PET/PSMA / Decipher test results back (0.69). Radiation/hormone now.

Posted by greg52 @greg52, Aug 23 8:26pm

Well. Was diagnosed with PC back in Oct of last year (53 year old).
My numbers are/were Gleason 7, Stage 2, PSA 8.8, so intermediate risk prostate cancer.
From posting here with my initial diagnosis of PC to now, after researching, weighing my treatment options, and just dealing with the other aspects of life, I finally decided on radiation rather than surgery. So had a PET/PSMA scan a few weeks ago and sample sent in for decipher test. I just got the results of a PSMA/PET scan and Decipher test. While the decipher test is not part of the normal process, I was hoping that results might show a less aggressive type of cancer that might possibly allow me to just have the radiation and forgo the hormone therapy. Unfortunately, even though the PET/PSMA did not show any spread outside the prostate, it is right up against the rectum, and apparently a decipher score of 0.69 is also considered high. So now I will need to start hormone therapy with radiation and possibly some additional drugs for treatment.
It seems that even though my docs advised that I could take my time making a decision on treatment ("Take weeks, months, but not years"), now, based on these latest test results, there seems to be more urgency for treatment. Can't believe it's been over 10 months since my initial diagnosis. Just hoping I didn't take too long to get all these additional tests and decide and put the success of my treatment at risk. I think just an inability to make a decision (surgery vs radiation) and life distracted me.
Interested what others might have to say. Just got off the phone with my doc so just processing the reality of starting treatment as soon as next week and the recent urgency that was conveyed from my oncologist to start treatment.

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

@greg52

I actually was going to have the SpaceOAR procedure before my radiation. But after the PET/PSMA stating,

"There is relatively focal increased Pylarify activity within the left inferior, posterolateral prostate gland, best appreciated on PET images 43-46 (SUV 5.6). This focus is in close proximity to the left anterior rectal wall, with invasion into the rectum difficult to entirely exclude."

My doc recommended against the SpaceOAR. Even though it sounded like a good extra precaution to take, he did not seem concerned with me NOT having the SpaceOAR as this type of cancer has been successfully treated for years without SpaceOAR with minimal to no impact to rectum (apparently) so I'm trusting him on that. And the fact that it is so close to the rectum with spread to the rectum not completely ruled out by the PET scan.
As a 53 year old, surgery does seem to be the traditional recommended treatment. But based on my research, and the fact that I really connected with the Oncology doc, it seems that the main reason more younger PC patients opt for surgery is based on the potential side effects of radiation "down the road". But with the modern and more accurate radiation methods, it is less of a concern. And a lot of people just want the cancer out and would rather come in one day and have it removed than come in for consecutive days of radiation over several days/weeks because they can't. For me, being semi-retired and caring for my senior parents who live in my home, going in Mon through Fri for 5 1/2 weeks to get a 30min radiation treatment in the morning will have minimal impact on my life.

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Some radiation oncologist just don’t believe in spacer technology.

Some oncologist believe in it and actually do the spacer insertion in order to get it done ‘better” than a urologist doing it. A lot of personal preference in that area.

Six years after radiation, I started having some incontinence problems. The problems don’t always show up right away after radiation.

Have you considered talking to a different radiation oncologist to see if there is a difference of opinion.

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I know multiple opinions is advised. The problem is, when each has a different opinion, who do you listen to?
I get several different recommendations here from people who have had multiple second and third opinions based on their individual diagnosis. And at the end of the day, getting additional opinions from multiple specialists may really be the best way to determine best course of action for my individual diagnosis. But my Oncologist is my age, seems sincerely invested with me and my care/outcome. I trust that he knows more than me and is "doing what he would do" if in the same situation. I did not get that sense with the surgeon that would have done my RARP. There's always the possibility that my oncologist is advising me more for his own personal financial gain than what might be best. But at this point, any further research/second opinions would further delay treatment and may have a more negative impact than choice of treatment. I could be wrong though.
I will have one more discussion with my oncologist based on the recent PET/decipher results before I move forward with my treatment which/along with hormone treatment, is supposed to start as soon as next week. One thing I DIDN'T ask him because I was just processing all the new information. Would surgery or a different course of treatment make more sense based on the PET/decipher results?
Again, I trust that if that WE'RE the case, he would have offered that up when we talked.

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@jeffmarc

I am puzzled by this response. The use of a spacer is to protect the rectum. He’s a quick explanation of why it’s used.

You'll get a rectal spacer called SpaceOAR™ hydrogel. It is a gel that's placed between your prostate and rectum to move your rectum away from your prostate. This protects your rectum from radiation and reduces some side effects of radiation therapy.

Where did you get the information that a spacer is not good to use when the cancer is in the prostate near the rectum?

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Thanks. I am well aware of the use and purpose of a rectal spacer as it relates to EBRT. There is concern if the cancer approximates the rectal wall, and contraindication if the cancer in fact has extraprostatic extension.

NCCN Guidelines Version 1.2024, PRINCIPLES OF RADIATION THERAPY
"........Patients with grossly apparent posterior extraprostatic
extension should not undergo perirectal spacer implantation. Marginal or
suspected early extension is not a clear contraindication......"

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@greg52

I know multiple opinions is advised. The problem is, when each has a different opinion, who do you listen to?
I get several different recommendations here from people who have had multiple second and third opinions based on their individual diagnosis. And at the end of the day, getting additional opinions from multiple specialists may really be the best way to determine best course of action for my individual diagnosis. But my Oncologist is my age, seems sincerely invested with me and my care/outcome. I trust that he knows more than me and is "doing what he would do" if in the same situation. I did not get that sense with the surgeon that would have done my RARP. There's always the possibility that my oncologist is advising me more for his own personal financial gain than what might be best. But at this point, any further research/second opinions would further delay treatment and may have a more negative impact than choice of treatment. I could be wrong though.
I will have one more discussion with my oncologist based on the recent PET/decipher results before I move forward with my treatment which/along with hormone treatment, is supposed to start as soon as next week. One thing I DIDN'T ask him because I was just processing all the new information. Would surgery or a different course of treatment make more sense based on the PET/decipher results?
Again, I trust that if that WE'RE the case, he would have offered that up when we talked.

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Yes, Greg, please DO ask him about the proximity of the PCa to the rectum and if surgery would be more advisable in your case.
I totally get the trust/comfort/ age thing! But not all older, more experienced practitioners are didactic, stubborn and set in their ways. Most of the really valuable info you get on the web videos are from men in their late 60’s and up….they’ve been around the block a time or two.
Also, even though no one can tell us to ‘not hurry’ when we are filled with anxiety, please know that the ADT is an extremely powerful tool and being on it gives you room to find the answers you really need…Best

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@greg52

I know multiple opinions is advised. The problem is, when each has a different opinion, who do you listen to?
I get several different recommendations here from people who have had multiple second and third opinions based on their individual diagnosis. And at the end of the day, getting additional opinions from multiple specialists may really be the best way to determine best course of action for my individual diagnosis. But my Oncologist is my age, seems sincerely invested with me and my care/outcome. I trust that he knows more than me and is "doing what he would do" if in the same situation. I did not get that sense with the surgeon that would have done my RARP. There's always the possibility that my oncologist is advising me more for his own personal financial gain than what might be best. But at this point, any further research/second opinions would further delay treatment and may have a more negative impact than choice of treatment. I could be wrong though.
I will have one more discussion with my oncologist based on the recent PET/decipher results before I move forward with my treatment which/along with hormone treatment, is supposed to start as soon as next week. One thing I DIDN'T ask him because I was just processing all the new information. Would surgery or a different course of treatment make more sense based on the PET/decipher results?
Again, I trust that if that WE'RE the case, he would have offered that up when we talked.

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@greg52, just checking in. How is the information and opinion gathering going? Any decisions made with your care team? How are you doing?

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@colleenyoung

@greg52, just checking in. How is the information and opinion gathering going? Any decisions made with your care team? How are you doing?

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Based on my last discussion with my radiology oncologist, we are moving forward with hormone and radiation treatment. Got my first 3 month Lupron infusion on 9/3 and also started the 50mg daily Bicalutamide. Had my simulation appointment on 9/4 and got "marked up". Will likely begin radiation treatment next week.

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Hi all..Im 71 .....My PSA has been climbing slightly higher for the past 7 years. It began around 4+ and now, fir the past few years is hovering between 9.2 and 10.8...May of 2022 I was diagnosed with prostate cancer and a boipsy was performed. The results were a Gleason score of 6....lowest....So, at that time, we, my Urologist and family, decided to monitor my PSA every three months. It has been holding steady, again, between the above values I mentioned.
Two weeks ago I had a second biopsy, a focal biopsy, and the results were equal to the first...7 out of 13 tested areas showed signs of cancer...So the cancer is holding steady...not growing and/or spreading. At a recent appointment with my Urologist, to discuss the biopsy results, I mentioned my almost daily concern about it spreading into the nearby lymphnodes and metastisising..is that a word..haha...I increasingly anxious about that happening. We then discussed options...removing the prostate and /or radiation. He discussed with me the effects of both...With the removal it was reduced sexual performance or none along with urine leakage...With radiation it was 4 to 6 months of hormone shots, to reduce the size of the prostate prior to radiation and the effects of the shots.
Are the hormone shots necessary prior to radiation...Are there radiation treatments that can be performed with on an enlarged prostate and not have the hormone shots...What are the types of radiation treatments that are available to treat my low level prostate cancer??????

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I am one year out from my prostate removal. My operation did not get good margins so I am monitoring my PSA every 3 months.. So far my PSA has stayed at less than .05. However I asked for a decipher test which just came back at .89. Any suggestions on whether I should be starting chemo or proton therapy given this latest set back? My oncologist is less than helpful.

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@tstump12

I am one year out from my prostate removal. My operation did not get good margins so I am monitoring my PSA every 3 months.. So far my PSA has stayed at less than .05. However I asked for a decipher test which just came back at .89. Any suggestions on whether I should be starting chemo or proton therapy given this latest set back? My oncologist is less than helpful.

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I would consider a second opinion.

The Decipher test is a genomic test that analyzes the activity of 22 genes in prostate tumors to help predict the risk of prostate cancer spreading and death. The test calculates a score between 0 and 1, with higher scores indicating a higher risk of metastasis:
Low: Scores below 0.45
Intermediate: Scores between 0.45 and 0.6
High: Scores above 0.6

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@bolovino

Hi all..Im 71 .....My PSA has been climbing slightly higher for the past 7 years. It began around 4+ and now, fir the past few years is hovering between 9.2 and 10.8...May of 2022 I was diagnosed with prostate cancer and a boipsy was performed. The results were a Gleason score of 6....lowest....So, at that time, we, my Urologist and family, decided to monitor my PSA every three months. It has been holding steady, again, between the above values I mentioned.
Two weeks ago I had a second biopsy, a focal biopsy, and the results were equal to the first...7 out of 13 tested areas showed signs of cancer...So the cancer is holding steady...not growing and/or spreading. At a recent appointment with my Urologist, to discuss the biopsy results, I mentioned my almost daily concern about it spreading into the nearby lymphnodes and metastisising..is that a word..haha...I increasingly anxious about that happening. We then discussed options...removing the prostate and /or radiation. He discussed with me the effects of both...With the removal it was reduced sexual performance or none along with urine leakage...With radiation it was 4 to 6 months of hormone shots, to reduce the size of the prostate prior to radiation and the effects of the shots.
Are the hormone shots necessary prior to radiation...Are there radiation treatments that can be performed with on an enlarged prostate and not have the hormone shots...What are the types of radiation treatments that are available to treat my low level prostate cancer??????

Jump to this post

You are a Gleason six. You really don’t want to do anything now. You could have them check your PSA every month, but that’s not normal with a Gleason six every three months is the standard, and if something comes up, it isn’t going to be horrible since you caught it early

Both radiation and surgery are worse than what you have now. If you don’t have hormone therapy after radiation, the cancer can come back sooner vs never. After surgery you usually can’t get an erection.

You need to find a user group where they discuss active surveillance. Some people stay on it for many many years without the cancer ever getting active. Check out Ancan.org for an active surveillance group that meets online. They’re not the only one there are others. Talking with other people and similar situations can relieve your anxiety.

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