Why not start with Axumin scan... - Advanced Prostate...

Advanced Prostate Cancer

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Why not start with Axumin scan...

Tommyj2 profile image
40 Replies

A little perplexed as to why Docs don't start WITH an Axumin scan. Is it primarily an insurance issue?? If a negative nuclear bone scan is so frequently shown to NOT pick up bone mets it makes little sense on the face of it ( except from the financial standpoint)... Also... does picking up mets that are too small to be noted by a standard bone scan alter the "projected" survival time? I am presuming that most of the statistics from which median survival times were derived relied on mets detectable on standard bone scans...... wonder what might be the time between detection of oligomets and detection by standard nuclear bone scan ( or am I making an artifical distinction??

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Tommyj2 profile image
Tommyj2
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tango65 profile image
tango65

It is not approved for newly diagnosed prostate cancer. It is only approved for biochemical recurrence.

axumin.com/

I agree with you . It does not make any sense to do bone scans and CTs when one could use more precise techniques. One problem is to use guidelines that were made using CT and bone scans, in patients studied only with Axumin scans. I bet that many patients in the RCT for new anti androgens etc had metastases or they had more metastases that the ones documented by CT and bone scans. If a bone scan shows only 3 metastases and an Axumin scan shows 8 metastases, is the patient oligometastatic or not? It is going to take some time before the Axumin scans and the PSMA PET/CTs are incorporated in newly diagnosed patients, in planning treatment etc.

ctarleton profile image
ctarleton

Don't know, but some of the initial research is probably in the two papers below. (With comparable positive detections affecting treatment decisions running in the 85% range for the usual NM Bone Scan + CT Scan vs. Axumin Scan, the cost/availability/insurance issues could very likely be coming into play in a typical clinical practice.)

Note the section called "Osseous Disease":

jnm.snmjournals.org/content...

Note the section called "Bone Metastasis" and elsewhere:

academic.oup.com/jjco/artic...

Tommyj2 profile image
Tommyj2 in reply to ctarleton

Thanks for the references..... I admit to difficulty making sense of the complexities in these articles... wish there were a " readers digest" version of these articles that took them down a notch and made them a bit more accessible to those who don't have an extensive science background ( or the concentration to read and re read until it is understood : )

Tall_Allen profile image
Tall_Allen

Axumin is expensive and is not FDA-approved unless one is biochemically recurrent. There are clinical trials for PSMA scans in high risk men.

Ralph1966 profile image
Ralph1966 in reply to Tall_Allen

Hi TA,

Since they are injecting radioactive substance intravenously, is there any hazards of taking repeated Auxumin PET scans? What is the safe period between one scan and another?

Tall_Allen profile image
Tall_Allen in reply to Ralph1966

There is certainly significant exposure to radiation from both the fluciclovine and the full body CT scan. It's not something to be done routinely. But when it's needed for a critical decision or treatment, its need may exceed the risk.

Tommyj2 profile image
Tommyj2 in reply to Tall_Allen

Thanks TA... hadn't really thought about the radiation exposure... Frankly with all the radiation most of us are exposed to it's a wonder that we haven't developed secondary cancers...... or perhaps we have OR mutated the original Pca??

Sxrxrnr1 profile image
Sxrxrnr1 in reply to Tommyj2

It could take many years before a secondary cancer caused by a scan,,,or radiation therapy,,,might show as a subsequent cancer.

General opinion is that upon diagnosis of PCa as a result of PSA screening(which is generally much sooner than being detected from a Dre or being symptomatic) may have originated 10 to 20 years earlier. Of course PCa is a very slow growing cancer(usually) when compared to others such as lung cancer. Therefore such cancers will be diagnosed much sooner after initial creation.

It is generally understood that secondary cancers are substantially of higher risk of diagnosis for those treated via RT for PCa than those treated via RP. Colorectal as an example in particular. Perhaps too bladder or testicular.

Tommyj2 profile image
Tommyj2 in reply to Sxrxrnr1

Good to know.....

Bob

Tommyj2 profile image
Tommyj2 in reply to Tall_Allen

I ask because I am recurrent.... I guess I could simply proceed to ADT without knowing the exact location of the recurrence but expect it would be helpful in case there is anything that I might do other than ADT initially..... given slow PSADT and relatively low 7 yr post EBRT Psa of 5.9. What other scans are available ( within the scope of general clinical practice) that might identify the location of the recurrent cancer.... full body CT ? I had a false sense of safety before reading more extensively on this forum and now I would like to see if it is possible to get the best information with the fewest # of tests and cumulative radiation exposure.... Plus... my kidneys are heading south and contrast is not going to do me any good for sure.....

Tall_Allen profile image
Tall_Allen in reply to Tommyj2

Recurrent men can get Axumin, at least on Medicare. They give it with a full body CT. Most often, the cancer is systemic and too small to be picked up on a scan.

Tommyj2 profile image
Tommyj2 in reply to Tall_Allen

Sorry for all the questions... by systemic do you mean it might well have settled in numerous areas microscopically and just needs time to express itself it one or more of those areas??

Tall_Allen profile image
Tall_Allen in reply to Tommyj2

Right. Even the best PET scans cannot detect a locus of cancer of less than about 4 mm. Cancer nests in many reservoirs (especially bone and lymph nodes) and in circulation in the blood and lymph, and may not grow appreciably for years.

Tommyj2 profile image
Tommyj2 in reply to Tall_Allen

The whole damn thing is such a crap shoot... Question for me is whether or not to do additional scanning with the inherent risks in hopes of identifying a locus ....leaving it alone until PSA and doubling time change appreciably or just going with ADT now ( if it isn't obvious already....something I am deperate to avoid if I possibly can).... But that's what I'll have to ask all the other professionals when I decide on some people for follow up....

Tall_Allen profile image
Tall_Allen in reply to Tommyj2

I'm not at all sure that it accomplishes anything to treat a metastasis. It would reduce PSA, but whether it does anything to delay progression is unknown. Usually, a known met, high PSA, or short PSADT are reasons to start ADT. But there are some indications that ADT sooner may improve survival. As you say, lots of unknowns and no certainty.

Tommyj2 profile image
Tommyj2 in reply to Tall_Allen

Yup... that is the damnably difficult thing about all of this.... for all I know I could survive another 10 yrs relatively symptom free with a better quality of life off ADT or survive 15 yrs with ADT compromised in my ability to do the things I like to do... OR I could have a rapid progression when I least expect it even though my Pca appears somewhat indolent at present..... Guess I'll have to see what kind of a gamblin man I am when faced with the decision a week from now... Wish there were better more contemporary information on survival rates untreated for people in my situation..... As always thanks for your helpful input......

GP24 profile image
GP24 in reply to Tommyj2

Would you have a shorter life if you start with ADT e.g. 7 years from now? No evidence for that.

Tommyj2 profile image
Tommyj2 in reply to GP24

Thanks GP...

any references for that statement??.... I am REALLY wrestling with whether to start ADT... getting a lot of pressure from docs and friends to do it but I really wonder if I am doing myself any favors with my current situation being as it is.... could I not wait until I see more significant progression to start ADT and not compromise too many years of survival...

thank you for your response...... evidence based OR opinion based... always happy to hear anything that does not say " run don't walk to ADT"

GP24 profile image
GP24 in reply to Tommyj2

The right time when to start the ADT is currently unknown. Urologist usually start ADT as soon as the PSA value rises because the rising PSA value worries their patient. However, this is not recommended by the guidelines.

The American NCCN guidelines mention:

"Earlier ADT may be better than delayed ADT, although the definitions of early and late (what level of PSA) are controversial. Since the benefit of early ADT is not clear, treatment should be individualized..." (With other words, do whatever you like)

The European guidelines state:

"Based on the lack of definitive efficacy and the undoubtedly associated significant side-effects, patients with recurrence after primary curative therapy should not receive standard HT. Only a minority of them will progress to metastases or PCa-related death. The objective of HT should be to improve OS, postpone distant metastases, and improve QoL. Biochemical response to only HT holds no clinical benefit for a patient."

uroweb.org/guideline/prosta...

So in your case the argument for ADT is: your doctor treats all his patients this way.

Tommyj2 profile image
Tommyj2 in reply to GP24

Thank you for this information.... it's nice to hear something that is NOT one size fits all for a change.... If I were just beginning to rise after curative Tx I would definitely post pone HT.... but... I already postponed it... NOW the question is whether or not to postpone it further and whether doing so would significantly affect lifespan..... I am literally obsessing over this because HT would likely significantly negatively impact every single remaining interest and hobby that I have in later life.... trading years for QOL is a very difficult decision for me ( and many men I presume..... though those who have never been particularly interested in physical fitness and activity perhaps a little less so?? ) Where's the table that says " 5 years of high quality of life without Tx.... 10 yrs of crap quality without HT : )

I realize, of course , that there is no way to be sure but I am still looking to hedge my bets as best I can.... People tell me.... " just try it" if you can't stand it stop"... It doesn't sound as simple as that as once your levels are reduced it appears that they never return to a similiar level.... Again....thank you for a very rational reply and reference.

Bob

GP24 profile image
GP24 in reply to Tommyj2

The American cancer society writes on page 31:

"But not all doctors agree with this approach. Some are waiting for more evidence of benefit. They feel that because of the side effects of hormone therapy and the chance that the cancer could become resistant to therapy sooner, treatment shouldn’t be started until a man has symptoms from the cancer."

cancer.org/cancer/prostate-...

I would say, waiting until symptoms appear is the latest point in time when to start ADT. But since there is no good evidence for early vs late, these patients may live just as long as the ones who started early.

Tommyj2 profile image
Tommyj2 in reply to GP24

Great information....thank you. For myself... I think I would be much more inclined to seriously consider starting HT when my PSA/DT falls below 12 months.... and very seriously consider it if it falls below 6 months.... If I do have bone mets that have yet to be detected ( with more sensitive scans) they would appear to not yet have gained a lot of traction.... I am imagining that if they are to be worried about they would begin to affect my PSA/DT adversely.... which leads again to the question of whether or not learning the location of the cancer that is causing my PSA to rise ( Gallium or axumin scan etc) now is of any significance if there is no strong indication to Tx yet.... ie... will what I don't know hurt me or is considered ignorance a sensible stance

: ) Again.... You've given me some of the best info I've gotten so far..... I really DO get that my current situation is not desperate and does not match the requirements of many on this forum..... but things could turn around unexpectedly at any moment....

Tall_Allen profile image
Tall_Allen in reply to Tommyj2

Well, there is some evidence that sooner is better, but I'd like to see if the mortality improvement still holds up at 10 years:

thelancet.com/journals/lano...

I'd label it suggestive rather than definitive.

Dayatatime profile image
Dayatatime

Imaging will play a big part in the future treatment of this disease. Here are a few active PSMA trials going on and information about them....

cancer.gov/about-cancer/tre...

Ron

tango65 profile image
tango65

Just my personal opinion after what I have read about diagnosis and treatment of PC. If my doctors were suspecting I could have prostate cancer or if I were newly diagnosed with PC, I will not let them touch me without a mpMRI and a PSMA PET/CT. This way one may have a better idea where the cancer is located and what may be the best treatment.

in reply to tango65

Good idea because as soon as they drive your psa down with drugs below .5 the pet scan is useless. Wish I had understood that.

C-RI profile image
C-RI

I had initial PSA of 83 and positive biopsy. Then some good news, negative bone scan and negative pelvic MRI. Surgery was scheduled. Then some bad news, a second PSA test a few weeks later came in at 98.9. We cancelled surgery, and insurance company agreed to Aximum scan before we go any further.

Tommyj2 profile image
Tommyj2 in reply to C-RI

Have you gotten the results of the more recent testing.... ?? Hoping it was no worse than the original...

Bob

C-RI profile image
C-RI in reply to Tommyj2

Scan is Wednesday. I’ll keep you posted.

C-RI profile image
C-RI in reply to C-RI

Scan came back negative for spread. Despite my high PSA - we are proceeding as if contained. Surgery, then reevaluate for adjuvant radiation and possible hormone therapy depending upon clinical indicators.

Tommyj2 profile image
Tommyj2 in reply to C-RI

That's GREAT news!!... If it's not being picked up on Axumin that's about the most you can do at present. Do, of course, wonder why PSA is so high but why argue with good news..

what was your original Gleason?? How many cores positive??

C-RI profile image
C-RI in reply to Tommyj2

Gleason 3+4, 6 of 12 positive. I will take the good news, but part of me thinks this won’t be the end of it...

Tommyj2 profile image
Tommyj2 in reply to C-RI

I know what you mean.... I think it's important for us to remember that the people on this group do not represent the majority of prostate cancer sufferers.... this can be both good AND bad as we have people who have defied the odds both positively AND negatively.. I've read of some guys with Gleason 6 having capsular extension and later mets to bone.... in the same manner I've read of people with with Gleason 9 and extensive bone mets living 15 + yrs... This group has convinced me that anything is possible and to both not assume AND to hold out hope. Frankly if someone outside this group came to me and said they had a PSA of 98 at Dx I'd be thinking to myself " Oh Boy...not good" and yet here you are Clear on Axumin.... defying the odds once again. I REALLY get why you feel this isn't the end of it having read the stories of so many on this forum but DO keep in mind that we are all defying the odds and there is as much reason to be hopeful as to doubt..... I'm 7 years out with rising psa that started at .2 post radiation and has been climbing ever since.... I had decided early on that I would NOT have ADT and would let the cancer kill me when it was my time.... I did OK until it reached 4.5 and then I started losing my nerve.... Nuclear Bone scan came back negative and had I never joined this forum I would have breathed a sigh of relief.... NOW I feel convinced that I need axumin to establish where the damn cancer is because their may well BE mets.... I can tell you that if have an axumin and it comes back clear for bone mets I'm going to assume that I am clear enough to pursue options other than ADT ( I am desperate to avoid ADT)...... my life pretty much sucks at this age with arthritis keeping me from the activities that used to tide me though.... I'm not invested in living a long while...just scared of dying a crappy death : ) ...... If we were able to choose when we wanted to bow out I would just let the cancer take me but as matters stand I will be forced to endure terrible symptoms before being " released" from this world. Sounds like you have been given a new lease and I am hoping that matters turn out as positively as they seem to be stacking up right now..... keep us all posted..

Bob

C-RI profile image
C-RI in reply to Tommyj2

Thank you, and man I understand exactly how you feel.

andrew61 profile image
andrew61

If I knew then what I know now I would definitely start off with an Axumin / Choline / PSMA scan to see what's really going on. I think this should be standard for Gleason 7+ but it isn't so you would have to pay for it yourself.

Expensive in the USA (thousands) but PSMA in Australia it's about $A800 (worth the airfare). I had a PSMA scan done there while traveling for work.

mcp1941 profile image
mcp1941

What is the combined cost of a T99 BS and a CT scan compared to an Axumin PET/CT scan? Can it be that much different? Also you are subjecting your body to two additional doses of radiation that will not be needed if you went directly to an Axumin scan.

Tommyj2 profile image
Tommyj2 in reply to mcp1941

That is my concern as well.... Dosing yourself extensively with radiation contrast twice because the first round of tests was just required before the insurance company would allow the more informative test makes little biological sense

Interesting topic to discuss. I have been thinking about it myself. Thanks for posting it

Pierreb profile image
Pierreb

We started with Axumin at our urologist after recurrence. Thanks to this site we started to see an Oncologist at Northwestern University in Chicago. My recollection is that she stated that generally there is a bone scan and CT before Axumin. I believe she also said that generally the data used in studies, etc (ie number of mets, locations, etc) is from CT / Bone scan data. She suggested doing the CT and Bone scan so we have it as a base line. In my Dad's case if they used the CT/Bone scan alone they would have not seen the metastatic lymph node which does not show up on CT or Bone scans. We did have some issues getting the insurance to pay for it but they did.

Tommyj2 profile image
Tommyj2 in reply to Pierreb

Now THAT makes sense to me!.... Hellish to have a bunch of tests that give one a false sense of security... a bunch of negatives only to then have the axumin come back with a bunch of mets you would not have thought you had....not to mention the additional radiation. Admittedly, in some ways I don't WANT the axumin for that very reason.... but... likey need to do it.

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