Side effects and PSA after photon radiation.

Posted by edtrucks @edtrucks, 2 days ago

I would like to hear from people that have had photon radiation similar to me, total 7000 Cgy dosed at 28 sessions of 250 Cgy. My radiation was applied on a Truebeam. What side effects directly after radiation did you have, and did any side effects emerge months/years after the radiation? My side effects are mainly pains in the areas below the stomach to the groin, around my entire body, that were radiated while focusing on the prostate.

What was your PSA after radiation, and how long did it take to go down? My PSA was at 8.4 before radiation and went down to 5.3 three months after completing radiation. My urologist was not happy with the results but from what I read, it can take up to two years to reach the nadir. I would be reluctant to go onto ADT so soon after radiation. Thanks for your input.

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Your PSA is still awfully high. I’m not surprised if your doctor wants to put you on ADT, That would prevent any metastasis you have from spreading and growing. Some people After radiation have metastasis that were not found originally. Did you have a PSMA Pet test before having radiation? Even if you did, the scan can only see metastasis that are larger than 2.5 mm and a UCSF radiologist says even 5 mm is hard to find.

Was the radiation concentrated mainly on the prostate or did they also cover the lymph nodes and prostate bed?

What were your biopsy results? Did you have any of the following? extra capillary extensions, intraductal, Cribriform, EPE and seminal vesicle invasion. Those can be very aggressive and radiation doesn’t always completely remove them.

It makes sense to speak to your doctor and find out his thoughts as to why your PSA is dropping so slowly. Ask him about the things I’ve mentioned and have they come up with some other reason that might be the cause.

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I was PSA 10.5 before SBRT 5-dose radiation April 9-21, 2025.
My PSA dropped to 0.36 by July 9, but that's because I was on ADT/Orgovyx starting March 26, couple weeks before radiation. Did your care team not suggest ADT?

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My biopsies, which I had two, around 30 samples total, had 3 that were Gleason 3+3 and one that was Gleason 3+4, where the 4 was less than 5% of the sample. I was told that ADT would not be necessary with those Gleason scores.

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Profile picture for edtrucks @edtrucks

My biopsies, which I had two, around 30 samples total, had 3 that were Gleason 3+3 and one that was Gleason 3+4, where the 4 was less than 5% of the sample. I was told that ADT would not be necessary with those Gleason scores.

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You may consider a Decipher test. Page 251 of Dr Patrick Walsh's "Guide to Surviving Prostate Cancer" indicates a Decipher score of 0.45 to 1.00 makes it more likely to have an aggressive disease, hormonal therapy may be helpful to prevent metastasis. I understand the book is not a professional, I suggest you confirm with your oncologist if a Decipher test will be beneficial to you.

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@edtrucks
I had proton not photon and you asked those with photon.

One of the reason I had proton radiation was controlling the radiation beam entering body. With photon the radiation enters body full force and exits full force. Thus not surprising you have side affects.

If you are not aware of proton radiation it enters the body a low dose, releases it full dose a specific distance and then stops. It does not exit the body or have radiation damage to tissues, organs, etc. beyond the very specific stop of beam set up by in my case physic department.

I hope you had other test done prior to having photon radiation. Decipher, PSMA, etc. I did not want hormone treatments and was originally set up for it. My Mayo R/O asked me about doing Decipher and I set yes. It came back low risk and thus my R/O changed my treatment plan from radiation and hormone to radiation only.

For my treatment they entered on both side of my hip area. I was told I would get like a sun burn over time where it enters. They were correct, then after treatments ended turn to a tan look, and then gradual went away. I had not pain, no irritation only increased urination and urgency.

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Given you’re a Gleason 7 with negative PSMA scan, it is a bit of a head scratcher. For reference, I was a 4+3 with a psa of 17.5 and two and a half months after treatment I was a 4.33.

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Profile picture for ozelli @ozelli

Given you’re a Gleason 7 with negative PSMA scan, it is a bit of a head scratcher. For reference, I was a 4+3 with a psa of 17.5 and two and a half months after treatment I was a 4.33.

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| @ozelli | I looked at your post on Apr 24 4:50am, which was as follows:

Just an update for those readers who may have had proton bean therapy. I am by no means out of the woods but it does seem to take at least, in my case 2 years (or hopefully more) to get to one's nadir.

My numbers were:

Radiation Type: Proton Beam

Number of Sessions: 21

Last PSA before treatment: 17.53

[2-1/2 months post Tx: 4.33} updated today Sep 4]

3 months post Tx: 4.11

6 months post Tx: 2.47

9 months post Tx: 1.83

12 months post Tx: 1.22

15 months post Tx: 0,94
skipped the next one

21 months post Tx: 0.60

24 months: ?

Are you able to update for 24 months, even 27 months post Tx? Although I had SBRT in April 2025, wth Orgovyx starting March 26, I am very interested in your PSA readings two years and more after your treatment. Did your oncologist say you have reached your nadir yet. I was 0.36 2-1/2 months post Tx. If my PSA drops to < 0.1 in October, my second blood draw since April, I will seriously consider if I can stop Orgovyx by then. My RO said last April I may be on ADT 8 months to a year, but last July she said maybe I can stop after 6 months. I was wondering why the big change in her assessment of how long I need ADT? But then, well, I am encouraged that you had no ADT at all and you are doing very well. Thanks.

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Profile picture for vircet @vircet

| @ozelli | I looked at your post on Apr 24 4:50am, which was as follows:

Just an update for those readers who may have had proton bean therapy. I am by no means out of the woods but it does seem to take at least, in my case 2 years (or hopefully more) to get to one's nadir.

My numbers were:

Radiation Type: Proton Beam

Number of Sessions: 21

Last PSA before treatment: 17.53

[2-1/2 months post Tx: 4.33} updated today Sep 4]

3 months post Tx: 4.11

6 months post Tx: 2.47

9 months post Tx: 1.83

12 months post Tx: 1.22

15 months post Tx: 0,94
skipped the next one

21 months post Tx: 0.60

24 months: ?

Are you able to update for 24 months, even 27 months post Tx? Although I had SBRT in April 2025, wth Orgovyx starting March 26, I am very interested in your PSA readings two years and more after your treatment. Did your oncologist say you have reached your nadir yet. I was 0.36 2-1/2 months post Tx. If my PSA drops to < 0.1 in October, my second blood draw since April, I will seriously consider if I can stop Orgovyx by then. My RO said last April I may be on ADT 8 months to a year, but last July she said maybe I can stop after 6 months. I was wondering why the big change in her assessment of how long I need ADT? But then, well, I am encouraged that you had no ADT at all and you are doing very well. Thanks.

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I was in Australia for the 24 month mark, so am having another test on the 18th of this month.
That will be at the 26th month mark.
Would love for it to be at least under 0.5. We will see.

My doc said the benefits of ADT didn’t outweigh the risks in my case. Didn’t argue and hightailed it out of his office before he could change his mind. There is no doubt that ADT helps with BCR but by how much and at what cost?

Only time will tell.

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Two years ago, I had 39 sessions of photon (VMAT) radiation for a total of 78 Gy. This was administered by a Truebeam linac. No ADT. This was to treat Gleason 3+4 with a high Decipher score.

My side effects have been limited to sexual function, but that is not a surprise as I had ED for years before being diagnosed with prostate cancer. No incontinence, rectal burns (I did have SpaceOAR), suntan/sunburn marks, etc. There was one day 8 months ago when I passed some blood during consecutive bowel movements, but that was the only time.

My PSA before the cancer diagnosis was 4.63. The first reading a month after radiation was 1.66. My most recent test in March was 0.26. I will be doing my 24 month PSA check next week.

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Thanks dgd1953 for your information. Your experience is the closest to mine so far. I never had a decipher test. No ED or incontinence after Photon radiation. I did not have SpaceOAR. No ADT. Some blood with BM, burns and continued pain in radiated regions 4 months after. While your PSA dropped around 60% in the first month, my dropped around 35% after three months. With your PSA continuing to decline that is a positive and I am hopeful that I will see similar result. My urologist wanted me to have another PSA now, but my next visit is in 3 months. So I'll probably wait until closer to the apt to check my PSA.

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