Radiation Recommended Over Surgery

Just a quick update to let you know how my consultations went at Mayo Clinic Jacksonville this week.

Yesterday (December 17) I spoke with Dr. Sanjay Bagaria (surgical oncologist).  His summary notes are below:

I explained that resection of the mass posterior to the right kidney is possible.  However, there would be considerable risk to his right kidney.  The patient has underlying Chronic Kidney Disease (CKD) and therefore the risks likely outweigh the benefits.

Though I'm somewhat surprised as to the apparent complexity of such an operation, I give him credit for at least hearing me when I said "Don't put me on dialysis, doc!"

Today (December 18) I spoke with Dr. Michael Rutenberg (radiation oncologist), who offered up the following radiation treatment options:

1. Stereotactic Body Radiation Therapy (SBRT) -- This is what MSK was offering to do years ago, though they later indicated that getting proton radiation treatment at Emory in Atlanta would be a better option for me.  The downside of this type of radiation is that it uses X-Ray radiation, which causes more "radiation splash" since the beam continues to release radiation energy beyond the target, along the entire path through the body.
2. Proton Therapy -- This is what I had done 2 years ago for my pelvic tumor at Emory in Atlanta.  This type of radiation is thought to be safer for the surrounding organs (namely my right kidney) because it stops releasing radiation energy at the target.  The downside of this radiation is that it practically takes an act of congress to get it approved!  Can I be twice lucky?

With either choice, there is still at least some risk to my right kidney.  At the same time, there is also risk if I do nothing.  Therefore, my first choice (my only choice?) is to go with Proton Therapy.

And now for the "funny" part: I'll likely end up going back to the Emory Proton Therapy Center in Atlanta to get treatment.  Why Atlanta?  Don't they have proton therapy elsewhere in Florida?  Well, Mayo Jacksonville is currently building a Proton Center, but I'm about 1 1/2 years too early for that.  Also in Jacksonville is UF Health, which has a Proton Therapy Institute.  Unfortunately, however, they are "out of network" with United Healthcare (UHC) after recent contract negations failed.  This set of circumstances effectively leaves Emory as my only viable option for proton therapy.  I for one was very happy with the results of my treatment 2 years ago, so I'm sure they would do a great job with this new tumor too.  It's fortunate for me that Myxoid Liposarcomas respond well to radiation treatment as not all sarcoma types do.

Dr Mark McDonald, Medical Director, Emory Proton Center Atlanta

In summary, all I want for Christmas is Proton Therapy!  (But I actually don't want to start it until sometime early next year.)  Please say a prayer that the folks over at UHC agree that this approach is worth the extra cost over SBRT!