Trying to decide between Axumin or PS... - Advanced Prostate...

Advanced Prostate Cancer

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Trying to decide between Axumin or PSMA Scan

sandy4510 profile image
42 Replies

I'm new here... my husband had HIFU done two years ago and now his P.S.A. is rapidly rising. It has tripled in the last 8 weeks and now stands at 3.8. A 3T MRI was negative. We are trying to decide now between the P.S.M.A. scan and the axumin. any feedback or sharing of similar experiences is appreciated.

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sandy4510
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42 Replies
Tall_Allen profile image
Tall_Allen

Will insurance cover either, or is this an out-of-pocket expense that you are willing to pay? If Axumin is covered, his PSA is high enough so that it doesn't make a difference. I've heard Axumin is VERY expensive when not covered. Where can you get the PSMA PET scan even if you are willing to pay? It is only available on clinical trials to men who are recurrent after surgery or radiation, and in a few cases for high risk patients - none of which he would qualify for.

sandy4510 profile image
sandy4510 in reply to Tall_Allen

We are not sure if insurance will pay for the Axumin, but we can get it done here in Nashville for around 2,500. Have been reading about clinical trials for the PSMA and also considered going abroad. I have also read that with a higher PSA, the difference between the two scans lessens. Just want to get the most accurate scan possible! thanks.

Tall_Allen profile image
Tall_Allen in reply to sandy4510

$2500 for Axumin is a bargain!

sandy4510 profile image
sandy4510 in reply to Tall_Allen

yeah, i just asked my husband again and he may be wrong on that. He said the dr. office said it would be more like 8. for that price we may be better off going to Germany for PSMA.

Tall_Allen profile image
Tall_Allen in reply to sandy4510

$8000 is what I heard from several patients. If it's in the pelvic LNs, the best scan is the Combidex MRI available only in at Radboud University, Nijmegen, the Netherlands - it's about twice as accurate as a PSMA PET scan. It won't show everything, but it will show more.

cesanon profile image
cesanon in reply to Tall_Allen

Allen, under what circumstances do you think, generally, Combidex MRI is called for?

Tall_Allen profile image
Tall_Allen in reply to cesanon

(1) If you can afford a trip to the Netherlands + the cost of the imaging

(2) If after biopsy you have reason to suspect that the cancer is in the pelvic LNs (e.g., high grade, very high % cancer in the prostate, high PSA) and you can't decide if you want to have whole pelvic treatment

(3) If you've had RP with persistent PSA and you can't decide if you want to have whole pelvic treatment

(4) If you've had salvage radiation to the prostate bed and your PSA is still rising and you can't decide if you want to have whole pelvic treatment

So it comes down to money and what info one needs to be comfortable deciding on pelvic LN treatment. Even with Combidex the size limit is 2 mm, so it won't show everything that may be there.

cesanon profile image
cesanon in reply to Tall_Allen

It sounds like you approve it only for pelvis and not bones?

Tall_Allen profile image
Tall_Allen in reply to cesanon

The Combidex scan only works for lymph nodes, not for bones. Healthy lymph nodes pick up the iron particles, cancerous lymph nodes do not.

cesanon profile image
cesanon in reply to Tall_Allen

So Combidex scan may be the best for lymph nodes, but not for bones and other organs?

Tall_Allen profile image
Tall_Allen in reply to cesanon

You keep asking the same question, to which I can only give the same answer - it ONLY works for lymph nodes.

Joeym1040 profile image
Joeym1040 in reply to Tall_Allen

Tall_Allen: I had heard a few years back that after the USA did not

endorse Combidex that they were going to discontinue it in the

Netherlands. Snuffy Myers was a big supporter of it.

Tall_Allen profile image
Tall_Allen in reply to Joeym1040

What you heard was wrong. They are using it.

Joeym1040 profile image
Joeym1040 in reply to Tall_Allen

good

Karmaji profile image
Karmaji in reply to Tall_Allen

Do you know the VITUS prostate centre in Germany....

And the level of their know how....

Thanks

Tall_Allen profile image
Tall_Allen in reply to Karmaji

Sorry, I do not know of them.

ctarleton profile image
ctarleton

These links might be helpful for you and your doctor to call around and explore for the least patient price / best place to seek an Axumin scan within 150 miles of Nashville.

axumin.com/access-reimburse...

axumin.com/imaging-center-l...

Charles

sandy4510 profile image
sandy4510 in reply to ctarleton

thank you!!

sandy4510 profile image
sandy4510 in reply to sandy4510

I wanted to thank you again. You saved us 3,000

Cmdrdata profile image
Cmdrdata

I have had standard scan, high contrast, Axumin, 3T and Ferumoxytol(sp?) but none of them show any met(s) when my PSA was rising again. PSA is currently steady at 0.1 for the past few months under Zytiga. Ga68 PSMA scan, if I understand correctly depends on the condition that the PC expresses PSMA (the A for antigen), so it may/may not detect any mets too.

MichaelDD profile image
MichaelDD

My clinical trial quote (self pay UCSF) out of pocket for GA68 PSMA is $3200. I have it Oct. 12th.

Read that UCLA has it for $2600+? Haven't confirmed that yet.

sandy4510 profile image
sandy4510 in reply to MichaelDD

how long did it take you to get set up and approved? just wondering. thanks.

Tall_Allen profile image
Tall_Allen in reply to MichaelDD

$2650 at UCLA. Contact: Johannes Czernin 310-206-3226. They are also running a randomized trial of it, where it is free:

pcnrv.blogspot.com/2018/09/...

tango65 profile image
tango65

I had a GA 68 PSMA at UCLA in 2016. I paid $ 2600.

sandy4510 profile image
sandy4510 in reply to tango65

Can I ask how you contacted them?

sandy4510 profile image
sandy4510

And how long did it take to get in?

tango65 profile image
tango65 in reply to sandy4510

I knew one of the doctors in charge of setting up the scans at the UCLA in 2016. It took a couple of weeks to get it done. I do not know how thing are right now.

You could talk with the Institute of Urologic Oncology at UCLA and find out how to get a Ga 68 PSMA scan done.

urology.ucla.edu/iuo/prosta...

vandy69 profile image
vandy69

Hi sandy4510,

I had Axumin scan at Piedmont Hospital Imaging in Atlanta about one year ago and it was fully covered by Medicare. It picked up suspicious activity in liver that a subsequent MRI and biopsy confirmed as PCa invasion of liver.

Best wishes. Never Give In.

Mark, Atlanta

sandy4510 profile image
sandy4510 in reply to vandy69

Was that part b Medicare? My husband is 69 but still working so covered under work. May be worthwhile to sign up for Medicare b if they will cover. Insurance will not

vandy69 profile image
vandy69

Hi Sandy,

It was normal Medicare Parts A & B and I have AARP/ United Healthcare Supplemental plan.

Mark

Davidl3940 profile image
Davidl3940

Medicare paid my Auxium Scan at ASH in Augusta Ga.

Davidl3940 profile image
Davidl3940 in reply to Davidl3940

It showed nothing. Getting the PSMA Pet Scan at UCSF Friday. There was a $900 charge for injection.

sandy4510 profile image
sandy4510 in reply to Davidl3940

Good luck to you! We went ahead with the axumin and paid for it. It cost us 6k. It showed that his cancer has spread to three local nodes. Since the 3t MRI was clear we are so glad we went ahead with this scan. Not what we wanted to hear but at least we know what we are dealing with now

Davidl3940 profile image
Davidl3940

Now you have a target.

Davidl3940 profile image
Davidl3940

Possibly remove the nodes and/or focal radiation of them?

Tall_Allen profile image
Tall_Allen in reply to Davidl3940

I would not do that - PET scans do not show ALL the cancer - just the larger tumors (>4 mm). A new trial showed that whole pelvic salvage with ADT can be curative.

sandy4510 profile image
sandy4510 in reply to Tall_Allen

Thank you we feel we should look at that. Our urologist just wants him to go on adt. We need an oncologist to discuss this with.

Tall_Allen profile image
Tall_Allen in reply to sandy4510

Talk to a radiation oncologist.

sandy4510 profile image
sandy4510 in reply to Tall_Allen

Yes you are absolutely right on that

Ann0518 profile image
Ann0518

My husband has persistent PSA (1.74, now 2.09 5 months after RP) and his urologist has ordered an Axumin scan. Concerned BCBS may deny coverage. Where did you find the best prices for this scan?

Tall_Allen profile image
Tall_Allen in reply to Ann0518

He can get an even better PET scan (DCFPyL - a PSMA scan) for free now. Here's a list of locations now offering it:

clinicaltrials.gov/ct2/show...

V10fanatic profile image
V10fanatic

I had a 3T MRI in December 2019 which showed nothing. An Axumin PET in March of 2020 which showed recurrence in the prostrate only. I just completed the PSMA trial at UCLA this week and it picked up 5 separate bone mets. Needless to say, I'm glad I didn't rely on the Axumin scan or I would have gone with radiation to no real effect.

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