Axumin PET scan with undetectable PSA - Advanced Prostate...

Advanced Prostate Cancer

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Axumin PET scan with undetectable PSA

Ralph1966 profile image

My MO at USC sent me to a second Axumin PET scan, although my last PSA was undetectable < 0.008

I have Gleason 9 (4+5) RRP surgery September 2017 tumor confined to the capsule, BCR (recurrence) April 2019 with 3 consequence rise in PSA from 0.05 0.09 and 0.11.

38 rounds of SRT August 2019 with 6 monthly injections of Fermagon, PSA went down to undetectable < 0.008.

After the BCR and with PSA of 0.11 he sent me to Axumin PET scan (before SRT/ADT) which shows nothing other than non-specific 1 subcentimeter inguinal lymph node and L1-L2 with right hip degenerative bone changes (I am 54 years old) with the recommendation of follow-up with this lymph node finding although of mentioning it is unlikely a metastasis.

I had some moderate back and hip pain recently in my right hip, and my PCP sent me for a CT scan, the radiologist reading that I have prostate cancer mentioned "possible bone metastasis" for the same areas that showed degenerative bone changes in the first Axumin PET scan 2019.

My PCP sent me to a bone scan which was negative for bone metastaisis.

I am checking my PSA every 3 months which is still undetectable < 0.008.

I told my MO that I am worried so he said that he can refer me for an Axumin PET scan at USC, for which I got insurance approval but will have to pay $ 1,400 out of pocket.

Now I am thinking that why should I rush to Axumin PET scan with undetectable PSA? Is there a change in the guideline? also, what are the chances to find any metastatic lesions with a PSA < 0.008?

I am thinking to postpone the Axumin PET scan until a reasonable PSA level reached.

I forgot to say that my last Testestron level was 102 up from < 10 after the 6 Firmagon injections.

My next PSA and T level test is in 2 weeks from now.

Please advise should I do the Axumin scan now or wait for a detectable PSA?

Thank you for reading my post.

29 Replies

Who is your MO?

Ralph1966 profile image
Ralph1966 in reply to _Kristina

Dr. Jacek Pinski

_Kristina profile image
_Kristina in reply to Ralph1966

Did you do the first Axumin scan at USC or elsewhere?

Ralph1966 profile image
Ralph1966 in reply to _Kristina

I did the first and the only one at USC.

dhccpa profile image
dhccpa in reply to _Kristina

Is Pinski a good or bad MO?

Ralph1966 profile image
Ralph1966 in reply to dhccpa

You can google his name. He is involved in a lot of clinical trials for prostate cancer treatment.

With PSA less than 0.008...chances of finding mets is ZERO. Your anxiety is getting best of you. Just take it easy..Man.

Ralph1966 profile image
Ralph1966 in reply to LearnAll

Thanks for the advice but what is the minimum level of PSA that one may consider undergoing Axumin PET scan?

LearnAll profile image
LearnAll in reply to Ralph1966

IMO...at least 0.02 or higher. (for men who had RP)

Ralph1966 profile image
Ralph1966 in reply to LearnAll

PSA 0.02 or 0.2 to have an indication for Axumin PET scan?

mrssnappy profile image
mrssnappy in reply to Ralph1966

The product information compares PSA over 1.78 and less than. So, if your PSA is over 1.78 you have a better chance of something showing up than if it is less than 1.78. See page 8 -The detection rate of Axumin seems to be affected by PSA levels [see Warnings and Precautions (5.1)].

In general, patients with negative scans had lower PSA values than those with positive scans. The

detection rate (number with positive scans/total scanned) for patients with a PSA value of less than or equal to 1.78 ng/mL (1st PSA quartile) was 15/25, of which 11 were histologically confirmed as positive. In the remaining three PSA quartiles, the detection rate was 71/74, of which 58 were histologically confirmed. axumin.com/prescribing-info...

Quit stressing yourself. An Axumin scan has a 0.008 % chance of showing anything. You are currently in a very good place. Enjoy life.

It is really stressful situation. Having PCa with Gscore of 9 tells me that metastasis is a matter of time and univetable....

Shooter1 profile image
Shooter1 in reply to Ralph1966

Agree, someday maybe soon I will have a problem..Last 4 PSAs 0.00,0,08,0.12 and 0.11. Somewhere something is lurking but Gleason 9/10, RRP in 2017 with PSA rising 10 point in next 6 week rather than falling. No clear margins, in lymph nodes, extracapsular extension and in neural and venous bundles out of prostate and in nerves and veins passing through tissue samples away from prostate elsewhere in abdomen, I should expect something to be lurking 3 1/2 years into this war. You I would think are worried about a lot of nothing. Best of luck in your treatments and hope to be here and active to talk to you in years to come if yours ever progresses.

An Axumin PET now is certainly a waste of your money.

Ralph1966 profile image
Ralph1966 in reply to Tall_Allen

Thanks TA

RonnyBaby profile image
RonnyBaby in reply to Ralph1966

What T_A said .....

The axumin PET/CT scan has a role in the follow up of patients with BCR, particularly when the PSA is greater than 2 (detection rate around 90%). The detection rate for extra prostatic lesions is less than 5% when PSA is 0.2 or less. I do not know if any patient with undetectable PSA has been included in this study or similar studies.

redjournal.org/action/showP...

If you are worry about these "bone lesions" found in the CT scans, you could request a 3T MRI of the areas affected. This type of MRI studies are been used when there are equivocal (low SUV values) lesions in PET/CT scans.

It is not medicine but only common sense. When trying to compare two things have as many as possible parameters equal so that if any difference is observed to be able to attribute it to the dissimilar few. The parameter under check now is elapsed time. You want to check if any radiographical progression has occured between the time of the first and second pet scan. Knowing that the detection rate of the scan is a function of the PSA value, such comparison has meaning ONLY at the same PSA level. Otherwise you are comparing apples with bananas, not even oranges. You will have to wait until 0.11. Hope that you will wait long enough and if ever needed the more sensitive PSMA will be approved by that time.

Ralph1966 profile image
Ralph1966 in reply to Justfor_

Thanks Justfor_ for your feedback..

My PSA IS NOW 0.55 I am also Gleason 9 You are in a great place for many years to come

That's where I would love my PSA to be and hopefully it is still receding

And I am more hopeful than ever

Things are working in our favour

Let's give thanks and be happy with these results

There will be a time to worry and its years off

Have a Merry Xmas and do things you always loved to do

That's what I am doing it's been a good year for me

Finished my treatments with great great success not as well as you but I am extreemly gratefull

Come on brother give the misses I big hug she probably needs one and be happy she'd some cheer wherever you are

Lost a fitness master yesterday

You wouldnt believe it

One of the fittest men I know

Respiratory failure

NOW THATS HARSH !!!

WE ARE HERE RIGHT NOW

Lord I thank you my friend Ralph is with us and is in a good place to have many years of happy moments

My condition is similar but my numbers are different. G8, 2008, no surgry, RT 2008, PSA rise in 2011, (indicating metastasis), Lupron with Casodex 2012, -14, -16, and -20. Scans including Axumin showed "possible metastasis". I think radiologist was guessing. Your quesstion is whether to rescan. My understanding is to try to minimize scans as they can cause malignancy. due to radiation expossure Once a year or so is okay, I think.

Your PSA is way low. Recommendation is for 0.2 or greater indicates possible malignancy. My latest PSA is 0.2. I am on Lupron (shot every 3 months) with Xtandi daily. I can feel mets in spine, rib, neck, skull, although they are fading recently.

An Axumin scan is not very reliable until your PSA reaches 2.0. The most sensitive scan right now is a PSMA scan which will likely become FDA approved in 2021 is most effective once your PSA reaches 0.5. This is from my MO, Dr. Sartor out of Tulane. So it seems that your money would be wasted. I too am fortunate to be in the undetectable club currently and aside from PSA I always keep an eye on my Alka Phos number. If it’s elevated it could be a sign of bone breakdown due to PCa.

And I get my T tested regularly to be certain that it remains under castrate level <20. But no scans unless PSA reaches the parameters above.

Ed

LearnAll profile image
LearnAll in reply to EdBar

You are smart...if you monitor ALP along with PSA. 👍 Agree ..even with most sensitive scan, PSMA PET Ga68...one needs 0.2 PSA to see anything cancerous. Axumin is less sensitive than PSMA.

EdBar profile image
EdBar in reply to LearnAll

Those were the 3 things that Snuffy Myers told me to focus on before his retirement.

Ed

LearnAll profile image
LearnAll in reply to EdBar

Dr Charles Myers is one of the greatest Oncologist in USA. He is absolutely correct about monitoring biomarkers.PSA, Bone specific Alkaline Phosphatase (BALP) and Total Testosterone is what is sufficient for monthly monitoring in most regular Adeno-carcinoma cases. If you want more ,then CRP, LDH and Albumin level can be added.

Ralph1966 profile image
Ralph1966 in reply to LearnAll

So it is not Liver Alkaline Phosphatase but Bone specific Alkaline Phosphatase (BALP). What is the relation of Bone specific AP with PSA? I mean at what level we consider this enzyme is high? Can it go high with undetectable PSA?I have my Liver-specific AP climbing up (82) with using of statin and Fenbendazole / Berberine. Should I ask my PCP to include Bone specific AP with total Teatesterone and PSA for my next coming blood test? What else to include as a biomarker?

LearnAll profile image
LearnAll in reply to Ralph1966

Great questions..Ralph..ALP has mainly two components..Liver specific and bone specific. If your liver is working fully normally..then 50% is coming from Liver and remaining 50% coming from Bones.

For purpose of monitoring status of bone metastases. it is Bone Specific Part which gives us the right picture and that is what we should test. Insurance Co s and Doctor order Total ALP because it is inexpensive. Total ALP has a pitfall as in abnormal liver ,most of it may be coming from liver and that causes false results about status of bones.

Now, About Relationship of PSA and BALP. If one has fully androgen sensitive PCa and cancer cells are producing lots of PSA.. then. .there is a linear relationship. But, there are men who have Low PSA secreting ,aggressive cancer cells...In such men. .PSA and BALP does not have parallel path... PSA can be very low but BALP can be high as bones are being repaired at high rate because they are being damaged by low PSA aggressive cells.

Main purpose of monitoring Testosterone is to catch rising PSA with Low T (below20) so we can know early on if castration resistance stage is starting.

Lastly, because your liver is not in ideal shape, I would suggest you need to test Bone Specific ALP in order to assess status of bone mets.

Some people who have aggressive variant of prostate cancer or have lot of NeuroEndocrine cells ...they have bone breaking type mets (called Osteolytic lesions)

BALP does not assess that. For assessing bone breaking type Osteolytic lesions, we need another biomarker.. which is called Urinary N Telopeptide ( Urinary NTX) which give us rate of bone resorption. Only a few very smart oncologists order and monitor these . Most of them are McDonalds.. we are talking of fine dining here.

Partner, I think you should just relax, be thankful for where you are and enjoy life. I was a Gleason 9 when I had my RP in 8/2016. Each PSA since then has been undetectable. I had 38 radiation Treatments six months after surgery. The radiation oncologist had to stop my treatments four doses short of the 42 originally planned. He said my colon has some sort on atypical turn to it and he feared more radiation would damage it.

My cancer had made it to the margins. Although I get most of my healthcare through the VA, I had the robotic surgery performed by my civilian urologist. He, the radiation oncologist and the VA Urologist all follow me.

On my first trip to the VA Urologist after my surgery (I had sent him all of my non-VA surgery and radiation records) the doc walked into the examining room and exclaimed, “Damn! It sure is nice to get a patient who is going to live ten years!” “ They usually give me the train wrecks!”

Like you, I had been worried that my Gleason 9 status meant recurrence and death. In my case (age 67 at surgery, 71 now) something else is likely to take me before any PC recurrence. I’m also told there is a good chance I’m totally cured. If I make it to the five year mark both Urologists tell me I’ll be considered cured. My radiation guy told me at my last visit 3 months ago that “If there were any prostate cancer cells remaining in your body they would have made themselves known by now.”

I’ve quit worrying about it. I can’t prevent it recurring if, in fact, there are still some cancer cells in my body. I decided a year or so ago to just live my best life and give thanks to God for his mercy and stop looking in the rear view mirror.

I pray you are able to find peace and put all fear behind you!

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