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On my way for PSMA PET

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Posted 9/28/2021 5:30 PM (GMT 0)
so i am literally on my way for a newly fda approved psma pet scan. My last psa reading was 0.3 so the MO says with a gleason 8/9 we should roll the dice and hope for some actionable information.

So as I am waiting for the train to take me into Philadelphia I find myself thankful for

1) those with the ingenuity and intelligence to uncover this technology
2) All the folks involved in the clinical trials that proved its value
3) my insurance for helping pay for it
4) The people i am about to meet who will do the test

I will let everyone know how it goes!
Posted 9/28/2021 7:44 PM (GMT 0)

Stephen S said...
so i am literally on my way for a newly fda approved psma pet scan. My last psa reading was 0.3 so the MO says with a gleason 8/9 we should roll the dice and hope for some actionable information.

So as I am waiting for the train to take me into Philadelphia I find myself thankful for

1) those with the ingenuity and intelligence to uncover this technology
2) All the folks involved in the clinical trials that proved its value
3) my insurance for helping pay for it
4) The people i am about to meet who will do the test

I will let everyone know how it goes!

Good for you, Stephen, and may you get some very useful info from it!
Posted 9/28/2021 10:45 PM (GMT 0)

Hello, Stephen S. ~~~

You've got an ATTITUDE OF GRATITUDE, that infuses your recent post.

You see --- and recognize --- and appreciate --- how advancing technology and innovations are leading to enhanced healthcare for you.

I'm just stepping into the beginning of my ninth year of survivorship, since diagnosis.

Just as I was diagnosed, a wave of new breakthrough treatments and medications were just emerging --- such as XTANDI, ZYTIGA, and XOFIGO --- along with new treatment approaches such as "the early chemo plan" ... along with enhanced scans and diagnostics.

I remember reading an article then calling it the "Golden Age" for strides forward in prostate cancer treatments.

We all still await further breakthroughs and innovations.

But, each time I visit the oncology center, I ALWAYS hold onto the thought and HOPE that a newly diagnosed fellow today is being told, "We have many new viable treatment options for you."

Here's hoping your appointment went well, Stephen S. -- and here's to the advancement of these scans that help lead to enhanced and targeted treatments for our brothers in need.

A good evening ahead --- appreciative of your contributions here!

CYCLONE --- # Iowa State University
Posted 9/28/2021 10:47 PM (GMT 0)
Good luck Stephen, i hope the scan bears fruit in the form of something you can aim at.
Posted 9/29/2021 1:14 AM (GMT 0)
Great news, let us know how it goes. There is clearly something going on, now to find it.

Was there any pushback from your insurance or did they roll with it based on the recent FDA approval?
Posted 9/30/2021 11:34 PM (GMT 0)
Stephen,

Good for you…great attitude…let us know…

I was in a PSMA trial a few years ago at NIH. They did two scans at the time. A PSMA and a Sodium Flouride f18 pet/ct for comparison. Ironically, the PSMA didn’t show anything, but the f18 showed a spot on one of my ribs (that spot was confirmed by biopsy.).

Fast forward to 2 weeks ago…I had a Pylarify PSMA scan with my PSA at .2. This PSMA found one spot…that same rib…

I think the older generations of PSMA scans were not as sensitive/accurate as the newer ones.

I’ve had this rib radiated before so it will be interesting to see what my doc says tomorrow.

Again, let us know what the results are…

Btw…My insurance (after an appeal) gave me a preauthorization for the PSMA that I just had.

Thanks,
Jerry
Posted 9/30/2021 11:48 PM (GMT 0)
Good luck!
Posted 10/2/2021 10:40 PM (GMT 0)
So the MO released the results of my scan this weekend and it didnt find the location of the critters. I meet with him on Tuesday to discuss next steps but I have a recurrent incisional hernia that needs to be fixed….so I am going to get that done….heal and take it from there.
Posted 10/2/2021 11:51 PM (GMT 0)
One thing interesting in the report was this sentence “Multiple subsequent pulmonary nodules below the resolution of the PET/Ct”

For about a week earlier this summer I noticed during my morning walks a burning in my chest. I almost went to a cardiologist but it didnt affect my walking ability and it eventually stopped occurring.

20 bucks says I was asymptomatic covid that week, but i fought it off(!!) and the ct scan picked up the resulting damage.
Posted 10/3/2021 2:29 AM (GMT 0)
Thanks Stephen for the update. Kind of a mixed feelings I bet…You want to find something, but on the other side…nice that it didn’t show anything. Plenty of options to go over with your doc…

My doc doesn’t think the rib that lit up is legit since it has shown on multiple f18 scans for the past several years…who knows…

That was kind of interesting about the imaging and possible Covid pics…
Posted 10/3/2021 2:58 AM (GMT 0)

Jerry L said...
My doc doesn’t think the rib that lit up is legit since it has shown on multiple f18 scans for the past several years…who knows…

Looking at your signature You have an interesting story there Jerry L. We seem to be traveling a similar path. Diagnosed young. Gleason 9. T3b. Your story gives me hope!
Posted 10/3/2021 3:09 AM (GMT 0)
Stephen,

Being diagnosed rather young comes with unique challenges that’s for sure…shoot me an email if you’d like and we’ll compare our stories and stay in touch…
Posted 10/3/2021 3:39 PM (GMT 0)

Mumbo said...
Was there any pushback from your insurance or did they roll with it based on the recent FDA approval

I did not have any pushback, and am thankful.
Posted 10/3/2021 4:52 PM (GMT 0)

Jerry L. said...


My doc doesn’t think the rib that lit up is legit since it has shown on multiple f18 scans for the past several years…who knows…

I've had 5 or 6 Bone scans over the years. Despite large differences in PSA values when the scans were done, the "faint uptakes" on one rib and one spot on my pelvis have never changed. The Radiologists' impressions on each set of scans were always that these uptakes were not from metastasis. I have always wondered why I was approved for Xtandi without radiological evidence of progression. At a recent MO appointment I speculated where my mets might be. The MO said, "well you have bone mets." Then he he said something about looking at my scans again sometime. Lol. I didn't push him -- I'm just glad he got approval for the Xtandi because the cancer is clearly somewhere. But, as Jerry said, who knows if my bone spots are mets?

The more sensitive scans are changing the game for identifying mets.
Posted 10/3/2021 5:14 PM (GMT 0)

Glad you updated the scan --- important to stay vigilant.

Part of my "journey" to Mayo Clinic ---usually a couple times each year --- is the updating of scans.

Dr. Kwon orders various scans, on a rotating basis. He emphasizes the importance of updated scans, for cases with complexities. All my scans at Mayo Clinic are shared immediately with my local doctors. I visit them once a month. They occasionally ask me to update a scan, too.

I always say that I am thankful for "two sets of eyes" watching over my case.

Something else I have learned from Dr. Kwon --- each scan is added to one's medical "portfolio" ---- and these images are useful for comparative purposes by the radiology team that assesses the images for our oncologists.

So --- I always remember that there IS inherent value, in every scan --- it shows potential new trouble spots --- but it also reveals resolution of trouble spots, as well! I have experienced both scenarios.

When I was first diagnosed, there was evidence of cancerous nodules "peppered" throughout both my lungs --- a sign that prostate cancer was on the move.

Some months later, an updated scan showed resolution of the lung nodules, as a result of initial treatments. My doctor was THRILLED to show me lung SCARS on the updated scans. The scars showed that the cancerous lung nodules had withered away.

It was a moment of irony I will never forget --- my doctor and I were CELEBRATING the presence of SCARS, because scars signified treatment success!!!

There's where I truly understood the value of updated scans.

Sounds like hernia repair might be in your near future --- a "next step" decision for you and your doctor.

Glad to hear you have an upcoming consultation with your doctor --- keep us in the loop, and you've got compadres here --- rallied and supportive!

A good day ahead ---
CYCLONE --- # Iowa State University
Posted 10/3/2021 6:31 PM (GMT 0)
Best of Luck, Stephen!

Straight Ahead!!!

NJ Fred
Posted 10/4/2021 2:26 AM (GMT 0)
Stephen:
1: I'm sorry this most sensitive scan did not find any cancer for you to treat and
2: I'm glad this most sensitive of scans did not find any cancer for you to deal with. Congratulations, I guess.
Posted 10/4/2021 1:05 PM (GMT 0)
they say your PSA should be above .5 for the Pet Scan to pick up anything.
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