Is a PSMA PET SCAN the next step

This is an interesting discussion for me, and I'm so sorry about all the financial nightmares.

I asked my new radiation oncologist in June about a PSMA PET scan. He said OK, if I want, but he doesn't think it's really necessary at this point (PSA < 0.01, all bloodwork good, stable for almost 3 years).

I'm going with that for now — there's no point being overscanned, especially if I'm going to be around for many more years, as I fully plan to 🙂 — but I'm also keeping my ears open in case best-practice recommendations change.

(Here in Ontario, my RO has no incentive to steer me towards or away from a scan. Hospitals don't get paid per scan — the machines don't have to generate a profit like in the U.S. — and there's no insurance claims involved.)

Hey Ken, as you can see we're all pulling for you in whatever way we can. I'm lucky to have a friend who is really well versed in Medicare in all its forms. So I copied your initial post and sent it to him (anonymously of you of course). I'll paste his reply below and if the site permits it I'll include the two attached .pdf's he sent.
One thought that came to me as I read his note; he used the phrase "Extra prostatic extension". Sure, that's the same as what you said but just a word's worth of difference. You might try same meaning words that are slightly different since your appeals are going to mostly laymen, not real doctors (I suspect). Just my untrained thought.
Dave's response below:

There are some important questions that would help to clarify your friend's situation that I've listed below. However, although I'm certainly not a doctor, but it seems quite odd that a PET scan would be disallowed for Extra prostatic extension of the prostate.

General Information

Medicare Advantage (MA) plans can make medical necessity determinations, but the if an MA member disagrees with the determination they can appeal the decision that can eventually reach Medicare.

I'm attaching two excerpts of the Medicare website, which give you a more detailed description of the Medicare Appeals process. Ken, we'll do this on a one to one basis. I found a way to send you a private message 🙂

Please note that the second level of appeal is a review by an independent party and the fifth level of appeal is with a Federal judge.

Since the Federal website is interactive, below is the Medicare Appeal link so that you can further explore the issue.
https://www.medicare.gov/claims-appeals/how-do-i-file-an-appeal#:~:text=An%20appeal%20is%20the%20action%20you%20can
Questions

1) Is the MA plan denying any further diagnostic procedures?
2) Is the MA plan allowing some diagnostic procedure, but not the procedure that you want?
3) Have you already filed a Medicare appeal?
4) If so, what is the current status of the appeal?

Please let me know if you have any questions.

Ken, Keep punching with all you've got!
Good luck Buddy!!

WOW, great information and instructions that are right on target. Can’t thank you enough for the time and effort you put in to help me out. And your friend Dave really is on top of the process. I got a call this afternoon (8/13) from Blue Cross Advantage plan and was told my appeal has been resubmitted to the “grievance” committee for further review. I tried to stay as calm as possible but let her know just how upset I am with this ridiculous situation. Even reading on-line that Medicare now pays for a PSMA PET SCAN. She said I should get an answer in the mail “soon”. I told her to call me as I’ve been waiting about 7 weeks already. If I don’t get the approval I have saved all the information you and Dave provided and will take immediate action. Your support is heartwarming and greatly appreciated. I will let you know the minute I get the decision from Blue Cross. Fingers crossed. All the best to you and thanks again.
Ken

@kenporter
There is big differeence between Medicare and Medicare Advantage. Medicare Advantage is NOT Medicare but a private insurance plan in lieu of original Medicare.

Medicare does cover PSMA. I had mine covered and many others will tell you the same. A Medicare Advantage plan is going to have their own rules and policies especially which provider you can see and what test.

If they are going to stick to what Medicare policy is contact Medicare and asked if they cover PSMA. Then send that information to your Medicare Advantage. I think but just my opinion your Medicare Advantage Plan is trying not to pay for your PSMA as is NOT the policy of Medicare. Now Medicare does require you get services from an institution or provider that takes Medicare.

Went thru the exact same thing before I was on Medicare. BC/BS are the absolute WORST and said the scan has not been shown to ‘statistically’ change outcomes - COVERAGE DENIED.
But it was MY life on the line so I just paid for it - like $7500 or so.
My MRI did not show all that yours did, except to say that there was a mass inside the gland - no extracapsular/seminal vescicle involvement. And still I am in the middle of salvage therapy 5 yrs later after surgery.
It’s just my humble opinion but you really should have the PSMA even if you have to borrow the $$ or take a home equity loan.
Your DRS really need to see what’s going on in order to perform the proper treatment. The $$ you spend now is truly an investment in the rest of your life. Best of luck!

Hello again Ken, I see you're still getting lots of good advice and comments.
I had another note from my friend, Dave. It seems to deal with what I call "magic words". Words the phone jockeys seem to understand and react to. Also the words those same phone trolls use against you. So note the words "grievance" and "appeal" Dave references, below:

"Although I think that Ken stands a very good chance of getting the PET scan approved, I wanted to point out that "that there is big difference between a “grievance” and an “appeal” in the Medicare world.

"A grievance is filed for provider issues such as the inability to get appointments or having a dirty office.

"An appeal is for a claim or predetermination rejection. I think that Ken’s situation falls clearly in the appeal "process.

"So if the grievance committee of the BCBS MA plan continues still rejects the PET scan, Ken’s strategy of "immediately going to the appeal process is a good one in my opinion.

"Please let me know if you have any questions."

tehill, thanks for the reply. I think you are 100% correct. The “Advantage” plan is the problem. I expect to get another decision “soon” and if still denied I’ll contact Medicare directly. I have received some great help and advice from the group here. Really happy I got connected. Thank You, Ken

grandpun, thanks for the additional information. Thanks to Dave as well. The minute I hear from BCBS with their “decision” I’ll let everyone here know. And fingers crossed to get good news. Thanks again, Ken

Hello heavyphil, thanks for your input and I sure hope you are doing well and feeling good. You are right on target about the BCBS Advantage plan. When I had Bladder cancer (5 year battle started 2008) I had Medicare and a Medicare Supplement Plan. Never had an issue with any procedure, surgery or chemo. I think the cost exceeded $300,000. I was cancer free for 11 years until prostate cancer arrived in May. I just read that anyone having bladder cancer has a 70% chance of getting prostate cancer. Oh, I also read that if your life expectancy is less than 10 years they basically don’t want to pay for treatment. I’ll be 79 this month but I’m no where near ready call it quits. Thanks again, Ken

I found on the internet that Medicare does cover the PSMA PET SCAN. You are correct that the advantage plan just doesn’t want to pay. I should get their “new” decision soon and if it’s not approved I will go directly to Medicare. They way I understand it is that the Advantage Plans have to follow Medicare guidelines. I will let all the good people here know what the decision is as soon as hear. Thank You, Ken