Photon Radiation Treatment After Effects FYI

Posted by suzdog @suzdog, Mar 21 10:11pm

I updated a post with this response and then noticed the post was from 2024. This made me want to post my experience with the photon radiation treatment I got for anyone thinking about doing it. I had 28 treatments of photon radiation for prostate cancer that was localized and a PSA of 22 when I started. Within weeks I got the side effects they said would go away in weeks or a couple months after treatment ended. Initially it was frequent urination & a stinging sensation when I urinated. 6 months after treatment ended the after effects started getting worse. Very frequent urination/3+ bowel movements a day/a lot of gas when I go to the bathroom every time/bad stomach discomfort on and off all day/feeling light headed all the time/weird itching all over my body. The itching & stomach problems mimicked symptoms of maybe a more serious issue happening not related to my treatment. So I went in for tests over the next 4 months. Blood tests for every organ - liver, kidneys, pancreas, thyroid/Total CBC Blood Test Panel for blood cancer/EKG/Electro-Cardiogram/CT Scan. All tests came up negative for serious issues. Now I am 13+ months from my last treatment. I do stay hydrated so I documented how many times a day I go to the bathroom. Average is 10 times a day with still 3+ bowel movements and gas all the time. I never know what is going to come out. After doing research I have diagnosed myself as having severe "Radiation Cystitis & Radiation Fibrosis". Google those to see what can happen that I wasn't told about. The oncologist I had fried me good. According to google AI It seems I maybe got higher doses than needed of radiation which has contributed to the severity of my after effects and it mentions that radiation does act differently on people. I have read many posts about other's experience with radiation but have yet to come across one that sounds as bad as mine. The oncologist said my treatment plan was "normal" and wasn't different than what others get but I find it hard to believe my after effects are so much worse than normal. My CT Scan also showed my bladder being affected and I quote "a distended bladder with mild wall thickening is a common finding following radiation treatment for prostate cancer". According to my Urologist my bladder fills up but doesn't empty because of damage caused to nerves that make the bladder contract so I go multiple times a day. Am I happy I did radiation instead of surgery ? Yes and No. The good news is my PSA has dropped faster than expected so hopefully the cancer is gone and by 2 years out my PSA should be close to 0. I opted for no hormone treatment, only radiation so I am glad I don't have all those side effects I see from people. I probably should have gotten the surgery if I knew I would feel like this everyday but too late now. I am in my 70's which is why I opted for radiation as I didn't want to be unable to have sex after surgery or have to wear a diaper or pee pad. It's hard enough now at my age for the sex thing lol... Kind of a man thing I guess. Since I have to suffer I am glad I don't have either one of those problems to deal with. Anyway, that's my experience so far. I just hope these symptoms don't get worse or kill me as they really suck as it is. My research says they could get worse so fingers crossed they don't. Good Luck all that have to deal with this. I hope this info helps you ask the right questions & do your own research to see all the possible issues if you are looking into doing this. I didn't and trusted my oncologist who basically just gave me a 3 page print out that mentioned some possible side effects but nothing close to what I have been experiencing for the last 7 months. All the Best to everyone.

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

Profile picture for surftohealth88 @surftohealth88

@heavyphil

Geeezzz, now I wonder why RO doctor told my hubby that he needs gold markers inserted when we had a consult about possible adjuvant @@ ! RO is well known big shot in the area but now I am freaking out and wondering if we should look for another RO *sigh
Honestly ...

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@surftohealth88 This is what I found out as to why they use them still. The other RO I dealt with pooh-poohed them and said today's machine technology takes care of delivering the dose accurately but this is what the expert "google" says. Gold seeds (fiducial markers) are not strictly required for all photon radiation therapy, but they are still commonly used in prostate cancer treatment to significantly improve daily targeting accuracy (IGRT). While technology has advanced, seeds help minimize radiation dose to nearby healthy tissues, such as the rectum, ensuring maximum precision. Why they are used: The prostate can move slightly on a daily basis due to bladder fullness or bowel gas. The non-radioactive seeds allow therapists to track the prostate's exact position before each treatment session.
Alternatives: Modern techniques like MRI-guided radiation (MR-Linac) or soft-tissue imaging techniques (cone-beam CT) can sometimes allow for daily adjustment without permanent fiducial marker implantation. When they are used: They are frequently used with Intensity Modulated Radiation Therapy (IMRT) to safely deliver higher, more effective doses to the prostate. In summary, while advanced technology has created alternatives, gold seeds are considered a "gold standard" for managing prostate movement during External Beam Radiation Therapy (EBRT) to maximize precision.

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Profile picture for suzdog @suzdog

@surftohealth88 This is what I found out as to why they use them still. The other RO I dealt with pooh-poohed them and said today's machine technology takes care of delivering the dose accurately but this is what the expert "google" says. Gold seeds (fiducial markers) are not strictly required for all photon radiation therapy, but they are still commonly used in prostate cancer treatment to significantly improve daily targeting accuracy (IGRT). While technology has advanced, seeds help minimize radiation dose to nearby healthy tissues, such as the rectum, ensuring maximum precision. Why they are used: The prostate can move slightly on a daily basis due to bladder fullness or bowel gas. The non-radioactive seeds allow therapists to track the prostate's exact position before each treatment session.
Alternatives: Modern techniques like MRI-guided radiation (MR-Linac) or soft-tissue imaging techniques (cone-beam CT) can sometimes allow for daily adjustment without permanent fiducial marker implantation. When they are used: They are frequently used with Intensity Modulated Radiation Therapy (IMRT) to safely deliver higher, more effective doses to the prostate. In summary, while advanced technology has created alternatives, gold seeds are considered a "gold standard" for managing prostate movement during External Beam Radiation Therapy (EBRT) to maximize precision.

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@suzdog

Thank you so much for finding time to address my concern, it is very much appreciated. < 3

My husband had RARP last year and he will possibly need early salvage radiation, so we had consultations with RO about IMRT for adjuvant therapy (or early salvage) at the end of 2025. RO mentioned placing gold markers. We did not ask about details since we had no knowledge of how radiation therapy is done in general.

In this thread it was mentioned that gold markers are always placed on the prostate gland to have a clear and precise target, so the question now is - where and why gold markers are placed if there is NO gland 😵‍💫.

Once again, thank you for trying to help : ).

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Profile picture for surftohealth88 @surftohealth88

@suzdog

Thank you so much for finding time to address my concern, it is very much appreciated. < 3

My husband had RARP last year and he will possibly need early salvage radiation, so we had consultations with RO about IMRT for adjuvant therapy (or early salvage) at the end of 2025. RO mentioned placing gold markers. We did not ask about details since we had no knowledge of how radiation therapy is done in general.

In this thread it was mentioned that gold markers are always placed on the prostate gland to have a clear and precise target, so the question now is - where and why gold markers are placed if there is NO gland 😵‍💫.

Once again, thank you for trying to help : ).

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@surftohealth88 My pleasure. I didn't think your remark thru to realize the prostate is gone and you were talking salvage radiation. Anyway, here is another google explanation. A radiation oncologist (RO) would recommend gold markers for salvage radiation therapy even without a prostate gland because the markers serve as essential, fixed reference points to track the precise location of the prostate bed (the area where the prostate used to be). Despite the lack of a gland, the target area can still move slightly day-to-day due to bladder filling or rectal gas, making precise targeting crucial for sparing healthy tissues. Tracking the Surgical Bed: Following a radical prostatectomy, the remaining anatomical structures (the "prostate bed")—including the bladder neck and anastomosis area—can move. Gold markers remain stable in this soft tissue, acting as a reliable, radiopaque surrogate for that area.
Precision in Image-Guided Radiation Therapy (IGRT): Salvage radiation requires high precision to kill potential residual cancer cells while sparing nearby healthy organs (rectum and bladder). Gold markers allow for daily image guidance to ensure the radiation beam is perfectly aligned with the target.
Reduction of Margins: Using markers enables the RO to use smaller safety margins. This means they can deliver a high dose to the target area while reducing the radiation dose to surrounding tissues, thereby minimizing toxicity.
Alternative to Surgical Clips: While surgical clips are sometimes used, gold seeds are generally easier to identify on daily CT scans and provide superior, stable tracking. In summary, the markers do not mark the prostate gland itself, but rather the empty space where the gland was, allowing for accurate, daily targeting of the area at risk for recurrence. As far as my situation Google said the markers make it more accurate so I am left wondering why my bladder got nuked/my stomach is toast & I have to run to the bathroom 10 times a day if the markers made sure other things were not radiated. Makes me wonder just how much they help in any situation. Tell your husband Good Luck for me !!!!

REPLY
Profile picture for suzdog @suzdog

@surftohealth88 My pleasure. I didn't think your remark thru to realize the prostate is gone and you were talking salvage radiation. Anyway, here is another google explanation. A radiation oncologist (RO) would recommend gold markers for salvage radiation therapy even without a prostate gland because the markers serve as essential, fixed reference points to track the precise location of the prostate bed (the area where the prostate used to be). Despite the lack of a gland, the target area can still move slightly day-to-day due to bladder filling or rectal gas, making precise targeting crucial for sparing healthy tissues. Tracking the Surgical Bed: Following a radical prostatectomy, the remaining anatomical structures (the "prostate bed")—including the bladder neck and anastomosis area—can move. Gold markers remain stable in this soft tissue, acting as a reliable, radiopaque surrogate for that area.
Precision in Image-Guided Radiation Therapy (IGRT): Salvage radiation requires high precision to kill potential residual cancer cells while sparing nearby healthy organs (rectum and bladder). Gold markers allow for daily image guidance to ensure the radiation beam is perfectly aligned with the target.
Reduction of Margins: Using markers enables the RO to use smaller safety margins. This means they can deliver a high dose to the target area while reducing the radiation dose to surrounding tissues, thereby minimizing toxicity.
Alternative to Surgical Clips: While surgical clips are sometimes used, gold seeds are generally easier to identify on daily CT scans and provide superior, stable tracking. In summary, the markers do not mark the prostate gland itself, but rather the empty space where the gland was, allowing for accurate, daily targeting of the area at risk for recurrence. As far as my situation Google said the markers make it more accurate so I am left wondering why my bladder got nuked/my stomach is toast & I have to run to the bathroom 10 times a day if the markers made sure other things were not radiated. Makes me wonder just how much they help in any situation. Tell your husband Good Luck for me !!!!

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@suzdog Well, I think you answered your own question; the gold markers act as the beacons for the beam to follow; where they go, so will the radiation.
So they really do not perform as well as an MRI guided machine which actually turns off if the gland/bed moves out of the predetermined target range.
I think @bens1 can address this much better than I can.
My RO at Sloan used no gold markers for SRT; he explained that the simulation visit was the template for all future sessions, so STRICT adherence to full bladder/empty rectum was paramount.
I think the gold markers do serve a purpose in primary treatment for targeting purposes, but still can’t see their usefulness in a salvage setting - especially when the pelvic nodes are being hit as well. Just my thoughts,
Phil

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Profile picture for surftohealth88 @surftohealth88

@heavyphil

Geeezzz, now I wonder why RO doctor told my hubby that he needs gold markers inserted when we had a consult about possible adjuvant @@ ! RO is well known big shot in the area but now I am freaking out and wondering if we should look for another RO *sigh
Honestly ...

Jump to this post

@surftohealth88 Don’t freak, Surf! Just ask him WHY?
I assume treatment will be to the bed plus the nodes so…?
I am sure there are reasons for this but I can’t figure what they are since I am not a RO and my grasp of nuclear medicine is limited.
I am sure you will get clarity on this!
Phil

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Have you tried working with a pelvic floor physical therapist? For at least five years before my prostate cancer diagnosis I had a similar issue to you in that I urinated at least 15 times a day or more. It's what finally led me to a urologist.

I thought PC treatment would fix this issue (I don't know why since the bladder is a different organ--I guess I forgot everything from my high school anatomy class) but it was still the same afterward. I did get post radiation burning but that went away.

My urologist sent me to a pelvic floor physical therapist who taught me a lot of different exercises (not just keels) that helped somewhat. I'd say I'm down to urinating about 10 times a day which is an enormous improvement (but still annoying).

REPLY
Profile picture for suzdog @suzdog

@surftohealth88 My pleasure. I didn't think your remark thru to realize the prostate is gone and you were talking salvage radiation. Anyway, here is another google explanation. A radiation oncologist (RO) would recommend gold markers for salvage radiation therapy even without a prostate gland because the markers serve as essential, fixed reference points to track the precise location of the prostate bed (the area where the prostate used to be). Despite the lack of a gland, the target area can still move slightly day-to-day due to bladder filling or rectal gas, making precise targeting crucial for sparing healthy tissues. Tracking the Surgical Bed: Following a radical prostatectomy, the remaining anatomical structures (the "prostate bed")—including the bladder neck and anastomosis area—can move. Gold markers remain stable in this soft tissue, acting as a reliable, radiopaque surrogate for that area.
Precision in Image-Guided Radiation Therapy (IGRT): Salvage radiation requires high precision to kill potential residual cancer cells while sparing nearby healthy organs (rectum and bladder). Gold markers allow for daily image guidance to ensure the radiation beam is perfectly aligned with the target.
Reduction of Margins: Using markers enables the RO to use smaller safety margins. This means they can deliver a high dose to the target area while reducing the radiation dose to surrounding tissues, thereby minimizing toxicity.
Alternative to Surgical Clips: While surgical clips are sometimes used, gold seeds are generally easier to identify on daily CT scans and provide superior, stable tracking. In summary, the markers do not mark the prostate gland itself, but rather the empty space where the gland was, allowing for accurate, daily targeting of the area at risk for recurrence. As far as my situation Google said the markers make it more accurate so I am left wondering why my bladder got nuked/my stomach is toast & I have to run to the bathroom 10 times a day if the markers made sure other things were not radiated. Makes me wonder just how much they help in any situation. Tell your husband Good Luck for me !!!!

Jump to this post

@suzdog
Wow - thanks so much for this wonderful summary and detailed information about gold markers < 3 !!! I am sure that it will help many other members here since this question about their usage (where and how) and in what instances they are used was asked often but answers were usually somewhat contradictory and all over the place. Now we know that they are used both for initial RT and as well as for salvage radiation and are supposed to help with precision in both instances.

I am so very sorry to hear that you have some lasting side effects : (((, my heart goes to you : (. Doctors usually dismiss those kind of complains as minor (proctitis or cystitis, etc) since it is in their opinion just "some burning" and "some discomfort", unless they can observe extensive ulceration and they do not understand that strong burning sensation is extremely painful and disruptive in so many ways. Frequent bathroom trips cause irritation of the whole area even MORE so : ((( and one always has to be on a lookout for bathroom and it disrupts normal outings which in return can effect mood : ((.

How long ago you had your RT treatment ? : ( Did doctors offer any concrete advice of how to ease your side effects or offered any medications to help with those ? : (( Is your bladder the biggest source of pain or those "10" times involve bowel movements ? : ( I am asking since I know a lot about herbs and such and thought perhaps there is something that may at lest somewhat ease your discomfort : (((. *sigh

Once again, thank you for finding time to google about gold markers and to share it here and special thanks for well wishing for my husband < 3. I will extend your kind regards and I know that it will make him smile with gratitude :).

REPLY
Profile picture for surftohealth88 @surftohealth88

@suzdog
Wow - thanks so much for this wonderful summary and detailed information about gold markers < 3 !!! I am sure that it will help many other members here since this question about their usage (where and how) and in what instances they are used was asked often but answers were usually somewhat contradictory and all over the place. Now we know that they are used both for initial RT and as well as for salvage radiation and are supposed to help with precision in both instances.

I am so very sorry to hear that you have some lasting side effects : (((, my heart goes to you : (. Doctors usually dismiss those kind of complains as minor (proctitis or cystitis, etc) since it is in their opinion just "some burning" and "some discomfort", unless they can observe extensive ulceration and they do not understand that strong burning sensation is extremely painful and disruptive in so many ways. Frequent bathroom trips cause irritation of the whole area even MORE so : ((( and one always has to be on a lookout for bathroom and it disrupts normal outings which in return can effect mood : ((.

How long ago you had your RT treatment ? : ( Did doctors offer any concrete advice of how to ease your side effects or offered any medications to help with those ? : (( Is your bladder the biggest source of pain or those "10" times involve bowel movements ? : ( I am asking since I know a lot about herbs and such and thought perhaps there is something that may at lest somewhat ease your discomfort : (((. *sigh

Once again, thank you for finding time to google about gold markers and to share it here and special thanks for well wishing for my husband < 3. I will extend your kind regards and I know that it will make him smile with gratitude :).

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@surftohealth88 My treatment ended in Feb 2025. My RO offered no advice and pretty much blew me off when I messaged him about something else. I had to check in with a different RO that I saw once a week during treatment per their rules. The side effects then were frequent urination and stinging which he recommended some stuff to try that really didn't work. My Urologist has been the most helpful with the effects since then in explaining the nerve damage to the bladder. The nerves that make it contract don't work anymore so it doesn't empty all the way. He prescribed Flomax to help but it didn't make that much of a difference. Research says that may improve within 3 - 6 months which I passed a long time ago so it maybe permanent damage. As far as bowel movements with the gas I get all the time I never what will come out but I average doing that at least 3 times a day. Not much comes out all the time but it still happens whenever. Good news is I have never been so regular, no constipation here which happens to some people that get clogged up back there from this treatment. I'd rather have my issue than that. Thanks for the suggestion of herbs. 😃 The wife has been giving me stuff as she is really into that stuff as well. Unfortunately this radiation stuff seems to trump everything. I can only hope things get better with time as people on here have mentioned. All the Best !! 😋

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Profile picture for scottbeammeup @scottbeammeup

Have you tried working with a pelvic floor physical therapist? For at least five years before my prostate cancer diagnosis I had a similar issue to you in that I urinated at least 15 times a day or more. It's what finally led me to a urologist.

I thought PC treatment would fix this issue (I don't know why since the bladder is a different organ--I guess I forgot everything from my high school anatomy class) but it was still the same afterward. I did get post radiation burning but that went away.

My urologist sent me to a pelvic floor physical therapist who taught me a lot of different exercises (not just keels) that helped somewhat. I'd say I'm down to urinating about 10 times a day which is an enormous improvement (but still annoying).

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@scottbeammeup No I haven't tried any exercises. Thanks for the suggestion, I will look into that. You sound as bad as me with the frequency and I agree, it is so annoying always planning where is the next bathroom when I am out & about. It sucks but I am still on this side of the dirt so I am not complaining. Hope things get better for you. All the Best !!

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