Intro & about to start treatment

[duckcalldan]

Hi all. First post in this group (I am also on APC). I had a busy week meeting with MedOncs and RadOnc as I’m about ready to start treatment.

—my very high risk cT3b 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.

—my PSMA PET scan showed a suspected bone met on my skull frontal bone, but 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 darolutamide 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 and will hope that Bayer will approve me for free Nubeqa.

—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 am leaning towards Swedish and can always move over to FH if my MedOnc needs become more complex as my treatment progresses

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…

[CarverD]

Best of luck to you as you move forward with treatment. We are here for you.

[fast_eddie]

It is a shame you are short of the Medicare qualifying line while trying to battle this beast. I was lucky. I was diagnosed at age 66 but I still went out of pocket for an expensive surgery that wasn't covered by insurance. That was 8 years ago.

[Murk]

I wonder if the two facilities you are considering have experience working with your health provider and in getting things approved? I've also read that sometimes insurance companies will reconsider their decisions when pushed a second time by the health provider and patient.

I know my health facility knew how to work the Orgovyx insurance angle. They had me go to Onco360 for my first prescription which I got free. They do this so when you go to your insurance for the second 30 day batch, you are already on it so it was an angle to get approval.

Also wonder if Medicaid is an option since you have a couple of years before USA's Medicare.

[duckcalldan in reply to Murk]

Not worried about getting Orgovyx approved. Even if my insurance company denies coverage, I can get it directly from the manufacturer for free through their patient assistance program (but thanks for the Onco360 rec).

But I’m hoping I can figure an angle to get a SBRT boost approved. Although I can still get an IMRT boost to my node as part of my 28 fraction regimen, which will start the first of 2025.