BCR Analyzation; < Age 60

Posted by Dave @cedard, Feb 21 2:58pm

50 year old: 3/04/2019 PSA = 4.45
**Note** Was on Testosterone Therapy from age 40-50**

Currently 55 years old:
7/12/2019: Davinci Prostatectomy, Gleason 3+4, no positive margins, and no radiation.

Surgical Pathology Report:
7/12/2019: 2.4 cm. Grade group 2. Left posterolateral extension. Surgical margins and seminal vesicles are free, Stage pT3aN0

PSA trending >.02
4/11/2022 = .06 ***4/28/2023 = .13*** 5/19/2023 = < .1***7/25/2023 = .19***10/15/2023 = .18***01/15/2024 = .21

Urologist: States would not do anything until hits .4 thru .8. I do not have a genitourinary oncologist, radiologist, or oncologist.
Researching Phase: Understand not considered a reoccurrence until >.2 for (two) tests in a row but not trending in right direction.

My impression: Looking like a BCR. Urologist states I'm young enough to suffer side effects from radiation toxicity, unsure if waiting from .4-.8 is a good idea, realize PSMA test is better at detecting at higher levels, but understand sweet zone for radiation is between .2-.5?, hormone therapy seems like putting a Band-Aid on things. Looking for more input for possible treatment consideration. Will likely seek a second opinion.

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

@cedard

Thank you for the info.

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Great webinar! Thanks!

REPLY

My two cents, fellow member of this darn club, layman, 10 years...

The question to consider asking is:

Would waiting to image change the treatment plan?
Would waiting to image change my risk, spread of my PCa.

Generally, SRT earlier is better...here's my question:

When you say SRT, do you mean to the prostate bed only or are you including whole PLN and perhaps short term ADT, say six-twelve months. I ask, because SRT to the prostate bed only is generally not the standard of care for BCR today. I would read through the NCCN guidelines...

You indicate your pathology report said GS 3+4 which puts you in Grade Group 2..

In recent years, healthcare providers have realized that the Gleason score might not always be the best way to grade PCa. For instance, not all cancers with a GS of 7 are the same. Cancers with more grade 3 areas (3 + 4 = 7 GS) are less likely to grow and spread than cancers with more grade 4 areas (4 + 3 = 7 GS). Likewise, Gleason score 8 cancers are less likely to grow and spread than cancers with a GS of 9 or 10.
Based on these differences, healthcare providers have started to use a newer system that breaks up PCas into 5 grade groups:
• Grade group 1 = Gleason 6 (or less)
• Grade group 2 = Gleason 3 + 4 = 7
• Grade group 3 = Gleason 4 + 3 = 7
• Grade group 4 = Gleason 8
• Grade group 5 = Gleason 9 or 10

As to your urologist statement that you are young and may experience radiation toxicity, he is not wrong, but...I'm going to throw the BS penalty flag here. Attached is my clinical history. I've had radiation treatment three different times over my 10 years, 69 total treatments, nada...why, advances in imagery, treatment planning software and delivery. I've said this before I've sat down with my radiologist, the same one during my journey, she's shown me the software, the hardware, it's pretty impressive.

ADT is not "putting a bandaid on things," do a literature search on micro-metastatic PCa, just because imaging doesn't see it, doesn't mean it's not there!

There are divergent views on curing PCa once it's spread, some say it's possible, others say no, you manage it as a chronic disease. In my case, definitely the latter. When I had my BCR in December 2015, my urologist and radiologist wanted to do SRT to the prostate bed, the SOC. I asked about data emerging from CTs and from Mayo that more often than not, the PCa had spread beyond the prostate bed after surgery and was in the PLNs, therefore SRT should include the PLNs and shorty term ADT. I said given my GS and short time to BCR, should we do that, their answer, no, there wasn't long term data to support that. Well, 90 days after competing my SRT, my radiologist turnd from her screen after seeing my PSA results and said "that didn't work, what do you want to do next! As you can see from my chart, it was in the PLNs, we just didn't have the imaging at that time to see it, today we do! I assure you, that was the last time I let my medical team talk me out of a treatment decision!

So, yes, your PSA does seem to indicate BCR, a treatment decision may be needed, question is, when to pull the trigger and with what. The good news, you have choices, many, the "not so good news, you have choices, many...!

Here's a interesting and possibly relevant study - https://www.urotoday.com/conference-highlights/asco-gu-2023/asco-gu-2023-prostate-cancer/142438-asco-gu-2023-tps402-phase-iii-study-of-local-or-systemic-therapy-intensification-directed-by-pet-in-prostate-cancer-patients-with-post-prostatectomy-biochemical-recurrence-indicate-ec?utm_source=newsletter_12613&utm_medium=email&utm_campaign=design-access-and-consensus-criteria-in-gu-clinical-trials

Kevin

REPLY
@kujhawk1978

My two cents, fellow member of this darn club, layman, 10 years...

The question to consider asking is:

Would waiting to image change the treatment plan?
Would waiting to image change my risk, spread of my PCa.

Generally, SRT earlier is better...here's my question:

When you say SRT, do you mean to the prostate bed only or are you including whole PLN and perhaps short term ADT, say six-twelve months. I ask, because SRT to the prostate bed only is generally not the standard of care for BCR today. I would read through the NCCN guidelines...

You indicate your pathology report said GS 3+4 which puts you in Grade Group 2..

In recent years, healthcare providers have realized that the Gleason score might not always be the best way to grade PCa. For instance, not all cancers with a GS of 7 are the same. Cancers with more grade 3 areas (3 + 4 = 7 GS) are less likely to grow and spread than cancers with more grade 4 areas (4 + 3 = 7 GS). Likewise, Gleason score 8 cancers are less likely to grow and spread than cancers with a GS of 9 or 10.
Based on these differences, healthcare providers have started to use a newer system that breaks up PCas into 5 grade groups:
• Grade group 1 = Gleason 6 (or less)
• Grade group 2 = Gleason 3 + 4 = 7
• Grade group 3 = Gleason 4 + 3 = 7
• Grade group 4 = Gleason 8
• Grade group 5 = Gleason 9 or 10

As to your urologist statement that you are young and may experience radiation toxicity, he is not wrong, but...I'm going to throw the BS penalty flag here. Attached is my clinical history. I've had radiation treatment three different times over my 10 years, 69 total treatments, nada...why, advances in imagery, treatment planning software and delivery. I've said this before I've sat down with my radiologist, the same one during my journey, she's shown me the software, the hardware, it's pretty impressive.

ADT is not "putting a bandaid on things," do a literature search on micro-metastatic PCa, just because imaging doesn't see it, doesn't mean it's not there!

There are divergent views on curing PCa once it's spread, some say it's possible, others say no, you manage it as a chronic disease. In my case, definitely the latter. When I had my BCR in December 2015, my urologist and radiologist wanted to do SRT to the prostate bed, the SOC. I asked about data emerging from CTs and from Mayo that more often than not, the PCa had spread beyond the prostate bed after surgery and was in the PLNs, therefore SRT should include the PLNs and shorty term ADT. I said given my GS and short time to BCR, should we do that, their answer, no, there wasn't long term data to support that. Well, 90 days after competing my SRT, my radiologist turnd from her screen after seeing my PSA results and said "that didn't work, what do you want to do next! As you can see from my chart, it was in the PLNs, we just didn't have the imaging at that time to see it, today we do! I assure you, that was the last time I let my medical team talk me out of a treatment decision!

So, yes, your PSA does seem to indicate BCR, a treatment decision may be needed, question is, when to pull the trigger and with what. The good news, you have choices, many, the "not so good news, you have choices, many...!

Here's a interesting and possibly relevant study - https://www.urotoday.com/conference-highlights/asco-gu-2023/asco-gu-2023-prostate-cancer/142438-asco-gu-2023-tps402-phase-iii-study-of-local-or-systemic-therapy-intensification-directed-by-pet-in-prostate-cancer-patients-with-post-prostatectomy-biochemical-recurrence-indicate-ec?utm_source=newsletter_12613&utm_medium=email&utm_campaign=design-access-and-consensus-criteria-in-gu-clinical-trials

Kevin

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Thank you for your thorough and detailed response, Kevin. Very much appreciated. You have been through a lot. Stay strong. Love the BS Flag statement 😊. I viewed the image, EXCELLENT. I also had Dr. Montgomery. I’m curious as to who came up with the chart. I have an IT background so great interest.

I note the BCR at .3 vs. .2 so wondering about that. I keep reading that 2+ consecutive PSA’s over .2 most Drs. consider BCR vs .3 It appears your radiation was started at .7

I have read a very common place of BCR is in the bladder neck as well as the back of the bladder itself. I wonder if a whole Pelvic Radiation includes those areas, albeit I do believe it would include pelvic lymph nodes. Easy enough to find the answer too.

My post Radical Prostatectomy Urologist is different than my original. The later, pioneered Perineal Prostatectomy (of which I never heard about prior to my prostatectomy; I had the DaVinci) In general, he seems to be a very non-conventional thinker.

He states that Radiation Toxicity almost always presents itself 15-20 years later. To me, Radiation Toxicity is subjective. In other words, not exactly sure what it means to those affected so not quite sure how to interpret. He seems to lean towards waiting to see the cancer via imaging. I have mixed feelings on this because my belief is if f you wait too long, you miss the opportunity of cure via radiation and/or hormone therapy as well as the risk of metastasis.

I sure wish the PSMA scan was more accurate with a lower PSA score because it would seem you could zero in on the area of BCR, if detected. Albeit the downfall is it may not detect “everything” and a whole Pelvis Radiation would have a better chance of coverage.

Re: Hormone Therapy, I wonder if it suppresses or actually eradicates. If it suppresses only, then I see the benefit of using it along with radiation. However, if the goal is to “see” the disease via advanced imaging, like a PSMA, I would lean towards not using in prior too, hence the band aid comment.

It really is a lot to think about. If I could find a study that compares the (2) as it relates to my Gleason and post pathology report, it may benefit in decision making. I’m definitely seeking a 2nd and possibly 3rd opinion and look forward to further comments from anyone. Thanks again.

REPLY
@cedard

Thank you for your thorough and detailed response, Kevin. Very much appreciated. You have been through a lot. Stay strong. Love the BS Flag statement 😊. I viewed the image, EXCELLENT. I also had Dr. Montgomery. I’m curious as to who came up with the chart. I have an IT background so great interest.

I note the BCR at .3 vs. .2 so wondering about that. I keep reading that 2+ consecutive PSA’s over .2 most Drs. consider BCR vs .3 It appears your radiation was started at .7

I have read a very common place of BCR is in the bladder neck as well as the back of the bladder itself. I wonder if a whole Pelvic Radiation includes those areas, albeit I do believe it would include pelvic lymph nodes. Easy enough to find the answer too.

My post Radical Prostatectomy Urologist is different than my original. The later, pioneered Perineal Prostatectomy (of which I never heard about prior to my prostatectomy; I had the DaVinci) In general, he seems to be a very non-conventional thinker.

He states that Radiation Toxicity almost always presents itself 15-20 years later. To me, Radiation Toxicity is subjective. In other words, not exactly sure what it means to those affected so not quite sure how to interpret. He seems to lean towards waiting to see the cancer via imaging. I have mixed feelings on this because my belief is if f you wait too long, you miss the opportunity of cure via radiation and/or hormone therapy as well as the risk of metastasis.

I sure wish the PSMA scan was more accurate with a lower PSA score because it would seem you could zero in on the area of BCR, if detected. Albeit the downfall is it may not detect “everything” and a whole Pelvis Radiation would have a better chance of coverage.

Re: Hormone Therapy, I wonder if it suppresses or actually eradicates. If it suppresses only, then I see the benefit of using it along with radiation. However, if the goal is to “see” the disease via advanced imaging, like a PSMA, I would lean towards not using in prior too, hence the band aid comment.

It really is a lot to think about. If I could find a study that compares the (2) as it relates to my Gleason and post pathology report, it may benefit in decision making. I’m definitely seeking a 2nd and possibly 3rd opinion and look forward to further comments from anyone. Thanks again.

Jump to this post

It's a chart I created to provide a quick visual image of my clinical history, useful when new members of my medical team and I meet for the first time, or providing my clinical history on this or other forums, a picture is worth a thousand words...

After my surgery, PSA was undetectable using standard tests to a single decimal point every three months,. Then in September 2015, Dr. Emmott hesitated before turning away from his screen and said your PSA is .2, it doesn't mean your PCa is back. He was not wrong, but I knew. In December, roughly 90 days later, he turned quicker and said your PSA has risen to .3, you need SRT...I started that in March 16, 39 IMRT, 70.2 Gya. It was in July 16, 90 days after finishing my SRT that my radiologist hesitated after looking at her screen and said your PSA is now .7, the SRT did not work.

If one has decided to image, then decide on treatment, ADT is definitely off the table.

My take is it's not that the PSMA imaging cannot detect at levels below .5, it is the issue of statistically less chance of locating it then depending on one's insurance, may run into difficulties getting the next one above .5 "approved." Same for imaging while on treatment, my oncologist was hesitant to order one with PSA undetectable fo concerns about approval. That happened with one of my four C11 Choline scans at Mayo, TRICARE denied, Mayo said I was on the hook for it, I appealed and won, cited the NCCN guidelines. Thus the questions, will waiting change the treatment plan and does it entail progression that has risk to management of the PCa?

It's an interesting discussion about "killing" PCa cells vice suppressing, we generally agree that radiation and chemotherapy kill, ADT suppresses though given the drop in PSA with ADT, don't some of the PCA cells die...? We know that the longer one is on ADT, the cells which can survive in a low T environment are generally the minority population in the heterogenous mix but as the T dependent cells "die" off, the T "independent" cells move to the forefront and can become the dominate ones, then it's trouble.

I've seen studies which talk to different grade of toxicities associated with radiation treatment, usually in the context of 5-10 years. Statistically, the chances are in your favor...there is a statistical chance that when I leave my house to go to the grocery store, I will be involved in an accident, albeit a manageable risk. My dad hated flying, I said ok, but you have a greater chance getting in an accident on the way to or from the airport, so...

Kevin

REPLY

good input

10 years (BCR age 51) after surgery (surgery age 41) I went from PSA 9 to PSA 19 in two months and during those two months we did imaging in sequence because of insurance requirements from Bone to CT to MRI to PSMA PET and nothing found the cancer, except for the PSMA PET. It found 20+ lymph nodes primarily in the right and left iliac region and also middle part of body and a spot on my left shoulder. Because the location was a bit all over the place, radiation was ruled out as an option. Now on couplet ADT (leuprolide and abiraterone) and PSA less than 0.1 for the past 12 months.

REPLY

Apologies in advance; I am unable to upload an article on
"PSA Cutpoint" by D'Amico, MD, Mar 24, 2023, Dana Farber.
Article suggests salvage tx at .25 PSA.
Other research .2 to .4/.5 PSA to begin salvage tx.
Again sorry I can't add link.

REPLY
@michaelcharles

Apologies in advance; I am unable to upload an article on
"PSA Cutpoint" by D'Amico, MD, Mar 24, 2023, Dana Farber.
Article suggests salvage tx at .25 PSA.
Other research .2 to .4/.5 PSA to begin salvage tx.
Again sorry I can't add link.

Jump to this post

REPLY
@kujhawk1978

It's a chart I created to provide a quick visual image of my clinical history, useful when new members of my medical team and I meet for the first time, or providing my clinical history on this or other forums, a picture is worth a thousand words...

After my surgery, PSA was undetectable using standard tests to a single decimal point every three months,. Then in September 2015, Dr. Emmott hesitated before turning away from his screen and said your PSA is .2, it doesn't mean your PCa is back. He was not wrong, but I knew. In December, roughly 90 days later, he turned quicker and said your PSA has risen to .3, you need SRT...I started that in March 16, 39 IMRT, 70.2 Gya. It was in July 16, 90 days after finishing my SRT that my radiologist hesitated after looking at her screen and said your PSA is now .7, the SRT did not work.

If one has decided to image, then decide on treatment, ADT is definitely off the table.

My take is it's not that the PSMA imaging cannot detect at levels below .5, it is the issue of statistically less chance of locating it then depending on one's insurance, may run into difficulties getting the next one above .5 "approved." Same for imaging while on treatment, my oncologist was hesitant to order one with PSA undetectable fo concerns about approval. That happened with one of my four C11 Choline scans at Mayo, TRICARE denied, Mayo said I was on the hook for it, I appealed and won, cited the NCCN guidelines. Thus the questions, will waiting change the treatment plan and does it entail progression that has risk to management of the PCa?

It's an interesting discussion about "killing" PCa cells vice suppressing, we generally agree that radiation and chemotherapy kill, ADT suppresses though given the drop in PSA with ADT, don't some of the PCA cells die...? We know that the longer one is on ADT, the cells which can survive in a low T environment are generally the minority population in the heterogenous mix but as the T dependent cells "die" off, the T "independent" cells move to the forefront and can become the dominate ones, then it's trouble.

I've seen studies which talk to different grade of toxicities associated with radiation treatment, usually in the context of 5-10 years. Statistically, the chances are in your favor...there is a statistical chance that when I leave my house to go to the grocery store, I will be involved in an accident, albeit a manageable risk. My dad hated flying, I said ok, but you have a greater chance getting in an accident on the way to or from the airport, so...

Kevin

Jump to this post

Thank you, Kevin, for the valued information. Excellent.

Re: NCCN Guidelines for Prostate Cancer, will definitley be keeping an eye on updates to BCR. I see they meet anually. I wonder when and how often the updates are published, and whether automated notificaitons are an option.

Re: 5-10 year toxicity studies, I wonder if there is any authoritative information that could be of reference for both less and greater timeframes..

Re: the C11 Choline Scans, just out of curiosity what was the out of pocket cost your were on the hook for... Happy to hear you were able to win the argument! At the time(s) was a PSMA scan available. I have read about the C11 Choline but do not know or understand the pros/cons between Choline and a PSMA.

Do you (other anyone else) happen to know out of pocket costs regarding Choline and PSMA.. I know that is a difficult question to answer depending on a lot of variables. Just looking for a ballpark.

Another question I have is how long in a lifetime can a person be on ADT therapy both with and without a break, and other than exercise (which I believe is important), and other than caffeine (which is a bladder irritant), what is the best way to promote energy.. Is there some sort of medicine that can help with energy (other than testosterone!) Even though I'm 55, I work full-time but worry about having energy to continue to do so because I'm so tired already (if I have to do hormone therapy)

Interested in learning more about the second graph. Thanks for embedding.

Thanks for the excellent airport analogy. In fact, thanks for everything. - Dave

REPLY
@edmond1971

good input

10 years (BCR age 51) after surgery (surgery age 41) I went from PSA 9 to PSA 19 in two months and during those two months we did imaging in sequence because of insurance requirements from Bone to CT to MRI to PSMA PET and nothing found the cancer, except for the PSMA PET. It found 20+ lymph nodes primarily in the right and left iliac region and also middle part of body and a spot on my left shoulder. Because the location was a bit all over the place, radiation was ruled out as an option. Now on couplet ADT (leuprolide and abiraterone) and PSA less than 0.1 for the past 12 months.

Jump to this post

Thanks for the reply. The person that was next to me after my Proctectomy at UofM was only 40 years old at the time. That was 5 years ago.

That is great news that for the past 12 months PSA is less than 0.1 Have they combined hormone therapy with anything else, and how are your energy levels doing... It is crazy that they found a spot on your left shoulder. Have never heard of such a thing. Thank you veyr much for your input. - Dave

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