tracking. Vanderbilt believes the studies that show that the prostate does not "significantly" move during the short 10 minutes of treatment time. This did not sit well with me based on my other readings of how important intra-treatment tracking is. My other potential option was cyberknife with Dr. Jim Gray also in Nashville, and he was highly recommended to me both by Dr. Wilkinson and my GP doc. But he would likely have to get creative w/ coding or do an appeal to get it covered by BCBS of TN since they still have SBRT as not medically necessary for prostate cancer. I think I probably could get it ultimately approved.

Lastly, did a telephone consult with Dr. King in Santa Monica. Can't say enough to endorse what others have said about his personal caring nature. He has also returned my calls answering follow-on questions and spent as much time as I needed to understand how everything would go. I felt very comfortable making the decision to go there. 1st appointment to set the gold markers and do the simulation is scheduled for Feb 12th. Then have a week off to do some site seeing and start the 1st treatment the following Tuesday. Can't say enough how humbling it feels to have a doctor of his caliber doing my treatments. Mush relieved......

Sponge

Sponge, good job on your analysis/assessment and good luck on your treatment. You are in great hands.

Jim

Well reasoned and thought out. I'm sure everything will go well!

Obviously, I share your adoration for Dr. King. I think Vanderbilt is treading dangerous waters by skipping intrafractional tracking.

Hi Gari-

Got the 1st 2 nights near the UCLA campus in the Hilgard House as the Triverton did not have availability for those nights. They are only a couple blocks from each other and both offer discounts to patients receiving treatment at the UCLA medical center. The Triverton House gives a larger discount and can stay for around $130/night. Will have the urologist putting in the fiducials the first day there.

For the days that I am receiving treatment, will locate closer to Santa Monica where the actual SBRT treatments are done and walking distance to the pier and the town center. Found several good options for signal bedroom/kitchen on Air BnB and VRBO starting around $160/night in the off season.

Sponge,

Fantastic! It's a great feeling once the plans are set and you're comfortable with them. If you're anything like me, you'll be pleasantly surprised with the ease of the treatments and your ability to wander on out and play vacation like nothing happened. Not so much on the Fiducials if not taking the edge off. But that issue is pretty short lived. I'm blessed to have had the means to fly out there for treatment. Dr King has a great team. I hope you find the same. Keep us posted.

Frosty

Sponge! Good luck and godspeed brother. May your procedures be quick and painless and your recovery be short without incident! Research is one of the keys to success in fighting this disease! Dave

Chris King does do both primary and salvage IMRT on a regular basis.