1. < Prostate Cancer

69 years old recent MRI DCE positive PR4

Posted by jck6455 @jck6455, Apr 24 2:24pm

Hi all brand new to this site but have been reading though the posts on here and find there to be a general wealth of knowledge and experience. I know you are not medical "experts" but would like some input on my recent scan.

I had a scan 5 days ago and have yet to hear from my urologist - i recently sent a message.

Basically my summary says DCE Positive PR4, nothing noted outside the prostate. PSA 7.4 and Lesion is 15 mm thin strip. The other finding was 5 "suspicious" pelvic Lymph nodes measuring 7mm.
I assume next step is biopsy.

My reading of other general knowledge tells me to get on it.

Please render your opinion of how bad this may be - I am generally dismayed by the lack of communication. BTW I am in Des Moines.

Jim

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

wellness100 | @wellness100 | Jun 16 5:57am
In reply to @kjacko "My urologist also believed that my 7.8 PSA aligned with the volume of my enlarged prostate..." + (show)
@kjacko

My urologist also believed that my 7.8 PSA aligned with the volume of my enlarged prostate My follow up MRI was clear. However my biopsy showed 2 cores of cancer, one at 3+4. I elected to have an RP. The post RP pathology report showed my cancer was actually at 4+5 and close to the capsule. So far my two follow up PSA blood tests show < 0.01. Praying for more of the same in the future. Bottom line, do everything possible to ensure your results are accurate and give you the information needed to make the best decision and give you some peace of mind. Best wishes!🙏🏻🤞

Jump to this post

May be that is one reason some doctors advocate using PSMA Pet scan with biopsy or even instead of.

REPLY
bens1 | @bens1 | Jun 16 6:26am
In reply to @jck6455 "Hello All, its been about a month since I posted and many things have occurred since..." + (show)
@jck6455

Hello All, its been about a month since I posted and many things have occurred since then. So a bit of a recap-
I "skipped" seeing my Dr for 3 years - a mistake for sure. I went in on another issue and he wanted to run a blood profile which among other things said my cholesterol was too high and my PSA was 8.75 This was up from 4.25 3 years previously. So off to the urologist I went 3 weeks later and my PSA was 7.75 but DRE was indicating a very large prostate.

Had an MRI which showed pRADs 4 lesion plus some suspicious lymph nodes. To top that off I found out that I had something called a pelvic Kidney from birth which means my left kidney sits to the left and above my bladder. I have Chronic Kidney disease stage 2 as well from blood clots during a near death Covid encounter in 2020.

Since then the MRI prompted the Guided Biopsy with 6 of 14 cores positive with one core 4+3=7 at 50% GS 4 which pushed me into unfavorable intermediate risk.
Decipher Score took 2 weeks to arrive and said I was low risk at .41.

Back to my GP to discuss my cholesterol again and ran another PSA, this time 6.95
This was all followed up with a PSMA PET scan with Pylarify. That came back totally clean, I mean nothing even in the prostate!

Had a consult with my urologist then to discuss all this. His concern was due to the size of the prostate (106cc) and the pelvic kidney surgery could be problematic, He did say he would be willing to give it a shot which did not instill confidence in me what so ever. I asked about the PET scan being negative and he said he did understand that either. I said I wanted to talk to an RO and so I got a a referral.

Talked to the RO and he said that because the PET scan was questionable, the questionable lymph nodes remain suspicious. He had no answer for that either but was going back to the radiologists of the MRI and the PET Scan for further definition. The PET scan however showed no change in their size from the MRI 8 weeks previously. My RO feels they may be a non issue but wants to rule them out somehow. So then we had the what if talk, in other words if the lymph nodes were ok. He recommend EBRT with ADT for six months noting that the gland needs to be shrunk, He also mentioned a new procedure to shrink the prostate used mainly for BPH which I have a lot of called PAE or prostate artery embolism that they do. In this procedure they go in with an arterial catheter and place plastic balls in the specific arteries that feed the prostate which causes it to partially die. A 2 hour outpatient procedure. My RO is going to present my case to a group of other oncologists to get their response and recommendations.

So my questions to this community:
Has anyone else had a fully negative PET scan like this in spite of a positive biopsy?
Anyone with experience with the PAE?
Do you think my RO is correct about the treatment plan given the data?
Thanks for wading through all this - lots of great experience here!

I plan on getting a second opinion from Mayo or even move my treatment there.

Jump to this post

I agree with @ozelli. It is worth getting a second opinion through a center of excellence through a telehealth visit and providing your imaging and reports.

REPLY
robertmizek | @robertmizek | Jun 16 9:44am
In reply to @jck6455 "Hello All, its been about a month since I posted and many things have occurred since..." + (show)
@jck6455

Hello All, its been about a month since I posted and many things have occurred since then. So a bit of a recap-
I "skipped" seeing my Dr for 3 years - a mistake for sure. I went in on another issue and he wanted to run a blood profile which among other things said my cholesterol was too high and my PSA was 8.75 This was up from 4.25 3 years previously. So off to the urologist I went 3 weeks later and my PSA was 7.75 but DRE was indicating a very large prostate.

Had an MRI which showed pRADs 4 lesion plus some suspicious lymph nodes. To top that off I found out that I had something called a pelvic Kidney from birth which means my left kidney sits to the left and above my bladder. I have Chronic Kidney disease stage 2 as well from blood clots during a near death Covid encounter in 2020.

Since then the MRI prompted the Guided Biopsy with 6 of 14 cores positive with one core 4+3=7 at 50% GS 4 which pushed me into unfavorable intermediate risk.
Decipher Score took 2 weeks to arrive and said I was low risk at .41.

Back to my GP to discuss my cholesterol again and ran another PSA, this time 6.95
This was all followed up with a PSMA PET scan with Pylarify. That came back totally clean, I mean nothing even in the prostate!

Had a consult with my urologist then to discuss all this. His concern was due to the size of the prostate (106cc) and the pelvic kidney surgery could be problematic, He did say he would be willing to give it a shot which did not instill confidence in me what so ever. I asked about the PET scan being negative and he said he did understand that either. I said I wanted to talk to an RO and so I got a a referral.

Talked to the RO and he said that because the PET scan was questionable, the questionable lymph nodes remain suspicious. He had no answer for that either but was going back to the radiologists of the MRI and the PET Scan for further definition. The PET scan however showed no change in their size from the MRI 8 weeks previously. My RO feels they may be a non issue but wants to rule them out somehow. So then we had the what if talk, in other words if the lymph nodes were ok. He recommend EBRT with ADT for six months noting that the gland needs to be shrunk, He also mentioned a new procedure to shrink the prostate used mainly for BPH which I have a lot of called PAE or prostate artery embolism that they do. In this procedure they go in with an arterial catheter and place plastic balls in the specific arteries that feed the prostate which causes it to partially die. A 2 hour outpatient procedure. My RO is going to present my case to a group of other oncologists to get their response and recommendations.

So my questions to this community:
Has anyone else had a fully negative PET scan like this in spite of a positive biopsy?
Anyone with experience with the PAE?
Do you think my RO is correct about the treatment plan given the data?
Thanks for wading through all this - lots of great experience here!

I plan on getting a second opinion from Mayo or even move my treatment there.

Jump to this post

First of all best wishes for positive outcome on your journey. Based on the information you’ve provided I strongly suggest that you get a second opinion from a center of excellence. There’s too much at stake here and realistically, you’ve got one shot to get it right the first time.

REPLY
mulberry | @mulberry | Jun 16 5:56pm
In reply to @jck6455 "Hello All, its been about a month since I posted and many things have occurred since..." + (show)
@jck6455

Hello All, its been about a month since I posted and many things have occurred since then. So a bit of a recap-
I "skipped" seeing my Dr for 3 years - a mistake for sure. I went in on another issue and he wanted to run a blood profile which among other things said my cholesterol was too high and my PSA was 8.75 This was up from 4.25 3 years previously. So off to the urologist I went 3 weeks later and my PSA was 7.75 but DRE was indicating a very large prostate.

Had an MRI which showed pRADs 4 lesion plus some suspicious lymph nodes. To top that off I found out that I had something called a pelvic Kidney from birth which means my left kidney sits to the left and above my bladder. I have Chronic Kidney disease stage 2 as well from blood clots during a near death Covid encounter in 2020.

Since then the MRI prompted the Guided Biopsy with 6 of 14 cores positive with one core 4+3=7 at 50% GS 4 which pushed me into unfavorable intermediate risk.
Decipher Score took 2 weeks to arrive and said I was low risk at .41.

Back to my GP to discuss my cholesterol again and ran another PSA, this time 6.95
This was all followed up with a PSMA PET scan with Pylarify. That came back totally clean, I mean nothing even in the prostate!

Had a consult with my urologist then to discuss all this. His concern was due to the size of the prostate (106cc) and the pelvic kidney surgery could be problematic, He did say he would be willing to give it a shot which did not instill confidence in me what so ever. I asked about the PET scan being negative and he said he did understand that either. I said I wanted to talk to an RO and so I got a a referral.

Talked to the RO and he said that because the PET scan was questionable, the questionable lymph nodes remain suspicious. He had no answer for that either but was going back to the radiologists of the MRI and the PET Scan for further definition. The PET scan however showed no change in their size from the MRI 8 weeks previously. My RO feels they may be a non issue but wants to rule them out somehow. So then we had the what if talk, in other words if the lymph nodes were ok. He recommend EBRT with ADT for six months noting that the gland needs to be shrunk, He also mentioned a new procedure to shrink the prostate used mainly for BPH which I have a lot of called PAE or prostate artery embolism that they do. In this procedure they go in with an arterial catheter and place plastic balls in the specific arteries that feed the prostate which causes it to partially die. A 2 hour outpatient procedure. My RO is going to present my case to a group of other oncologists to get their response and recommendations.

So my questions to this community:
Has anyone else had a fully negative PET scan like this in spite of a positive biopsy?
Anyone with experience with the PAE?
Do you think my RO is correct about the treatment plan given the data?
Thanks for wading through all this - lots of great experience here!

I plan on getting a second opinion from Mayo or even move my treatment there.

Jump to this post

Yes, I had a fully negative PSMA-PET (F18 Plarify) scan even after biopsy ( Favorable Intermediate Risk (3 + 4=7).
It blew my mind that the PET scan couldn't even visualize the presence of known, biopsied cancer tissue.
My RO and Urologist's responses set my mind more at ease:
1) RO said- There are Micro and Macro cancers. The Micro is at a cellular level and too small to be visualized. When there are enough of the cells congregated together then they can be visualized. So, for example, there might be enough micro cells to show up in a PSA test but not on enough to be visualized on PSMA-PET scan.
2) UROLOGIST said- He agreed with the RO plus he added that because the bladder is so close to the prostate and my bladder was not fully emptied during imaging, the urine lights upand effectively blocks the cancer cells from being visible. At the time, I had BPH and, even after peeing just before the scan, there was a lot of urine left in my bladder. He showed me the images and convinced me that it wasn't just a botched PSMA-PET scan.

So I guess I just had unrealistic expectations of the PSMA-PET scan capability. It is hyped up a lot in Dr Walsh's book and elsewhere but I don't remember seeing anything about this.

Regarding your question about PAE, I also looked into it when I was focused only on BPH (before my biopsy) and it wasn't offered by my medical provider. Also, I seem to recall that PAE (and some other BPH treatments) are not prescribed after cancer is diagnosed. Maybe others here can chime in on that. Now, 5 weeks out from RP, I have no BPH worries :>)

Hope this is helpful!

REPLY
retireddoc | @retireddoc | Jun 17 10:12am

When you say "scan", are you referring to PET or a MRI? I would assume PET?

REPLY
jck6455 | @jck6455 | Jun 17 2:11pm

I was referring to my PSMA PET scan with Pylarify. I think that mulberry is correct- I have a very large prostate (106cc) and really dont get my bladder empty. I am waiting on my RO to respond, but surprised he didn't know this.

REPLY
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