SBRT journey continues

It's been awhile since we've posted. I think the last update was when insurance denied the SBRT back in late September. We battled with them, and so did the docs, and settled on a modified treatment plan of 6 treatments of basically SBRT that the Cleveland Clinic can bill as IMRT.

I admit that it was tough first going thru the cancer DX and then the battle with the insurance company. But we are finally thru it all and Steve's first treatment is scheduled for Monday, 11/23. He had a SpaceOAR (hydrogel) and the fiducials placed on 11/4. Had a few minor complications afterwards, so took awhile for the inflammation to settle down.

The Clinic sent us our SBRT plan yesterday. It's 7 pages and we really don't understand it. Just have faith that our RO and the physicist did the best possible plan.

I'll try to post more often as Steve goes thru treatment. First post-treatment PSA is scheduled at 5-6 weeks. They usually see an 80-90% drop in PSA, but Steve's is starting out pretty low at 2.20 with 16% free (as of October), so we've been told the drop may not be as dramatic.

Hope everyone is doing well. I'll try to read some of the most recent posts to catch up.

Suz and Steve

Post Edited (suzhtz) : 11/23/2015 5:21:39 PM (GMT-7)

Suz, glad to hear things are moving forward for you guys. And looking forward to a good report at the first PSA.
Good luck to Steve in Cleve!

Glad Steve's tx is moving ahead. Best of luck!

Thanks for the update. Really enjoyed meeting your guys in Rochester.

Hi all - Well, things did not go so great with the first SBRT session.
I'll back up a step to explain.

When Steve went in for the pre-planning simulation session, they did a scan both with and without the rectal balloon and felt they were better able to avoid organs at risk without the balloon (Steve had the SpaceOAR hydrogel implanted at the same time as the fiducials). So his radiation plan was developed without the balloon.

Today, they could not get things to align. His rectal curve was off and after two bathroom breaks and retries, they called off the treatment for today. They are going to develop a new plan around the scan with the balloon as it should allow for better alignment for the duration of the treatment. They reassured us that organs would still be well protected.

Our nerves are frayed and we feel like Murphys Law magnets. We are scheduled for our second try on Weds morning. Hope I have better news to report that afternoon.

Thx for your good wishes, thoughts and prayers.

Suz and Steve

FYI - as suggested, i sent our first plan to Tall Allen and he thought it was "excellent". Hope the next one is as impressive. (TA - Clinic uses the Varian Edge for SBRT.)

Post Edited (suzhtz) : 11/23/2015 5:22:20 PM (GMT-7)

That's nerve wracking to have to go through.

Here's hoping Wed goes better.

Sending good thoughts your way,
Andrew

In the short term it's frustrating to have to recalibrate.

But better to re-think than to implement a plan that could/would have causes unintended radiation.

Have a great Thanksgiving and looking forward to the day you join us in what Tall Allen refers to as the post Toasties.

I just crossed my one year SBRT anniversary and so far no adverse side effects.

It's kind of like when a plane is delayed due to mechanical issues. When they make the announcement you groan since you know you're going to be late. But you sure want to be safe rather than sorry. Still, I'm sorry you had to go through this, but you should soon be on your way. Good luck to you!

One of my IMRT sessions fell on the day before thanksgiving. I took the pop-up timer out of our turkey*, cut off the end and glued the resulting red and white plastic button to a small card which I stuck on my lower stomach where the technicians would see it as they lined me up. The card said

POP UP RADIOMETER 66.6 GRAY
Red button pops up when patient is done.

Good luck.

*For my money the pop-up thermometers don't pop until the bird is overdone. At 165 degrees the breast is starting to get tough.

Lee - That's hysterical! I bet they talk about that every Thanksgiving.

Steve is in the nuke room now. Fingers crossed that all is going well.

Just a wild guess - sciatica? From whatever position he was put in during the dp treatment?

FYI, the only problem I had with my HDR brachytherapy was severe pain in my back from spinal stenosis. The first go around I didn't have the right support and I was miserable. For the second treatment we planned better and I was fine. Good luck to the two of you!

Glad to hear the leg pain subsided, Sue.
Please send my best to Steve, I'll be glad for you guys when this is over and done.
And aHappy Thanksgiving to you guys too.