Jim had his HDR Brachytherapy at UCSF last October. We haven't confirmed, but the RO indicated in January that he probably will not do further RT to Jim's few lymphnodes and suspicious bone spot. Also unable to do whole pelvic radiation due to hardware in his pelvis and hip and of course prior RT 30 years ago. Probably a good thing since Jim hasnt felt well since his HDR, until the last few days. The RT was way harder on him than we expected since it was "targeted". He is finally feeling better and says he hasnt felt this good in a couple years. (this after feeling so bad for so long that he was threatening to stop treatment). Jim's PSA in October pre HDR was <0.04. It was the same in January and now again in March. Would it be appropriate to ask his MO if he can go to three month testing at this point? Would like a break from the monthly psa anxiety. Anyway, not sure what I'm really looking for as I can ask his MO. Just felt the need to post. He lost his Dad (who lived here on our property with us for 16 years) in December, he was 89 and had a good long life with no physical incapacitates. Then Jim got a staph infection in January that didn't get cleared up until a week ago. So I'm completely grateful for the fact he's feeling so much better and hope to get a short break from the "drama". Thanks for listening.
PSA Testing Intervals: Jim had his HDR... - Advanced Prostate...
PSA Testing Intervals
Why do they ask for monthly PSA tests? With Lupron and abiraterone, his PSA isn't likely to increase that quickly.
Thanks TA, that's good to know.It's very odd. Jim's RO is very engaged and checks in. Jims MO hasn't contacted us in a year, but she does respond to my messages in MyChart. Jim's RO ordered PSA every 12 weeks. His MO put in orders for monthly, along with his Metabolic panel. No explanation.
So I will definitely inquire.
Thank you again
Hello AgainTalked to Jim's RO today and said no more radiation. He said that with the met to the bone, the data/studies do not support survival benefit to counter the high risk of radiating the lymphnodes. He said that it would be experimental and too risky with Jim's history. He said there's no point of radiating the bone without doing the lymphnodes. So all or nothing.
He also said we need to talk to Jim's MO, but continue monthly bloodwork to watch Jim's liver due to the Abiraterone.
Dr Osama Mohamad at UCSF.
Wanted to update you.
Thank you TA for all you do on this forum.
I agree. Once it's in the bone, the value of radiation to the bone is unknown. It is only worthwhile trying if it is safe. And if it would be unsafe irradiating his lymph nodes too, there is really no point.
That is a tremendous relief to me that you concur. They originally were going to do only the bone met and not the lymphnodes. Then months later when they said lymphnodes also, I was taken aback.And surprised me again when he said all or nothing.
I have mixed feelings. Have read such a huge gamut of experiences, treatments, and outcomes on this forum, part of me was let's floor it.
And the bigger part of me is QOL.
And since it's HIS decision, none of that matters.
Jim is totally relieved, as he says he doesn't want to spend the time he has left with holes in his bowels.
Again, I am grateful for your input on this forum. Thank you for your time.
With readings that low, I was switched to 3mo. and then 6 mo. PSA until it increased. Then 1 mo. without change until PSADT shortened drastically.. I see no reason a request of testing every 3 mo. would be declined.
My RO suggested three month PSA testing intervals. After HDR-BT, PSA can fluctuate for many months as it reaches nadir and beyond, as PCa cells trying to replicate die because of damaged DNA from radiation.
That's interesting, did not know that. Maybe Jim's will go lower than <0.04 ?I guess "undetectable " is good enough.
Do you do a monthly Metabolic panel?
Yes, anytime you see the “<“ sign, the PSA is below the detection limit of the assay—so that’s good. Fluctuating PSA is common after radiation, see my profile to see how it bounced around in the last year since stopping ADT. I would only do metabolic panel every three months, unless something is a concern, such as liver toxicity when starting Zytiga, etc. Main things to track are PSA, T, ALP, and CRP. Three years after HDR-BT, I’m going every four months rest of year, and biannually next year.
What a journey you've been on!
Glad things are going so well and thank you for sharing the information.
Thanks! Just reading your bio, wondered if you are doing pelvic radiation (IMRT) as a followup to HDR-BT to cover the suspicious LN's? That was in my treatment plan to target a suspicious mesorectal note.
Jim had testicular cancer 30 years ago and due to some issues caused by his primary care physician, he had radiation from below his sternum to his thighs. On top of that, he has a titanium plate and extra large screws across his pelvic bone and his pelvis area (a horse wreck 17 years ago) so they aren't doing his pelvis. They are considering his lymphnodes and suspicious bone spot (which only showed up on a psma scan), but it's doubtful. He also has a metal hip socket and the bone spot is adjacent. They are saying his case is highly complicated. They only did HDR BT because the EBRT they planned to do to the prostate was unable to map due to all the hardware. Dr Mohamad was going to run some scenarios and meet with the tumor board, but we're pretty certain his RT is complete. Probably better this way. The BT knocked him back so hard. We thought since it was so localized, his effects would be minimal. We were wrong. Fortunately though, he's had no major urinary or bowel issues other than frequent urination and constipation. Anyway, I'm running on. Sorry
Thank you again for your input!!
I see, glad to see EBRT was at least considered. Sounds like you have a good team. Congrats to Jim for surviving TCa-- exceptional...! Hope he continues to recover-- diet and exercise helps a lot. Cheers-- Tim
Thanks so much. What is TCa?
Just my abbreviation for testicular cancer. I imagine that was a whole different type of treatment.
Oh, makes sense, sorry. Yes it was surgery, radiation, done.
He's absolutely seen that diet and exercise is crucial...he stays very active and partly because he doesn't have a choice, we have horses to ride and cattle to feed and all the work that goes with it.
He said the thing about the TCa was he was sick and felt terrible, but was 100% good within six months. He said it's so much harder now feeling rotten and knowing that he won't ever get better. He is working on focusing on the positive things we've got in our life...he's still alive and can still ride a horse so there's that.
If the cancer has a short PSADT < 3 months , monthly PSA could be indicated. Apparently with the present treatment the PSA is stable and not monthly PSA are required.
He had a test in October pre HDR BT. Then did not do a other one until January and it was the same as before radiation. He is also on a 3 month Lupron shot and Abiraterone 1000mg Daily. Its been a year now.
I wish all the best. I can’t/won’t tell you what treatment is needed. I can only relate my path. ROs managed my original diagnosis in 2003. The day in 2004, that I went metastatic, I was referred to a MO who managed my cancer. My treatment was chemotherapy with Lupron/Eligard; plus some orals in a six month clinical trial.
Never had any of the new scans or new silver bullets. Simple nuclear bone scan and soft tissue CT Scan - about 18.
Gourd Dancer
Thank you for sharing, it's so encouraging to know what's possible and that there are many different paths that are successful. Really appreciate it.
So if I understand it correctly - Jim has had ADT, then HDR-BT? And he's continued on ADT?
There was a very interesting recent talk I listened to about PSa "bounce", especially for men who had BT.. here it is: youtu.be/ogDhQv-1Axo - the crib notes on it are (from memory) - over 60% of men taking BT have a bounce, typically around 18 months after treatment. That first bounce may resolve in a few to 6 months, only to be followed by another bounce later on (2-4 years). The bounces make patients and doctors nervous, but really don't seem to matter as to overall outcome from the BT. Other radiation treatments also have bounces - but not to the extent that BT has.
It's worth watching. If the PSa numbers you are giving are while Jim is still on ADT - they are excellent. If he's been off ADT for at least 6 months - these numbers indicate a very successful treatment IMHO, and there is no reason for 1 month interval PSa tests (again, IMHO.)
I think you'll be reassured by the video and you might suggest to the RO who is ordering the multiple PSa tests to listen to it and comment on how this relates to Jim's testing. It might be the RO has a very good reason to order frequent testing, or it might be that they aren't considering the "bounce".. which is quite common for BT.
You might want to note the video is for people with radiation "monotherapy" not with ADT as part of their treatment. The video applies to very few of us if any in the Advanced forum. I mention this not as a critique of you offering it as info just for clarity.
Thanks, that's a great clarification.. I would guess that it only refers to a mono-therapy (BT), some papers I've seen have referred to RT (of various sorts) + ADT and mentioned bounces occurring sometime after the ADT was finished typically about when testosterone starts normalizing (my case according to my 3 MD's - uro-O, RO and MO).
Yes you are correct. Lupron started Jan 2021. Abiraterone started Mar 2021. Unable to do pelvic radiation or EBRT to Prostate. Decided on HDR BT and had that for two days in October 2021 at UCSF with Dr Carrol surgeon and Dr Mohamad RO.
First PSA post treatment Jan 2022.
RO ordered 12 week tests going forward.
MO Dr Hala Borno ordered monthly going forward. So I'm going to clarify before next blood draw.
The original plan was 24 months of Lupron & Abiraterone, but thinking it's probably permanent.
Thank you very much for your time and detailed information.
My vote is every 3 months......
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 03/05/2022 6:53 PM EST
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