What care, tests, treatment and follow-up do you have after radiation?

Posted by jc76 @jc76, Aug 3, 2023

I am interested in others experiences in what they had for medical care after receiving radiation treatments for prostrate cancer.

I was surprised that the only medical care I was programmed for was PSA testing every 3 months first year. Every 6 months second, and once a year at third. No MRI, PET Scans, biopsies, etc.

I do have access to oncologist/radiologist via portal, phone for appointments or asked questions and appointment if needed.

Is the above what most of you found as after care and testing after finishing radiation treatments. You would think there would be some type of MRI, PET scan, biopsy, done not just monitoring PSA. But don't have the feedback of what others were given as after care to know if not the norm.
I am only 1 month out from having 30 radiation treatments with pencil beam proton radiation treatments.

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@mikewo

I finished my 5 proton radiation treatments at Mayo Phoenix 103 days ago and my three-month PSA was undetectable and was 2.9 when my cancer was found.

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Great! I was to do 5 treatments but they failed in the Gel placement. Had to wait. No gel placement on round two- thus 20 treatments at a lower dose.

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@brentbackus

Great! I was to do 5 treatments but they failed in the Gel placement. Had to wait. No gel placement on round two- thus 20 treatments at a lower dose.

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I did do the gel and Dr. Frendel put it and the markers in correctly.

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Got 5 sessions of radiation only for a 9 mm lymph node in paraortic region. PSA was 1.1 before radiation. Getting PSA today. I do not expect a major drop but it should be lower than 1.1 hopefully. Finished radiation a month ago.

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@mikewo

I finished my 5 proton radiation treatments at Mayo Phoenix 103 days ago and my three-month PSA was undetectable and was 2.9 when my cancer was found.

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Great results. Wish I could have done the 5 treatment option but Mayo Jacksonville does not have proton radiation treatments yet.

I seems the ongoing PSA test are standard for after treatments follow ups.

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To answer one of your questions: I've had radiation treatments twice. (I have Stage 4 PC. It has spread). Radiation is a piece of cake compared to any of the other treatments I have received. The only issue was the inconvenience of driving to central Austin everyday. No pain, no side effects, no additional treatments. Piece of cake.

I am a little surprised they have not scheduled a biopsy or PET scan for you. I thought that is how they found where the cancer has spread. But I am not a doctor. WTS: Your radiation oncologist may have the ability to do scans at their office and they can locate the cancer before they start the radiation. Just a thought.

And, one of the Worst experiences I had with all this was the damn biopsy (and I had surgery and chemo). If they can detect it without a biopsy consider yourself lucky.

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@cesar52

Got 5 sessions of radiation only for a 9 mm lymph node in paraortic region. PSA was 1.1 before radiation. Getting PSA today. I do not expect a major drop but it should be lower than 1.1 hopefully. Finished radiation a month ago.

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Radiation does not drop PSA instantly, it gradually drops.... Radical prostatectomy should be zero PSA

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@vjlvpjalways

Radiation does not drop PSA instantly, it gradually drops.... Radical prostatectomy should be zero PSA

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The goal is less than 1.0 for most people. It may take several months for the PSA to drop. I am getting a PSMA PET SCAN again in October to assess response to Radiation. I hope I do not need to be back on ADT or any other treatment, but if I need it, I am all for it. It’s a battle.

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I did five PBT treatments at Mayo Rochester in Jan/Feb 2020. I also did a 4 month stint of ADT. PSA on diagnosis 8.3.
Follow up has been PSA testing, initially on 3 month interval, now on (I believe) 6 month interval.
My PSA numbers have dropped from late 2020 2.5 to current value of >.10.

I had a PSA test done by a different lab and had a wildly different number. I think there is a benefit in using the same lab consistently. PSA numbers can be affected by infection, recent orgasm, and, reputedly, some types of exercise - like bike riding.

I personally am fine without getting scans until there might be some change. If there is a change, my understanding is that the % of the change over several tests is the most diagnostic.
I'm delighted that there are scans out there that hadn't been approved when I first finished radiation.
I never say "I'm cured" - I say "I'm in remission and I hope it lasts the rest of my life" at age 73 maybe 20 years.

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I wish I would have been lucky and lived near Rochester or Phoenix for Mayo. I did mine at UFPTI. At UFPTI the follow up is the same.

I was also told by several providers and research I did that the PSA lab test should be done at same facility each time. Then went into depth about difference that can be from one lab to another and even one test vile to another.

The recommendations also mentioned not bike riding for 72 hours prior to PSA test and one stressed no vigorous sex also prior to PSA test. First time I had heard this about sex.

My primary care doctor at Mayo will be ordering PSA test as was doing them every 3 months anyway. I will have them done at this facility only even though have a closer lab to adhere to advise I got.

I agree I hope my radiation will be all that I need for rest of my life also. I hope though to be a centurion.
Good luck,

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