How is PSMA PET scan being used in yo... - Advanced Prostate...

Advanced Prostate Cancer

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How is PSMA PET scan being used in your experience?

DenDoc profile image
38 Replies

PSMA PET scans are not yet available in my area. My MO and I have been in discussions on the use of PSMA versus the FDG PET I currently get. Have extensive metastatic disease in my left pleura, nodes in my mediastinum and along the aorta. To date no skeletal lesions but one area of suspicion.

My MO contends that PSMA PET is limited to those who are looking for spread in the prostate bed, pelvis, immediate nodes, but not intended for routine follow-up and monitoring for widespread disease. He feels that FDG imaging has been sensitive enough to follow any changes in my disease process and is not motivated to send me elsewhere for a PSMA PET since he does not think it would change my current treatment which is Lupron and Zytiga/pred with a PSA that rose and plateaued at about 18.

For those with PSMA PET in your local area, are you being followed now by that scan as opposed to the other options? Does anyone get bone scans anymore?

I am 80 years old and have had PC for 27 years. I am not looking for any curative therapy but wanting to keep the cancer in check so I can enjoy my remaining time without treatments that will make me miserable.

38 Replies
JamesAtlanta profile image
JamesAtlanta

Hi there! You are an amazing warrior to fight PCA for 27-years! Makes my almost 7 years seem paltry.

I have had 3 PSMA PET scans in the last year. My PSA started to rise from undetectable. The purpose of the scan was to find where the cancer was early so that they could treat the site. I am oligometastatic - the only two places my cancer has ever been found on a scan was the prostate itself and one spot in my spine that was radiated in 2015. My prostate was removed in 2018.

The first scan did not detect the presence of PCA, but the second scan 6-months later did. That’s when my PSA has quickly risen from 0.2 to 3.7 in about 10-weeks. (I had been undetectable for 3 1/2 years … and on a “holiday” from ADT for 18-months.)

They found a small spot in my left iliac (hip). I immediately restarted ADT (Orgovyx + Erleada). After 12-weeks on that, they ran another PSMA PET scan and the lesion has “shrunk” … which confirmed to them it was indeed PCA.

I just started 3 rounds of radiation at MD Anderson this week.

So, in my case, a PSMA PET scan served 2 purposes. First, it is able to detect PCA early and anywhere in my body. Second, it was used to change your treatment plan.

But, if there are known metastases in multiple places … and knowing that there might be a few other metastases in other places is not going to change a treatment plan, then a PSMA PET scan capability likely won’t make a difference worth traveling for.

That said, they are adding sites that offer this scan rapidly across the country. So, access to the test may be available to you soon. Just check the website. I had my first test at UCLA Medical Center. My second was at MD Anderson. And I checked recently and can even have the scan in my hometown of Atlanta now. All that in less than a year.

Long winded…sorry for that. Keep up the fight - 27-years is an inspiration to us all!

Best wishes,

James

DenDoc profile image
DenDoc in reply to JamesAtlanta

James, thanks for your reply. You echo exactly what my oncologist is saying “we know you have many Mets so it will not change therapy. I am a retired pediatrician so I have a large appetite for knowledge and sometimes get impatient. My care has been excellent and even though I was told to “get my affairs together” 4+ years ago, I have survived, gotten through more treatments and have a fairly good QOL. Still can enjoy my family, some travel and be active in my community.

DarkEnergy profile image
DarkEnergy in reply to JamesAtlanta

Hi James,

Similar experience with PSMA PET scan, but prior traditional scans resulted in notes that included "significant metastasis in vertebrae.." write ups. So, radiation treatment was not an option!

Consequently, a biopsy of a vertebrae (largest) spot was performed and guess what? Findings: no cancer was found.

Well, fast forward, PSMA would have spared the risk of having a needle hammered into my spine. I'm Oligometastatic, meaning just a few PCa distant tumors are located.

Now, I'm getting PSMA targeted radiation treatment, it's a great feeling that we're killing the cancer, as oppose to putting it to sleep for some time...

Longterm101 profile image
Longterm101 in reply to JamesAtlanta

Did ur insurance cover the scan? I have to self pay and it’s costing my $5800

I live in northern va.

Tall_Allen profile image
Tall_Allen

I agree with your MO. A diagnostic tool is worthless if you cannot use it to potentially change your therapy. Right now, there is nothing you would do because of finding more metastases. However, when Lu177PSMA617 becomes available, it will be important to know if the same metastases are PSMA-avid. At that time, it will be a good idea to get both kinds of PET scans.

DenDoc profile image
DenDoc in reply to Tall_Allen

TA, You are my most respected responder on this site. You have nailed the thinking of my MO who has bailed me out of some dire straights in the past. My tumor has become mixed, Small Cell and Adenocarcinoma so we are never sure which cell line is acting up. With the increase in PSA last year, likely it is the adenocarcinoma. My concern about skeletal Mets is if it will limit my ability a lot. My wife has dementia and in the past year, I have added a new title, Caregiver. She is totally dependent on me and so I need to stay able to drive, plan, arrange, finance, etc. My oncologist knows this and so he tries to spare me from some treatments that might give me bigger side effects.

We are in Denver and it seems like they are not very eager to get the PSMA PET up and runnning here. Two private clinics offer it. I am a retired Kaiser physician and I think it will be a while before KP internalizes it. I could push for a referral to a KP clinic in California and pay my travel but my MO still feels he would not change anything right now.

Bob

AlanMeyer profile image
AlanMeyer in reply to DenDoc

Hello DenDoc,

I have nothing to add to what has already been said about your cancer treatment, but I would like to wish you the very best of luck in both the cancer and the care you are providing to your wife. I know what you are going through and hope that your wife is able to maintain her love and appreciation of you in spite of declining cognition, and that you are able either to see her through or able to find another good caregiver when your time comes.

Best of luck.

Alan

DenDoc profile image
DenDoc in reply to AlanMeyer

I can use MAID if I get to that point. Unfortunately, people with dementia do not have that choice. Very sad to watch. Palliative Care team has been great.

Tall_Allen profile image
Tall_Allen in reply to DenDoc

If you want to know about bone metastases, then NaF18 PET is twice as sensitive as PSMA. But it will not help you to know about every last little met there is. If any become painful, they can be zapped with radiation in a single treatment. Xofigo is also good at relieving bone pain.

DenDoc profile image
DenDoc in reply to Tall_Allen

Thanks

Karmaji profile image
Karmaji in reply to Tall_Allen

Dear TAI had Choline pet scan...nothing visible...in feb 2022

2 years ago Choline showed 2 tiny spots on pelvis

and bone scan did not show anything....

had RT on these spots and a month later nothing on Choline dec 2019

I am 82 with Psa <0.006 since 2 years and going off Luperon after 3 years..

Do u think I should have PSMA scan and also CTC blood test

many thanks

Tall_Allen profile image
Tall_Allen in reply to Karmaji

No-it will show nothing at your PSA.

Karmaji profile image
Karmaji in reply to Tall_Allen

Thanks

If I understand

no use doing psma

Concerned-wife profile image
Concerned-wife in reply to DenDoc

So sorry that you have so much to deal with. I love your profile picture and hope that is a son who can help you.

DenDoc profile image
DenDoc in reply to Concerned-wife

Thanks. That is a guide who takes me fishing. I have a great family with 2 married kids and 4 grandkids here in the area. Our pediatrician daughter has really risen to the occasion. I have coffee with her weekly and she hosts a family dinner as often as we can get them all together. We can no longer be the entertainment center and the local kids have stepped up to help in any way they can. We are glad to remain independent but know that they are there if needed.

Rocketman1960 profile image
Rocketman1960 in reply to DenDoc

I just had PSMA PET done at Kaiser Roseville CA. Will use the results to target treatment at 2 places in the lymphatic system. RO visit 3 weeks out.

DenDoc profile image
DenDoc in reply to Rocketman1960

Great. Hope they can get it. Best when it is small.

Rocketman1960 profile image
Rocketman1960 in reply to DenDoc

Me too! both under 1 cm. so they should have no problem.

Shooter1 profile image
Shooter1

Probably won't change your treatment, so not worthwhile. Yes bone scans are still common in my are. My CT and Bone scans were compared and read together to see new mets. One was missed on CT until reread by reader. Last year my CT and bone scans were clear but very quickly rising PSA... Went to nearest hosp. with Na-F18 scan and bone mets popped out and were irradiated so it did change my treatment. . 7 mo.. more of this journey without pain which is now back with new mets... Life Is Good but a scan that won't change treatment is not.

DenDoc profile image
DenDoc in reply to Shooter1

You are so right. I just get anxious and sometimes have the cart before the horse. Patience is a virtue I sometimes forget.

j-o-h-n profile image
j-o-h-n

27 years!!! Lets go for 37....God Bless your wife and God Bless you....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/24/2022 10:18 PM EST

DenDoc profile image
DenDoc in reply to j-o-h-n

Thanks. Steve Jobs once said, “Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

Muffin2019 profile image
Muffin2019

Wow, 27 years is great and gives hope and encouragement to all on here.

GeorgeGlass profile image
GeorgeGlass in reply to Muffin2019

I agree. It’s great to see people live for decades with apc. Doc has a Gleason 6 though, so it’s much more survivable for many years, compared to psa 8-10

DenDoc profile image
DenDoc in reply to GeorgeGlass

George, You are right, it was a Gleason 6 27 years ago. The issue at that time was that PSA was not being recommended for screening so I was getting an annual rectal exam. My internist felt a nodule and sent me for a biopsy. Initial PSA was 11.8 and plugging that into existing nomograms showed that I had a 40% chance that the PC had already spread outside the capsule.(Clearly it had in retrospect) So all that local radiation did not stop the cells that had escaped. This tumor has never been predictable. At 14 years it appeared in a mediastinal node and I had widespread micromets on the pleura of my left lung discovered at surgery.

Long term ADT with Lupron has caused it to become castrate resistant so I have had Provenge, Enzalutamide and now abiraterone. You can only fool a cancer for so long before it finds a way to change. Some of it morphed into a small cell cancer and caused huge pleural tumors and significant Pleural effusions(many liters).

So for a tumor that graded out a Gleason 6, this has been quite a lot of disease. One wonders if it was read correctly or the biopsy in that era missed some higher grade cells.

None of it matters since we have to deal with what cards we are dealt.

Bob

GeorgeGlass profile image
GeorgeGlass in reply to DenDoc

Understand Bob. You clearly see it for what it is. You've fought the war effectively and I hope you continue to be successful for a couple more decades. What hospital do you get your advice and treatment? What side effects have you had from the xtandi and zytiga?George

DenDoc profile image
DenDoc in reply to GeorgeGlass

George,I am a retired Kaiser Pediatrician in Denver so all of my care comes through Kaiser. I have a very bright, compassionate oncologist who while he is not a urologic oncologist, seems to be on top of everything.

At one point, when the Mets were found on my pleura, I was unsure about my treatment plan so I went to the University of Colorado Medical Center where they have a GU Cancer clinic for a second opinion. They helped move me toward more active treatment at KP with some very specific recommendations. I was seen by Dr. Mike Glode who has retired but stays very active. He writes a blog post for patients that is great reading. It is entitled prost8blog.

Xtandi gave me nausea until I tried taking it with food. A little fatigue but very tolerable. I have lots of other reasons for fatigue including age so it was not a big deal.

Zytiga has been very easy to deal with. I take it an hour before breakfast and tolerate it well. I recently had a cataract repair and my intraocular pressures are up. Ophthalmologist says it could be the low dose of prednisone that I take with Zytiga. More likely it is related to bilateral retinal tears 31 years ago that left debris in the vitreous of my eyes. I have a lot of urge incontinence that became worse when I started Zytiga but likely it is due to all the tissue damage my urinary tract has sustained from radiation and manipulations.

I worked for 20 years at KP without ever taking a sick day. Very healthy and very active. Now I am a Frequent Flyer!!!!

GeorgeGlass profile image
GeorgeGlass in reply to DenDoc

Very interesting journey with the cancer. You’re doing great. What dose of prednisone do you take with the zytiga?George

DenDoc profile image
DenDoc in reply to GeorgeGlass

5mg twice daily.

Grumpyswife profile image
Grumpyswife in reply to DenDoc

My husband's history is very similar to yours. Up until last week he was taking a combination of abiraterone with 5 mg of prednisone along with darolutatide. This was recommended by Dr. Luke of Omaha as a bridge until Lutetium is approved. He stopped those before chemo next week.

Perhaps you could reduce the prednisone to 5 mg to see if that might alleviate some of the eye problems.

Also, my husband developed urge incontinence while on Xtandi. He had previously tried Mybetriq to no avail. A new urologist explained that he should stay on it for at least 40 days as it took that long to be effective. Amazingly, it is working for him two years later! He is now down to using one diaper/day to catch random drips.

dhccpa profile image
dhccpa

Good question. Rightly or wrongly, many docs seem to still rely mostly or solely on CT scans or nuclear bone scans to monitor metastatic patients. I base that on replies I've gotten to a similar question on various forums.

20PeteG16 profile image
20PeteG16

God bless you DenDoc and your dear spouse. Thank you Tall_Allen and all who respond to others with such heart felt support.

Last week I had my first PSMA at the Medical University of SC. the primary investigator at MUSC requested my local oncologist order the scan to determine if i was eligible for a clinical trail there after the recent failure of Abiraterone. So I writing to say in my case PSMA as a qualifier for a clinical trial.

PeteG

Bobcat64 profile image
Bobcat64 in reply to 20PeteG16

Just curious. I m in TN but plan to return to SC on near future. Who is your MO and where is he located. I will be in Hilton Head. Thanks

DenDoc profile image
DenDoc in reply to Bobcat64

I am in Denver. I am a Kaiser retiree so all my care is at Kaiser. My MO is a very young Dr. Ben Scheier but he only see Kaiser patients.

Fitzbruce1 profile image
Fitzbruce1

I have had several bone scans over the last 3.5 years. They don’t look pretty. But I believe that many of the spots are from past injuries. I have had 5 broken clavicles, broken jaw, broken arm, leg, fingers, 3 shoulder operations, 3 knee surgeries, a total knee replacement, etc. My hospital just got a PSMA machine n I am on the list for a scan. I think it will be informative to see what spots are cancer and which ones are memories of some of my past exploits.

j-o-h-n profile image
j-o-h-n in reply to Fitzbruce1

To FB1,

You either were a bouncer in a NYC club..... or you had some pretty tough wives.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/25/2022 5:33 PM EST

Grumpyswife profile image
Grumpyswife

I see that there is a trial in Colorado for a new drug called phosplatin. The trial is in Aurora, Colorado and I am not sure if that is convenient for you or with Kaiser.

DenDoc profile image
DenDoc in reply to Grumpyswife

Thanks for sharing. It is at the CU Medical Center. My MO doesn’t feel like we have run out of options yet. He is also a CU grad so he would know about it.

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