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Is it time to see a Radiation Oncologist?

Rams91 profile image
31 Replies

Hi,

I had surgery in December 2021 and my PSA has been rising steadily since. My reading since surgery were:

Jan 2022 0.025

Apr 2022 0.023

July 2022 0.055

Nov 2022 0.059

Feb 2023 0.085

All done at the same lab and same time of the day. Although still under the 0.1 threshold that is technically defined as undetectable per my surgeon, I'm thinking maybe it is best to see a couple of ROs for a consult to evaluate my options given the steady rise (and fast doubling time) of my PSA. My pathology also showed positive margins. Suggestions as to what to ask and whether to proceed with early salvage treatment would be appreciated.

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Rams91
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Tall_Allen profile image
Tall_Allen

Here are some questions:

prostatecancer.news/2017/12...

Rams91 profile image
Rams91 in reply toTall_Allen

Thank you, Allen. I am taking the questionnaire with me.

Justfor_ profile image
Justfor_

Disclaimer: I have a couple of strong personal opinions, like this one:

healthunlocked.com/prostate...

and also like to self experiment at the borders of SoC:

healthunlocked.com/prostate...

I am responding because I noticed with interest that your latest PSADT is a bit shorter than its past brief history, but more than that because this occurred during the Nov-Feb period, which I have first noticed on me. My PSA time series (posted bellow) is more comprehensive, i.e. monthly tests with re-tests if anything unanticipated surfaced. I can theorize that it can have to do with the fact that during winter the D3 production of our bodies is lower. Recheck PSA in a month because, if our cases share some similarity, the "bumpy" PSA range may be your next encounter.

Post RP PSA
Rams91 profile image
Rams91 in reply toJustfor_

Interesting and thanks for sharing your study Justfor. I'll check my PSA next month.

Murk profile image
Murk

IMO, jump on this and push for answers and a going forward plan. Your reading after suregery should all but non existent!

Rams91 profile image
Rams91

Came across the following study concluding that:

-ultra-sensitive PSA ≥0.03 is an independent factor, identifies BCR more accurately than any traditional risk factors, and confers a significant lead-time advantage. uPSA enables critical decisions regarding timing and indication for post-op RT among high-risk patients following RP.

-Defining failure at uPSA ≥0.03 yielded a median lead-time advantage of 18 months (mean 24 months) over the conventional PSA ≥0.2 definition.

Any comments on that from the experts?

ncbi.nlm.nih.gov/pmc/articl...

Hiker64 profile image
Hiker64

After a year of undetectable PSA mine is doing something similar to yours. I also had positive margins. Current PSA is 0.029. My RO is at Cleveland Clinic and he is saying to wait until it reaches 0.1 to begin any type of radiation therapy. I'm thinking it has a better chance of showing up on scans at that point.

Rams91 profile image
Rams91 in reply toHiker64

Hope yours stay low. I visited my RO last week. Shared my thoughts on uPSA > 0.03 study and SPPORT trials (thanks Allen) for a cure but it didn't take too much of a convincing with PSA <0.1 to start early treatment. He said my uPSA pattern indicates a definite BCR and there is no sense in waiting for it to go higher. Surprisingly, he wants me to get a PSMA test without me asking, followed by 6 weeks of IMRT to prostate bed and 6 months of Orgovyx. He said radiating the whole pelvic area causes more severe side effects.

Hiker64 profile image
Hiker64 in reply toRams91

One positive thing about positive margins is that it’s more than likely in the prostate bed. My radiation oncologist seems to think I could do without the ADT but I’m sure that will depend upon how fast my PSA continues to rise,,, if it does. My Decipher test results showed that ADT would not be very effective, but he says there’s not enough verification with that part of the test to depend upon it. Keep me posted on how things are going. I wish you the very best!

Rams91 profile image
Rams91 in reply toHiker64

Thanks. One thing I forgot to ask him and it was the Decipher test. Would it be beneficial to have one done now that the prostate is out?

Hiker64 profile image
Hiker64 in reply toRams91

I actually had two decipher tests. One before the biopsy and then one on the prostate itself after my surgery. The biopsy sample results were 0.79 but my decipher test on the prostate itself was 0.68 which is just above intermediate risk, but still high risk. I’m not sure if it was beneficial or not but I only had to pay $395 for the first test and $165 for the second. But in my case, my biopsy samples only showed a Gleason 3+4 and the final pathology on the prostate itself was a Gleason 8. I’m figuring that’s the reason they ordered the second decipher test.

Rams91 profile image
Rams91 in reply toHiker64

Thanks again. My insurance pays for it but I'm not sure what value it would add now that a salvage treatment is warranted based on the PSA velocity. I will ask the RO just in case. It may help him adjust the radiation parameters.

dans_journey profile image
dans_journey in reply toRams91

Hey Rams91. Sorry you're in this situation. I had a radical prostatectomy and 54 months later, my PSA returned at 0.05 ng/mL and started slowly climbing from there.

Regarding your doctor suggesting you have a PSMA PET scan at your very low PSA level, I would suggest that you look at the following paper to see how effective PSMA PET scans are at detecting cancer locations at various levels. With a PSA of <0.5 ng/mL, there's about a 40% chance the scan may see something (look at Figure 2 in the paper).

pubmed.ncbi.nlm.nih.gov/309...

Thinking that 40% is better than 0% if I don't get the scan, I had a PSMA PET scan at UCLA with my PSA at 0.23 ng/mL. The scan results didn't provide any useful information for a radiation oncologist to use to plan salvage radiation therapy. No areas "lit up" on the scan at all. At your current PSA level of 0.08 ng/mL—a third of my PSA at the time of the scan—I suspect you would have similar results.

My healthcare insurance carrier refused to pay for a PSMA PET scan until the PSA reached 1.0 ng/mL, so I paid the $3,300 out-of-pocket because I really was hoping to know that the RO was zapping in the right location. My PSA continued to increase, but at an accelerated rate, I went ahead and did 35 sessions of SRT with concurrent androgen deprivation therapy. My PSA going into the SRT was 0.36 ng/mL.

I get that PSMA PET scans are the latest and greatest, and that they offer superior results to anything that we had before. But they do have limitations, and it's important to understand what they are.

Rams91 profile image
Rams91 in reply todans_journey

Thanks dans_journey and I hope you are doing well. I am aware of the PSMA scan limitations with low PSA numbers, but as with your numbers, my RO says there is a 30% chance that it will help him plan better. We'll see.

dans_journey profile image
dans_journey in reply toRams91

Hey Rams. Glad to share and I hope your scan provides information useful to the RO.

FYI, I wrote up my experience with the scan in detail and you can read about it here:

dansjourney.com/2021/12/01/...

Good luck!

Neathuh1 profile image
Neathuh1

Hi Rams91. Based on my own experience with a radiation oncologist, I urge you to NOT undergo radiation until the location of the source of your increasing PSA has been positively located. When I asked my RO how he knew where to radiate, since nothing showed up on scans (this was 10 years ago when scans weren’t as accurate) he said he was taking his best guess. He radiated the spot where my prostate had become attached to my colon. Made sense to me although I was somewhat consumed by fear and would have believed about anything. Turns out the culprit was metastases in my lungs. The RO wasn’t even close. I subjected myself to 37 radiation treatments and their side effects for absolutely nothing.

Make sure they know what they’re aiming at!!

Good speed, brother.

Rams91 profile image
Rams91 in reply toNeathuh1

Thanks Neathuh1. I am getting a PSMA test prior to any treatment hoping it will show something. But at the same time, waiting for PSA to rise enough so the PSMA test can pick up something is risky.

Rams91 profile image
Rams91

It seems I will be heading for SRT even with the PSA <0.1. Reading about short and long term SRT toxicity on the bladder and rectum, is there a particular method of treatment that would be less toxic? For instance, what are the effects of HDR brachy as salvage treatment compared to 5-6 weeks of IMRT? I'm considering Georgetown hospital for treatment.

Rams91 profile image
Rams91

Follow up to my earlier post, I had a few more tests and appear to be on hold now. My uPSA in early April came in at 0.083 (slightly lower than earlier one), Decipher test on the whole prostate at 0.53 (intermediate) and PSMA PET last week was clear. My RO now says wait till at least a PSA of 0.2 for salvage therapy. Although not looking forward to it, I thought the threshold for surgery failure and starting salvage therapy was 0.1. That is if one is looking for a cure, but 'cure' seems to be interpreted differently among ROs. Is waiting till PSA at 0.2 the right approach?

Justfor_ profile image
Justfor_ in reply toRams91

Ok, bumpy range bellow 0.1! Thanks for the update. Good to know. Don't get surprised if by next month PSA goes down by some 10-15%. I wouldn't.

Rams91 profile image
Rams91 in reply toJustfor_

I sure hope so. The thoughts of ADT and salvage radiation scare me.

Rams91 profile image
Rams91 in reply toRams91

Update to my earlier post. Unfortunately, my uPSA keeps on rising and now at 0.097 ng/ml. Post surgery rise from 0.025 to 0.097 in 18 months. RO says not to concern myself with ultrasensitive PSA doubling times as it is invalid and instead see him if and when my PSA reaches 0.2 ng/ml. Although I would much like to avoid or delay Salvage radiation and ADT (I've had no adverse effects from surgery and would like to keep it that way), I'm not sure if waiting for 0.2 PSA will not cost me a shot at possible cure. What is the current threshold signifying a BCR post-surgery? Opinions please? Guidance Tall Allen? Thank you...

Background: age 63, surgery 18 months ago, 3+4 (40%), positive margin <3 mm, grade3), minor tertiary pattern 5 (,5%). Decipher score three months ago intermediate risk (2.5% 5 year and 5.3% 10-year risk of metastasis), PSMA/PET two months ago was clear.

doorknob5 profile image
doorknob5

After 40 months of post-RP undetectable PSA, my RO at Johns Hopkins wants to begin RT (and possibly 6-mo ADT) when my PSA reaches 0.010 (not 0.10). My first detectable and current uPSA is 0.009. The RO wants additional PSA readings to confirm the trend. Good luck with your treatment.

tn12 profile image
tn12 in reply todoorknob5

RT at 0.01??? That doesn't make any sense

doorknob5 profile image
doorknob5 in reply totn12

With adverse pathology at RP, it's adjuvant therapy or eSRT at detectable PSA. See NCCN guidelines PROS-6 and/or PROS-7, which states "monitoring, with consideration of early RT for a detectable and rising PSA." Best wishes to your husband.

tn12 profile image
tn12 in reply todoorknob5

Yes but 0.01 is undetectable.

doorknob5 profile image
doorknob5

I use the ultrasensitive PSA tests from LabCorp. My 3 to 4-month test results were <0.006 (undetectable) for 3-1/2 years since RP and now it's at 0.009. I believe that my RO views this as a rising PSA.

tn12 profile image
tn12 in reply todoorknob5

Read this:prostatecancer.news/2019/09...

doorknob5 profile image
doorknob5 in reply totn12

Hello tn12, thanks for the link. Here is another interesting article, although dated 2015.

pubmed.ncbi.nlm.nih.gov/254...

The author of the article goes on to say to the effect . . . any post-op uPSA at 0.030 ng/mL or greater defines "relapse" since 98% of the patients in the study were confirmed to eventually progress to BCR.

LowT profile image
LowT

I believe that article was referencing PSAs done at 3 months post op. Is that not correct?

LowT profile image
LowT

My journey. Holding steady at age 82. New enhancing nodule identified in L prostate bed one year ago. Unchanged one month ago. Two negative PSMA/PET -CT scans a year apart. sRT offered +/- ADT. For now doing supplements and watching. AS I guess. It's a waiting game to go with it or from it. Presently betting on with it. Of course that could change.

uPSA

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