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Posted 10/27/2021 4:10 AM (GMT 0)
Have been checking in on this forum since cancer surgery in 2010. Lots of good information that has helped me in the past. Would like your take on possible next steps if any.

Had Robotic assisted prostate surgery January of 2010 at the Mayo Clinic in Scottsdale Arizona. All PSA tests have been less than 0.05 until 3/19/19. The following shows the psa trend after that date. All tests were at the same lab. I realize the psa is very low and doubling time looks to be pretty long. Don't want the spark to turn into a big fire.
3/19/19 0.05
8/21/19 0.05
11/13/19 0.06
2/10/20 -0.05
9/10/20 0.08
2/10/21 0.10
6/2/21 0.10
9/13/21 0.12
Part of the Pathology report follows:
1.4 cm Adenocarcinoma left side, Gleason 4+4=8
No involvement of periureteral glands
Nine lymph nodes negative for carcinoma.
Carcinoma does not extend into the posterior capsule
Distal and proximal periureteral margins are negative for carcinoma.

My Urologist told me my only two options were to wait until the psa was high enough for tests to see location of the cancer or take a chance with salvage radiation and hope there are no negative side affects. He said that he is not a fan of hormone treatment at such a low psa. Have been fortunate that the only lasting problem from surgery is ED. I am 72 and really don't want to go back to no control of bladder I had for several months after the surgery.

Mudcat
Posted 10/27/2021 11:50 AM (GMT 0)
Mudcat,

So it sounds like your dr is on top of things.

I would be torn. On the one hand that is a slow rise. On the other it was a gleason 8. Its great that you had such a long remission from primary therapy.

Radiation to the prostate bed along with 6 months of adt might finish it off. The combo of hormone therapy and radiation has proven itself to be superior to radiation alone.

But really, they don’t know where it is. Just zapping the prostate bed is a good logical guess on their part. So you spin the wheel for a cure but radiation does have side effects. I have had loose bowels for two years since radiation (metamucil however manages that). 6 months of hormone therapy is not horrible because it has a beginning and an end. If you exercise regularly you can beat most of the side effects associated with hormone therapy but it hits some guys pretty hard. There is a new hormone therapy that comes in a daily pill that you can simply stop taking if the side effects bother you.

A psma pet has a ~30% chance of detection once you reach a psa of 0.3. You might be at that level in about 2 years assuming your doubling time is about 24 months.

So that is some additional background info. Good luck with your choice.
Posted 10/27/2021 12:20 PM (GMT 0)
Here is an older discussion on HW about how to time salvage radiation. Evidence suggests that a PSA of .03 was a good threshold; if PSA reaches .03 it is most likely going to continue rising, but that is also early enough to catch it before it spreads.

https://www.healingwell.com/community/default.aspx?f=35&m=3495340

Post Edited (fiddlecanoe) : 10/27/2021 6:49:03 AM (GMT-6)

Posted 10/27/2021 12:35 PM (GMT 0)
Well past .03 and now 11 years after surgery with a long smoldering G8 diminishes greatly the probability the cancer is only in the SRT radiation field. Without confirming it could be for naught as your doctor says.
Posted 10/27/2021 3:21 PM (GMT 0)
Twotall, seems to me you've had a clear rising trend for over a year. And yet, as JNF said, seems theres a decent chance its out of the field of SRT. So yeah, its a tough decision.
I'd be asking the RO (and probably another Dr or two including an MO that focuses on PC) what they think the chances are that SRT to the prostate bed will find it and kill it.

I asked that question of my RO when i had a rising PSA for a year, but was 3 years out of surgery. His answer was 80% and that helped me decide to move to SRT + ADT with my PSA at .08. No long term side effects
There are studies that indicate the earlier the better IF its in the prostate bed.
Posted 10/28/2021 1:55 AM (GMT 0)
TwoTall,

I'm so sorry you're in this position. One phrase that jumped out above and gave me pause: JNF's statement that a long-smoldering G8 "diminishes greatly the probability the cancer is only in the SRT radiation field."

When my husband's PSA first became detectable about 6 years post-RALP, we were told that it was a positive thing that there was such a long time for the PSA to become detectable. Now I'm re-thinking that: with that length of time comes the real possibility that the cancer has already escaped the prostate bed.

We are now trying to figure out if or when my husband should start salvage radiation. HIs current PSA is 0.1. My husband's doctor said that it was reasonable to start radiation treatment, and it was also reasonable to wait to see if the PSA will continue to rise. Not much guidance unfortunately. Interestingly, the one thing he WAS adamant about was that DH have hormone therapy along with the radiation.

FWIW, my husband had G7 (3+4), with focally positive resection margins. Doubling time is roughly one year.

Good luck with your decision!
Posted 10/28/2021 3:17 AM (GMT 0)
Really appreciate the input from the group.

One day I am ready to wait this psa thing out, next day attack. Don't have a clear vision of which way to go but want to make an informed decision.
Think I will seek a second opinion from the Mayo Clinic in Scottsdale. The doctor that performed the surgery is no longer there but plan on making an appointment and visit with someone new.
My mother is 89, her parents were 92 and 96 when they passed so have the potential of a few more years if can keep the PC at bay.

TwoTall
Posted 10/29/2021 1:42 AM (GMT 0)
I decided to attack after my surgery, will never know if it was a waste of time or not. Just looked at the odds and information I had, and it appeared to be the right thing for me.

The fact that you got 10 years before a PSA rise means you made a good decision to me in hindsight. Most understand that cancer is rarely defeated for good so it is a cross we all carry. I think I would want to wait for your PSA to increase a little and get the newly approved PSMA PET scan. Take a look at GeetarMan’s thread about his experience in the last week or so.

Your PSA could stabilize at some point, a PSMA scan could show a local occurrence that can be zapped, or your PSA could keep rising and you go on to the long term therapy. 2 out of 3 possibilities are not that bad so you may want to check them first before shooting in the dark at shadows. Just my random thoughts
Posted 10/29/2021 11:51 AM (GMT 0)

Hello, TwoTall ----

I think it would put your mind at ease --- having that consultation at Mayo Clinic in Scottsdale.

I am well served by Mayo Clinic in Rochester, Minnesota --- and I travel there about twice a year to update scans and consult with my team there.

I call them my "second set of eyes" ...

Meanwhile, stay in close consultation with your local medical team --- and it's to your benefit to keep tracking PSA and lab scores on a timely, consistent basis.

That builds consistent data for your doctors --- and helps them assess fluctuations or trends.

Stay on course, as you have been --- stay steadfast ---- and I think a consultation at Mayo Clinic in Scottsdale is a proactive plan.

Keep in touch with us here --- let us know how you're faring!

CYCLONE --- # Iowa State University
Posted 10/29/2021 5:03 PM (GMT 0)
A recurrence after so many years is usually less aggresive than what we usually expect after an early recurrence with a high Gleason grade. Although the data show some fluctuation, your doubling time seems to be relatively long. Statistically, you have a good chance to be free of clinical progresssion for many years. Therefore, I am not sure of the utility of radiation in this situation given its possible toxicity and independently of its chances to be "curative". (By the way, I miss a thread about secondary effects of SRT, particularly urinary issues, in this forum).
If psa starts to grow faster you can detect any possible single focus to radiate or you can possibly keep it at bay for a long time with ADT. Age is also an important factor to decide since it is clear we will not be here for ever anyway.
Posted 10/30/2021 12:04 AM (GMT 0)
You could try a PET scan now and see it shows a spot.
Posted 10/30/2021 12:33 AM (GMT 0)
Twotall,

We are nearly mirrors, with these differences in mine: 3+4=7, RALP 2012, uPSA started detectable 2017 and now sitting around .11, and I had one margin Epstein rated at 3+3=6. One grandmother was age 104 and her sister 105.

Somebody said...
My Urologist told me my only two options were to wait until the psa was high enough for tests to see location of the cancer or take a chance with salvage radiation and hope there are no negative side affects.

My uro gave me same two options, with him preferring option 1. I think it may be what is now called "MDT", or "metastasis directed therapy". Have to ask him when seeing him for annual appt. in Dec. When COVID lifts some more, I'll probably wander off to MDA and get a second opinion.

So, yeah, this is a really frustrating position as far as knowing what to do and when. Sorry, I have gone around and around, and no decision yet. Cannot even guess how it will turn out, good or bad...

Robert
Posted 12/13/2021 9:54 AM (GMT 0)
Twotall,

Thought I'd add some other info from two additional consults. (I've been meaning to create a new thread but haven't gotten around to it.)

For a second opinion consult, we met with someone at Memorial Sloan Kettering. Here is the bottom line from that consult:

--A recent study shows that radiation to the prostate bed + radiation to the pelvic lymph nodes + short course of ADT = best outcome (even for men with numbers similar to my husband: 0.1 PSA; G7 (3+4)).

--He recommends waiting until PSA hits 0.2, then do advanced imaging so there's more info about my husband's lymph nodes. At 0.1 PSA, there's only about a 5% chance that the scan will show something. At 0.2 PSA, PSMA Pet scan has 30 to 40% chance of showing something. (That means that, if there's something there, there's a 60 to 70% chance that the scan won't pick it up--but he'd still recommend it.)

--This doctor was concerned about radiating lymph nodes because my husband has a history of ulcerative colitis, and the LNs are right against the bowel. In my husband's case, the LN dissection didn't provide much info since only one LN was removed and tested. (Note that doctor mentioned that had my husband had RP @ MSKCC, they would have removed 20 lymph nodes.)

--We mentioned that we had read that there is very little benefit of hormone therapy for men with very low PSA. He said that that's not right at all. Hormone therapy helps prevent distant metastasis.


After talking with MSKCC, we thought that waiting and then getting a scan made sense. Our doctors do not have access to the PSMA Pet scan, so we talked with someone at UCSF. Here's his bottom line:

--He referenced same study that radiation to the prostate bed + radiation to the pelvic lymph nodes + short course of ADT = best outcome for most men. He said that it's not clear yet that men with numbers similar to my husband would benefit. Over time, as follow up is longer, he believes that it will show that men like my husband will benefit from all three at same time.

--He does not see the benefit of a scan. The scan is unlikely to show anything and won't change the treatment recommendation.

--UCSF does, however, have a great guy who does pelvic ultrasounds, and has been known to find PCa in men with PSA as low as my husband's (0.1). Or we could schedule a PSMA Pet scan now and see what happens.

--He too was concerned about my husband's history of ulcerative colitis but thought that radiation was do-able.

I hope this is helpful, Twotall. Good luck with your decision.
Posted 12/13/2021 10:50 AM (GMT 0)
My boyfriend was in a similar situation this past summer. Surgery 12/12. Original gleason was 3+4=7. Psa became detectable after 7 years. Slow creep over 2 years to .13. Pulled the trigger on SRT w/o ADT. Back to undetectabe at 3 month PSA. I have read that having SRT at .2 or lower is optimal. Also, radiation was really a non-event for the exception of fatigue. We didn't want to overthink it and miss an opportunity. We hit the prostate bed and kept our fingers crossed. So far, so good.
Posted 12/13/2021 3:50 PM (GMT 0)
Mudcat,
When I was confronted with my SRT decision, I felt it was best to throw everything at it, given that nothing showed up on the scan and it was my last shot at eradicating the cancer. I instructed my RO to radiate the whole pelvis with lymph nodes and do 6 months of Lupron. I’ve been undetectable for 2 1/2 years now. I have no noticeable, lasting side effects from the SRT. Was it the right decision for me? Time will tell, but it seems to have knocked the cancer back for now, anyway. I wish you the best.
Posted 12/15/2021 2:54 AM (GMT 0)
Keep in mind that hormone therapy puts selective pressure to favor survival of cells that are hormone independent. Hormone therapy also produces SE and wear and tear on the body. Not an easy choice. Best wishes.
Posted 12/15/2021 4:10 AM (GMT 0)
Went to my appointment at the Scottsdale Mayo Clinic a couple weeks ago. I had requested to be able to visit with a MO or RO concerning my slowly increasing PSA numbers. They scheduled the appointment with a urologist instead.
His nurse, a very nice young lady, said he wanted her to do a recital examine. She said no problems found.
The urologist was also nice, retired navy so we had something in common. After reviewing my last two years of psa tests he said that he thought that there was a high chance the cancer was located in the prostate bed. Also mentioned that at the present level there would be a low chance of detecting cancer on any of their scans. He remarked that my DT is pretty long so would watch and wait. If the psa advances to the .20 to .25 range he would refer me to an RO at the Mayo Clinic.
I asked a lot of questions and was ok with most of his responses except the one concerning psa levels of .20-.25. Would appreciate any input on that question.

Thanks
TwoTall
Posted 12/19/2021 7:23 AM (GMT 0)
Hi TwoTall,

One thing I've read is that urologists tend to have a higher trigger number for starting salvage radiation than the numbers that ROs use. I'm pretty sure there was a survey that showed this, and it was posted here on HW, but I can't find it now. That being the case, I would tend to downplay the urologist's advice.

We've talked to a number of doctors about rising PSA post-prostatectomy. One thing on which they all agreed is that the studies show that there is no change in outcomes as between starting radiation at 0.1 vs 0.2--but if you start radiation after 0.2, the outcomes change.

Notwithstanding these studies, one doctor did advise my husband to wait until his PSA hit 0.2 so that he could have advanced imaging. That sounds similar to the advice you're receiving. Keep in mind that if you wait until 0.2, treatment won't start immediately. It will take time to get an appointment with an RO, then to get imaging, then to decide what to do. Our doctors said that it takes about 6 weeks from deciding to treat to actually treating--but it might be different for you.

For us, the benefits of waiting until the PSA hit 0.2 were not worth the risks, especially because we have a concern that my husband's PSA number might not be a good predictor of extent of disease.

You'll have to make your own decision about treatment taking into account the amount of risk you're willing to take, how aggressive you want to be, and how you'll feel in the future if the decision you make turns out not to have been the best. As we all know, it's a fine balancing act. Good luck!
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