Nearly ready to start treatment (an update)

[duckcalldan]

Hi all. Update after a busy week meeting with MedOncs and RadOnc:

—my very high risk PCa is now regional n1 with a 7mm pelvic sidewall node lesion (SUV 3.5) Because I’m not on Medicare, “it’s a coin flip” per my RO whether my insurance will cover the planned SBRT boost, since it’s not NCCN standard of care. Without this, I’ll have 5.5 weeks of IMRT as my only RT. No brachy option either.

—the suspected bone met (on my skull frontal bone, not hip) was ruled unlikely by both med teams. MRI shows activity as black rather than white, which would rule out malignancy. Might need further imaging in ≈3 months to confirm.

—ADT will start in a week or two, probably lasting 24 months at a minimum. I’m opting for Orgovyx with abitaterone + prednisone. Although I would prefer darilutamide as my adrenal blocker, it would be challenging to get this approved without taking docetaxel. I would likely be eligible for financial assistance from the drug makers.

—Still deciding on Fred Hutch vs Swedish. Good people at both facilities, but without having access to CyberKnife at Swedish is certainly a factor. Both MedOncs (Zhao at Swedish, Sunkara at FH who came over from Dana Farber) are solid and get high marks.

I’m feeling pretty bummed TBH. The fact that this is likely to be a chronic disease that I’ll be battling from here on rather than dealing with a curative situation is sinking in. I really want to be aggressive as I am fit and healthy, but without my planned SBRT boost it’s hard to be confident as I’d like.

Thanks for letting me vent…

[ELOfan]

Duck, If you and your Oncologist want a SBRT-boost and its not covered by insurance, what are your options? Could you ask both facilities for a cost ESTIMATE for self-pay $ and whether they would give you a monthly interest free payment plan? Or a online fund-me request?

I've been on ADT for a month now and 21 days of Casodex then over to generic-Zytiga + prednisone. My pain is gone and PSa dropped from 56.6 to only 3, resting plulse normal again... Like you I've otherwise been very healthy, so its a shock to learn I have this chronic/lethal condition. I start chemo Oct 23rd cause my bloodwork delayed the Oct 3rd chemo to Oct 23rd.

[duckcalldan in reply to ELOfan]

Washington state has a very generous charity care law, which applies to all WA hospitals. If your income is less than 300% of FPL (under $61K for a 2 person family), there are no out of pocket hospital and physician expenses. You do have to apply for financial assistance, but it appears that we would qualify. I will meet with a Swedish financial counselor to see if the law would apply to CyberKnife RT therapy. At any rate, my RT won’t start until the first of 2025.

Best of luck with your chemo.

[Tall_Allen]

Insurance will cover whole pelvic IMRT with focal boosts to areas of known cancer. NCCN writes:

"The randomized phase 3 FLAME trial showed that a focal radiation boost to the mpMRI-visible lesion can improve biochemical DFS in this population."

ascopubs.org/doi/full/10.12...

Brachy Boost is also advocated by NCCN based on the ASCENDE-RT trial.

If your insurance says no, appeal.

[duckcalldan in reply to Tall_Allen]

Allen, there’s not an issue with my insurance covering pelvic IMRT, with a focal boost. The question is approving a SBRT boost, which my N1 staging makes me ineligible for per NCCN guidelines.

Thanks for the note on brachy and the ASCENDE-RT trial. I will work on that.