44yr PSA180 Gleason9 non-metastatic. Surgery or Treatment?

Posted by dinu @dinu, Aug 29 11:17am

I am 44 yr old, Navy Veteran, just got diagnosed with prostate cancer. First rectal exam showed enlarged prostate, followed by PSA180. Biopsy showed 9 out of the 12 samples with cancer cells (most of them Gleason8 or 9). MRT shows no spread. CT with contrast shows no spread. I just got today my bone scintigraphy. Initial results show no spread. Father had prostate cancer last year, therapy, seems to be cured. Mother has breast cancer and stomach cancer (surgery and treatment) now cured.
My big question now: should i go for complete prostate removal or should i go with the various other treatments?
I am currently being seen for this at the University Clinic of Heidelberg in Germany.
Appreciate all the support and stay positive.

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

Profile picture for surftohealth88 @surftohealth88

@dinu
Those are great results and what is even more fantastic is that YOU are feeling great, energetic and in control of this disease - yeayyyyyy !!! : ))) I also want to commend you for your lifestyle changes - they will help you immensely on a long run. My husband had RP and on our last meeting with surgeon we were told that the best thing one personally can do for PC suppression (beside standard treatments , of course) is to stay away from red meat, eggs and milk products, which we do and have no problems doing it- more so, we discovered so many new fantastic plant based products inclooding vegan mayonnaise which is divine ; ).
Thanks for the update - it is always nice to see somebody having successful treatment and may your RP be as uneventful as was you preparation for it and may your PC soon be eradicated 100 % !

Jump to this post

@surftohealth88 thank you for the tip on veggie mayo. I will look into that.
Best of luck to you and your husband with the treatment.

REPLY
Profile picture for dinu @dinu

Hi to all in this beautiful gang,

UPDATE:
So as you all remember i started this challenge with a PSA of 180.
After 40 days on Bicalutamide 50mg, and the day before my Lupron 11.25g 3month-depot shot, i redid my PSA. I was down to 33.
Now I am off the Bicalutamide, and 30 days after the Lupron belly shot, took my PSA readings again:
- free PSA: 0.16ng/ml
- PSA: 4.41 ng/ml
- qPSA: 0.04%
- Testosterone: < 0.17nmol/l (< 4.9ng/Dl)

I am not sure if this is a good result or not (have not discussed the results with my doc yet) but I am pretty happy with the drop in PSA.
Besides the medication, which honestly saying, it has not exhibited any side effects so far, I am super stoked about my change in diet, which has also lead to an increase in energy, contrary to what one might believe based on my testosterone level.
Diet wise, I have dropped all that is sugar (with the exception of the natural sugar from the fruits I eat). I have eliminated all red meats (and I mean all). No more dairy (i found plenty of plant based substitutes). There are plenty of options in Soy, Almonds, Oat milks, as well as a peas based milk substitute. All of them of course without sugar. No alcohol, but that somewhat already happening before I got diagnosed.
I still eat meat (poultry and fish). Increased the intake of fruits and veggies (all in raw form) and I have to say that I become quite fond of raw broccoli :). Tofu has also become a main ingredient in my salads and some meat substitutes.
On top of that and I am tracking at least 12K steps per day, throughout my various daily activities.
I have also started a home work out program (20-30 minutes/day) with no equipment, just a mat, but when i was on vacation I substituted the mat with a beach towel.

That being said I will redo my PSA beginning of December and January, for my 2 and 3 month mark on Lupron. If the values continue to drop, which i am quite confident they will, I will redo my mpMRI and PSMA PET CT scan.
Based on the results of these two scans, I will then most likely schedule my RARP.

Overall, I am feeling really good both physically and mentally.

Feel free to share your opinions and thought on my progress.

The main thing is to stay focused and remain positive.

I know you all can do it.

Thank you for taking the time to read my update and I look forward to hearing from you all.

All the best,
Dinu

Jump to this post

@dinu - good stuff!!! Keep up your efforts… YOU are worth it! I didn’t see if you’re looking into having a decipher analysis done on your tumor? But I recommend it. I discovered I was “blessed” with a high decipher score (.97), which indicates an aggressive cancer. I’ve had prostatectomy (in 12/21), and after some residual cancer was discovered on the bladder neck, did hormone therapy and 40+ zaps to the prostate bed and a squirrelly lymph node… was undetectable for almost a year and then it came back with a vengeance this past summer. Over 30 Mets throughout various bones… just finished a 6 session round of chemo and I’m continuing hormone therapy — we are attempting to manage it, and for the time being it’s having great effect.
Again - keep up your battle - love the advice on eating healthy!

REPLY

Update 1 month on Lupron:
After 40 days on Bicalutamid 50mg, I was scheduled to get my first shot of Lupron (Trenantone 11,25mg 3-month depot). The day before the shot (01 Oct 2025), I got my PSA checked.
For those of you new to the trend, my initial PSA (mid August) was 180. Now it came back 33.

1 month into the Lupron, PSA 4.14.
I did change my diet drastically (no red meat, no dairy, no sugars, no coffee). Introduced a lot of veggies (mostly consumed raw). I am drinking soy, almond, or oat milk. I have experienced a lot with various forms of tofu. I also found a bunch of vegan dairy alternatives. One of them was an imitation feta cheese, that i had to read the ingredient several times because I could not believe it was made of vegetables (contained cocos milk). I could not make the difference between it and the real feta.
Now two weeks after the shot, I am not seeing any side effects.
I am working out daily, using one of those free at-home work-out apps. It gives me each day a routine of 20 minutes, and even if I am in a pretty good shape, I still break out a sweat. I also walk on average 12000 steps per day.
My PSA will be checked monthly and if it drops significantly after the first 3 months, I will go get RARP.
Psychologically, I am doing great, and i am actually looking forward to surgery.
The idea is to just go about with my normal life (work and family) and not really bother too much with the PCa.

Update 2 months on Lupron:
My PSA has gone up a bit from 4.14 last month to 5.35.
I am still doing all the dieting and the fitness from the previous month.
What i did additionally was to redo some of the blood works. What came back a bit outside of the norm were:
Hemoglobin 13.4 (13.8–17.2 g/dL)
Hematocrit 37 (42% to 54%)
All other values are withing the normal values. Any suggestions on how to combat the low levels?

Additionally I have had genetic testing done. While i was expecting mutations in the BRCA1/2, or TP53 genes, it came out that I have a mutation in the ATM gene. My mother had breast and stomach cancer (now all clear), but according to the discussion with the folks from the genetic dept. the ATM gene mutation only increases my risk of cancer slightly (?!). Luckly i only have 1 of 2 pairs affected. Even though my father had PCa.

ATM could also come from my military exposure in various combat zones plus the ship deployments, combined with the fact that I worked as an industrial radiographer for 11 years.

I read that the most effective treatment is ATR with PARP. What exactly is ATR?

I will discuss all these topics with my doctor next week, but i would appreciate your thoughts

REPLY
Profile picture for dinu @dinu

Update 1 month on Lupron:
After 40 days on Bicalutamid 50mg, I was scheduled to get my first shot of Lupron (Trenantone 11,25mg 3-month depot). The day before the shot (01 Oct 2025), I got my PSA checked.
For those of you new to the trend, my initial PSA (mid August) was 180. Now it came back 33.

1 month into the Lupron, PSA 4.14.
I did change my diet drastically (no red meat, no dairy, no sugars, no coffee). Introduced a lot of veggies (mostly consumed raw). I am drinking soy, almond, or oat milk. I have experienced a lot with various forms of tofu. I also found a bunch of vegan dairy alternatives. One of them was an imitation feta cheese, that i had to read the ingredient several times because I could not believe it was made of vegetables (contained cocos milk). I could not make the difference between it and the real feta.
Now two weeks after the shot, I am not seeing any side effects.
I am working out daily, using one of those free at-home work-out apps. It gives me each day a routine of 20 minutes, and even if I am in a pretty good shape, I still break out a sweat. I also walk on average 12000 steps per day.
My PSA will be checked monthly and if it drops significantly after the first 3 months, I will go get RARP.
Psychologically, I am doing great, and i am actually looking forward to surgery.
The idea is to just go about with my normal life (work and family) and not really bother too much with the PCa.

Update 2 months on Lupron:
My PSA has gone up a bit from 4.14 last month to 5.35.
I am still doing all the dieting and the fitness from the previous month.
What i did additionally was to redo some of the blood works. What came back a bit outside of the norm were:
Hemoglobin 13.4 (13.8–17.2 g/dL)
Hematocrit 37 (42% to 54%)
All other values are withing the normal values. Any suggestions on how to combat the low levels?

Additionally I have had genetic testing done. While i was expecting mutations in the BRCA1/2, or TP53 genes, it came out that I have a mutation in the ATM gene. My mother had breast and stomach cancer (now all clear), but according to the discussion with the folks from the genetic dept. the ATM gene mutation only increases my risk of cancer slightly (?!). Luckly i only have 1 of 2 pairs affected. Even though my father had PCa.

ATM could also come from my military exposure in various combat zones plus the ship deployments, combined with the fact that I worked as an industrial radiographer for 11 years.

I read that the most effective treatment is ATR with PARP. What exactly is ATR?

I will discuss all these topics with my doctor next week, but i would appreciate your thoughts

Jump to this post

@dinu
Good to hear you’re feeling well. Not really pleased about your PSA rising, But you haven’t had the primary treated yet.

Have you had your testosterone checked? That is really critical for keeping your PSA down. You should make sure to get a testosterone test the next month.

Has your RBC count also going down. I’ve got the same hemocrit and HGB thing you’ve got, had it for years. The only thing you could do to stop this is stop ADT, Don’t worry about it it’s minor, Right now. Be aware that a PARP inhibitor can greatly reduce hemocrit, HGB, WBC and platelets. My oncologist has had me hold off on getting a PARP For at least five years because it is so hard on the system.

Must admit I’ve never heard of the ATR with PARP Treatment, And I know PARP has not worked well with ATM, but maybe that is the answer. Here is an article about it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11934101/.
There’s no reason you can’t have coffee. I’ve had one cup a day for years.

Your father having prostate cancer, doubled your chance of getting it and have an ATM issue on top of it, that means that you get it younger like I did With the father and BRCA2 combo. Your comments about one out of two pairs matches mine. I got BRCA2 from my mother and my father didn’t have it, but had prostate cancer.

Hereditary genetic issues do not occur from Environmental issues, They only occur because of inheriting them from a family member. The fact that you got PC so young could also be due to the environmental issues.

Almond milk isn’t really good compared to soy or oat milk. Soy milk has the most protein, which is one thing you need when you have prostate cancer and are taking ADT. You need the protein to keep your muscles strong. Hopefully you’re getting a significant amount of protein every day with the diet you’ve picked. I eat chicken or fish almost every day and even put chicken or seafood in my salad to boost the protein. I also eat high protein cereal in the morning. That helps with keeping your muscles up because of the deteriorating effect that ADT has.

Actually, your PSA rising is a good reason to get the RARP. You’re letting the cancer fester in your prostate and that could be causing the PSA rise, Hopefully, it’s not because it is metastasized to other spots in your body.

Have you had a PSMA pet test? The CT scan is sort of worthless at this point, you need a pet scan to find out if the cancer is spread anywhere else in your body. The rising PSA is not a good sign and could mean that it is spreading. Your high PSA will allow the pet test to show everything going on in your body.

Hoping for the best in the future for you.

REPLY
Profile picture for jeff Marchi @jeffmarc

@dinu
Good to hear you’re feeling well. Not really pleased about your PSA rising, But you haven’t had the primary treated yet.

Have you had your testosterone checked? That is really critical for keeping your PSA down. You should make sure to get a testosterone test the next month.

Has your RBC count also going down. I’ve got the same hemocrit and HGB thing you’ve got, had it for years. The only thing you could do to stop this is stop ADT, Don’t worry about it it’s minor, Right now. Be aware that a PARP inhibitor can greatly reduce hemocrit, HGB, WBC and platelets. My oncologist has had me hold off on getting a PARP For at least five years because it is so hard on the system.

Must admit I’ve never heard of the ATR with PARP Treatment, And I know PARP has not worked well with ATM, but maybe that is the answer. Here is an article about it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11934101/.
There’s no reason you can’t have coffee. I’ve had one cup a day for years.

Your father having prostate cancer, doubled your chance of getting it and have an ATM issue on top of it, that means that you get it younger like I did With the father and BRCA2 combo. Your comments about one out of two pairs matches mine. I got BRCA2 from my mother and my father didn’t have it, but had prostate cancer.

Hereditary genetic issues do not occur from Environmental issues, They only occur because of inheriting them from a family member. The fact that you got PC so young could also be due to the environmental issues.

Almond milk isn’t really good compared to soy or oat milk. Soy milk has the most protein, which is one thing you need when you have prostate cancer and are taking ADT. You need the protein to keep your muscles strong. Hopefully you’re getting a significant amount of protein every day with the diet you’ve picked. I eat chicken or fish almost every day and even put chicken or seafood in my salad to boost the protein. I also eat high protein cereal in the morning. That helps with keeping your muscles up because of the deteriorating effect that ADT has.

Actually, your PSA rising is a good reason to get the RARP. You’re letting the cancer fester in your prostate and that could be causing the PSA rise, Hopefully, it’s not because it is metastasized to other spots in your body.

Have you had a PSMA pet test? The CT scan is sort of worthless at this point, you need a pet scan to find out if the cancer is spread anywhere else in your body. The rising PSA is not a good sign and could mean that it is spreading. Your high PSA will allow the pet test to show everything going on in your body.

Hoping for the best in the future for you.

Jump to this post

@jeffmarc
Here is the one article i found where they are talking about ATR with PARP.
https://www.sciencedirect.com/science/article/pii/S0302283820308368
Coffee wise i did start to have one a day.
Thanks for the tip on the almond milk. Chicken, fish and turkey are in daily diet.
I did get a Testosteron test last month. It was less than 0.17. This month came back at 8, but i am not sure if it is on the same scale. I have to check with the doc later this week, since it was done at a different lab.
The PSMA scan will be done in January. Most likely i will get another 3 month depot of Lupron by the end of the month. Maybe the doc will increase the dosage. The initial one was 11.25mg, even though i read that most people get the 22.5mg shot.
The BRCA 1 was clean, and my BRCA 2 has a very small variation that, according to the Genetics doc, was within the normal range and classified as irrelevant. They said to check again in 2-3 years to see if it gets reclassified.

REPLY
Profile picture for dinu @dinu

@jeffmarc
Here is the one article i found where they are talking about ATR with PARP.
https://www.sciencedirect.com/science/article/pii/S0302283820308368
Coffee wise i did start to have one a day.
Thanks for the tip on the almond milk. Chicken, fish and turkey are in daily diet.
I did get a Testosteron test last month. It was less than 0.17. This month came back at 8, but i am not sure if it is on the same scale. I have to check with the doc later this week, since it was done at a different lab.
The PSMA scan will be done in January. Most likely i will get another 3 month depot of Lupron by the end of the month. Maybe the doc will increase the dosage. The initial one was 11.25mg, even though i read that most people get the 22.5mg shot.
The BRCA 1 was clean, and my BRCA 2 has a very small variation that, according to the Genetics doc, was within the normal range and classified as irrelevant. They said to check again in 2-3 years to see if it gets reclassified.

Jump to this post

@dinu
Your hereditary genetic test came up with just ATM. That will never change.

If you get a somatic test, then they can find other things like BRCA. That can change over time as you get new metastasis.

Great to hear you’re getting the PSMA pet. That will really let you know what’s going on

Testosterone tests are whole numbers. 8 is nice and low.

REPLY
Profile picture for dinu @dinu

@jeffmarc
Here is the one article i found where they are talking about ATR with PARP.
https://www.sciencedirect.com/science/article/pii/S0302283820308368
Coffee wise i did start to have one a day.
Thanks for the tip on the almond milk. Chicken, fish and turkey are in daily diet.
I did get a Testosteron test last month. It was less than 0.17. This month came back at 8, but i am not sure if it is on the same scale. I have to check with the doc later this week, since it was done at a different lab.
The PSMA scan will be done in January. Most likely i will get another 3 month depot of Lupron by the end of the month. Maybe the doc will increase the dosage. The initial one was 11.25mg, even though i read that most people get the 22.5mg shot.
The BRCA 1 was clean, and my BRCA 2 has a very small variation that, according to the Genetics doc, was within the normal range and classified as irrelevant. They said to check again in 2-3 years to see if it gets reclassified.

Jump to this post

@dinu
The article you quoted does not have any ATM mentioned for treatment.

The article I quoted was specifically for using the drugs with ATM. It might be more useful for you to read.

REPLY

Update 1 month on Lupron:
After 40 days on Bicalutamid 50mg, I was scheduled to get my first shot of Lupron (Trenantone 11,25mg 3-month depot). The day before the shot (01 Oct 2025), I got my PSA checked.
For those of you new to the trend, my initial PSA (mid August) was 180. Now it came back 33.

1 month into the Lupron, PSA 4.14.
I did change my diet drastically (no red meat, no dairy, no sugars, no coffee). Introduced a lot of veggies (mostly consumed raw). I am drinking soy, almond, or oat milk. I have experienced a lot with various forms of tofu. I also found a bunch of vegan dairy alternatives. One of them was an imitation feta cheese, that i had to read the ingredient several times because I could not believe it was made of vegetables (contained cocos milk). I could not make the difference between it and the real feta.
Now two weeks after the shot, I am not seeing any side effects.
I am working out daily, using one of those free at-home work-out apps. It gives me each day a routine of 20 minutes, and even if I am in a pretty good shape, I still break out a sweat. I also walk on average 12000 steps per day.
My PSA will be checked monthly and if it drops significantly after the first 3 months, I will go get RARP.
Psychologically, I am doing great, and i am actually looking forward to surgery.
The idea is to just go about with my normal life (work and family) and not really bother too much with the PCa.

Update 2 months on Lupron:
My PSA has gone up a bit from 4.14 last month to 5.35.
I am still doing all the dieting and the fitness from the previous month.
What i did additionally was to redo some of the blood works. What came back a bit outside of the norm were:
Hemoglobin 13.4 (13.8–17.2 g/dL)
Hematocrit 37 (42% to 54%)
All other values are withing the normal values. Any suggestions on how to combat the low levels?

Update 2 1/2 months on Lupron switching gear to Degarelix:
So after my 2 month PSA/testosterone levels sligthly spikes (5.3 PSA, 8 Test), i re-run the tests 2 weeks later. Results 11 PSA/4.1 Test.
The doct also performed an ultrasound and a DRE and noticed that the prostate has reduced its size as compared to the initial evaluation and it feels much "softer".
Then he switched me to Degarelix.
Initial application was today 2 shots of 120mg each (1 month depot) for a total dosis of 240mg. Follow up shot next month with a single 80mg shot.

Other than the disappointment with the results, i am in good moods and staying positive. Waiting to see how efficient the Degarelix is, and hopefully my values drop and i can get scheduled for the RARP.

To all Happy Holidays and a Happy New Year!

REPLY
Profile picture for dinu @dinu

Update 1 month on Lupron:
After 40 days on Bicalutamid 50mg, I was scheduled to get my first shot of Lupron (Trenantone 11,25mg 3-month depot). The day before the shot (01 Oct 2025), I got my PSA checked.
For those of you new to the trend, my initial PSA (mid August) was 180. Now it came back 33.

1 month into the Lupron, PSA 4.14.
I did change my diet drastically (no red meat, no dairy, no sugars, no coffee). Introduced a lot of veggies (mostly consumed raw). I am drinking soy, almond, or oat milk. I have experienced a lot with various forms of tofu. I also found a bunch of vegan dairy alternatives. One of them was an imitation feta cheese, that i had to read the ingredient several times because I could not believe it was made of vegetables (contained cocos milk). I could not make the difference between it and the real feta.
Now two weeks after the shot, I am not seeing any side effects.
I am working out daily, using one of those free at-home work-out apps. It gives me each day a routine of 20 minutes, and even if I am in a pretty good shape, I still break out a sweat. I also walk on average 12000 steps per day.
My PSA will be checked monthly and if it drops significantly after the first 3 months, I will go get RARP.
Psychologically, I am doing great, and i am actually looking forward to surgery.
The idea is to just go about with my normal life (work and family) and not really bother too much with the PCa.

Update 2 months on Lupron:
My PSA has gone up a bit from 4.14 last month to 5.35.
I am still doing all the dieting and the fitness from the previous month.
What i did additionally was to redo some of the blood works. What came back a bit outside of the norm were:
Hemoglobin 13.4 (13.8–17.2 g/dL)
Hematocrit 37 (42% to 54%)
All other values are withing the normal values. Any suggestions on how to combat the low levels?

Update 2 1/2 months on Lupron switching gear to Degarelix:
So after my 2 month PSA/testosterone levels sligthly spikes (5.3 PSA, 8 Test), i re-run the tests 2 weeks later. Results 11 PSA/4.1 Test.
The doct also performed an ultrasound and a DRE and noticed that the prostate has reduced its size as compared to the initial evaluation and it feels much "softer".
Then he switched me to Degarelix.
Initial application was today 2 shots of 120mg each (1 month depot) for a total dosis of 240mg. Follow up shot next month with a single 80mg shot.

Other than the disappointment with the results, i am in good moods and staying positive. Waiting to see how efficient the Degarelix is, and hopefully my values drop and i can get scheduled for the RARP.

To all Happy Holidays and a Happy New Year!

Jump to this post

@dinu
My hemocrit is 36.7 below the 39 for normal. You are real close. Not a big problem
My hemoglobin is 12.3 normal is 13.0 according to my lab. You are still normal, which is good.

That’s after eight years on ADT.

Disappointed your PSA is not going down any further, and actually rising a lot. Castrate resistance occurs when your PSA starts rising even though you are on ADT. I think it’s a little too early to consider you are in that condition, It usually takes years before that happens. It’s more likely your cancer is growing, even with the ADT. What does the doctor think? Have you asked them?’ I don’t understand what they expect to happen with a Firmagon shot. Your testosterone is already way down. Your PSA is going up, More than double. There’s not much more Firmagon can do with your testosterone so low already. It sounds like the doctor is shooting in the dark. Is there any way for you to get a second opinion?

When I had my surgery, they didn’t give me ADT first, They knew there was a problem and removed it. Why are they waiting? Your PSA more than doubling in 2 weeks should be a real warning.

That Firmagon shot can become painful over time. Orgovyx works just as well and is a pill You take daily. Maybe you can ask the doctor if it would make sense to switch you.

By now your testosterone is below 5. As the following information for AI shows, Once your Testosterone reaches castration level the affects are the same, So Orgovyx would be a lot easier on your body And you are at castration level. Results after one month of being on Firmagon will be quite revealing.

Both Firmagon (degarelix) and Orgovyx (relugolix) are effective GnRH antagonists that rapidly lower testosterone and PSA, but studies suggest Firmagon might offer slightly faster initial PSA reduction and potentially lower early PSA recurrence risk, though Orgovyx (relugolix) provides a convenient oral option, with long-term outcomes often similar for both once castration levels are achieved.

REPLY
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