Anyone with experience with Axumin PET scan?

Hack73
Hack73 Member Posts: 2
edited March 9 in Prostate Cancer #1

will Waite for any possible responses before I tell my whole story. Doc wants me to get radiation of the whole prostate bed, oncologist mentioned it's a good probability that is the right target but no guarantee. I would like to have an AxuminPET scan but have to wait for my number to go from it's current 0.10 to 0.20 otherwise Medicare will not pay. I'm 73 - 4 years from my prostatect and my Gleason was 7. Numbers have been 0.05 until this past year when they rose to 0.09, back to 0.05 and the last one being 0.10. My doctor is quite conservative as well as concerned about the cancer moving into my bones - so am I!

Any input would be helpful. Clinics that do these scans are not keen to discuss much over the phone.

Comments

  • Hack73
    Hack73 Member Posts: 2
    #2
    PS

    Not asking for medical advice but am hoping perhaps I could find somewhere to address my concerns. Forgot to mention I live where there are no Axumin PET providers. So doctors here don't know much about it other than they are willing to give me a referral to a provider.

  • eonore
    eonore Member Posts: 118 Member
    #3
    Pet scan

    Hi Hack,

    Are you sure that Medicare will not pay?  I had an Axumin scan in November, 2019, and my Psa had only risen to .07.  Medicare paid for mine and approval was quick.

  • eonore
    eonore Member Posts: 118 Member
    #4
    Pet scan

    Just out of curiosity, where do you live?

    Eric

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    #5
    PET scan

    Hack,

    Welcome to the board. I think you doing well in getting a PET scan before the treatment. However, having this exam when the PSA is low (lower than 0.7 ng/ml) one risks to get false negatives. In fact, recurrence after surgery is considered when the PSA reaches 0.2. At 0.4 the AUA recommends salvage therapy. This is probably what your doctor is doing but you see it as conservative.

    In your shoes I would wait longer to allow the PSA to increase to levels that can warranty a positive result that would become the targets for the radiation. Nobody can expect to hit the bullseyes in the dark.

    Best,

    VG

  • AJA
    AJA Member Posts: 1
    edited September 2021 #6
    First time post from 20 yr survivor, now stage 4, PSA=0.4

    I was diagnosed 20 years ago at age 54 (Gleason 4+3=7). Radical prostatectomy immediately at Mayo Jacksonville;"We think we got it all." Nope. I started an anti-inflammatory regimen of supplements and Metformin

    5 years in,  rising PSA (4) triggered IMRT; PSA went back to undetectable. "Maybe we got it this time." Nope.

    15 years in, rising PSA (=6) led to choline C-11 scan, biopsy (gleason 8 in prostatic bed, positive in 2 pelvic lymph nodes), cryosurgery, RT and 1 year of  ADT at Mayo Rochester. PSA went undetectable. "This is a new treatment and a new scan. We don't know what to expect, but it's possible we got it all." Nope.

    Now, 20 years in I'm at Moffitt Cancer Center in Tampa with a slowly rising PSA (from undetectable to 0.4, over 5 years). My oncologist says "get checked every 6 mos and call me when it hits 0.5 -- which it will this month, given my doubling time. He will probably recommend a scan of some sort before treatment. 2 questions:

    (1) The last time I got treated, choline C-11 scans were state-of-the-art. I've heard of new scans (Axumin, 68 Ga PSMA). Does anyone know how they compare to Choline C-11  and to each other? What PSA or doubling time triggers their use?

    (2) What other options is my oncologist likely to recommend? (i.e. what should I be reading about now so I'm ready to talk to him?)

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    #7

    Hi aja,

    We have similar stories and have followed similar steps in treatments. You can read my experiences with pet scans in the links provide here;

    https://csn.cancer.org/node/320970

    In my opinion the 68Ga PSMA-PET is better but it got some limitations in detecting PCa, particularly at the areas close to the bladder. The image may come blurred because of excretion of the tracer via the urine. The recommended PSA level is above 0.70 ng/ml for the PSMA-PET and 1.50 ng/ml for the Axumin-PET. The Choline C11 scan is known to provide false negatives in low PSA levels of less than 1.50 ng/ml. The short period of the ttrace's half-life (radio isotope) also contribute to false negatives in these scans.

    In your shoes I would allow the PSA to increase to close to 2.00 ng/ml which gives you more assurances in having a positive result. You may become worried for the free ride but such level doesn't imply that the future treatment is prone to failure. 

    In a case like yours there is a tendency to look for systemic therapies like ADT and chemotherapy. Radiation is usually not recommended if the area has been previously subjected to RT but doctors use spot radiation in some cases. In this link below you can read the experience of a survivor confronting a similar situation 

    https://csn.cancer.org/node/320685

    Best wishes and luck in your journey. 

    VGama

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    #8
    Threshold

    Hack,

    I have learned a bit about PETS from 12 years of fighting/monitoring lymphoma (I have also had PCa {prostate cancer}, but never scanned for PCa).

    From what I have been able to read thus far, Axumin is FDA approved only for PCa relapse, which you do not currently meet the definiton of; I suspect this is the issue with insurance paying for it.  Also, even though Axumin is a bit more sensitive than other PET tracers (by detecting amino-acids specific to PCa), it is not hugely more sensitive, and both PET and CT scans seldom detect metastatic PCa until it is fairly advanced and/or aggressive.  That is, for very mild metastatis, with low PSA, false negatives are the norm.  I read an article at a reputable site that said that Axumin is 'somtimes' able to detect PCa metastasis in men with PSAs lower than around 10.0, and sometimes 'much lower than 10,' but it did not specify (numerically) what 'somtimes' means, or what 'much lower than 10' means.  Ask your doctors. 

    Of course, anyone can pay out-of-pocket for almost any medical proceedure that a doctor will order, if that is feasible, but for most men (like me), it is not.   

    Axumin PETS are widely availabe at most cancer centers, so where you live should be, in most cases, not an issue.

    The Axumin website ( axumin.com ) has answers for most of these questions, and also lists sites that offer Axumin PETS based upon zip codes.  I wish you luck with all of this, and hope that you never cross the relapse threshold,

    max

  • Josephg
    Josephg Member Posts: 317 Member
    #9
    Axumin PET

    I had an Axumin PET scan earlier this year, when my PSA rose to 0.98, and it identified a lesion in my left pubic bone.  The lesion was treated with SBRT, and I am currently 7 months into a 2 year hormone therapy cocktail of Lupron, Zytiga, and prednisone.  Medicare and Medicare Supplemental insurance covered the entire cost of the PET scan and the subsequent SBRT treatment.

  • skelly31
    skelly31 Member Posts: 11 Member
    #10

    Hi all,

    How do these "seemingly low" PSA numbers for treated PCa's relate to a 7.43 PSA measure for an "Active Survalence " treatment option?

    IMRT- What is this?

    choline C-11 scan- what is this?

    68Ga PSMA-PET- what is this?

    Is the Axumin the newest best scan?

    I'm gleason 6 and at the 5-year mark from diagnosis. Should I get the 5 year biopsy first? Or the PET Axumin scan first? (I just got a 2nd pelvic MRI... came back " negative"). (Financing is a concern)

  • Old Salt
    Old Salt Member Posts: 899 Member
    edited March 9 #11

    Skelly 31

    Please, ask these questions in 'your own' thread. Several have already been answered...

    Do I need an Axumin PET Scan? — Cancer Survivors Network

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