What would you do if PSA stayed at 0.15 after prostatectomy?

Posted by tj1967 @tj1967, Aug 29 11:28am

Hi everyone,

I am 58 years old. I had a radical prostatectomy seven months ago and my PSA never dropped to undetectable levels. It has stayed at 0.15 for the past three months.

One doctor recommends a conservative approach with low dose radiation to the prostate bed only. Another recommends a more aggressive plan with radiation to the prostate bed, glands, and lymph nodes along with hormone therapy (relugolix for 6 to 18 months).

I am torn between avoiding side effects now versus hitting it hard to lower long term risk. Has anyone here faced this decision? How did you choose, and do you feel it was the right call?

Thanks for any insight. I would really appreciate hearing your experiences.

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

From my perspective, regardless of the path you take, accept it and embrace it as part of the gift life is. We can never be sure a decision we make is ”right” or “wrong”, only that other people and ourselves will pass judgment on it. Regardless of which decision you make, know it is a good one. Best to you on your journey…

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First off. This is only my opinion. I've been, somewhat, in your shoes when my PSA was staying in the low numbers area. When it stayed the same or close to the same for an extended period all was good for a wait and see. That wait and see turned in doubling and then it was time to determine a course of action.
Hope this helps.

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Profile picture for jeff Marchi @jeffmarc

One problem is You have not said what your Gleason score is. That is a major factor in deciding how aggressive one should be. It’s also a major factor in whether you should be on ADT and how long. The question is do you want to have progression free survival (PFS), if yourGleason is higher than 7 Then the more extensive radiation really makes sense as well as ADT.

The more extensive radiation gives you that longer PFS, And that radiation is not likely to affect your erections. All the spots that it would affect are already gone after surgery.. It’s the Orgovyx (Relugolix) (ADT) that will cause the ED problems as you probably know, Due to loss of desire,. I had 7 1/2 weeks of radiation and it had no side effects at all, Some people have fatigue some people have temporary urinary tract problems. I did have a six month Lupron shot shortly before radiation, I didn’t realize it had side effects back then and didn’t notice any.

I’m not sure you’ve heard about bimix or Trimix, You inject it into the penis in order to get a good erection. I know that in my case I still had some desire, even though I was on ADT.

What type of medical centers did you go to, to get those two different sets of Advice? Was one of them a center of excellence? If you did not go to a center of excellence that may be the best option getting a third opinion from experts.

Another thing you could do is get a decipher test, It will tell you how likely it is you will have a reoccurrence. If you get a very low number, then you can probably avoid ADT.

Yes, ADT has a number of side effects. I’ve never had a problem gaining weight even though I’ve been on it for nine years. I weigh myself every morning and base what I eat on what I weigh. I go to the gym three times a week (usually) and walk on the track (Or around the neighborhood) At least a mile twice a day every day. It keeps one healthy, Which is very important for prostate cancer. I also get bone strengthening agents. I was on Fosamax for six years and I’m now I’m getting Zometa infusions every three months. A bone specialist that a recent conference said that everybody on ADC should be on bone strengthers.

Damage to the bladder, colon, and nerves is not normally a big problem for most people with the radiation you’re talking about. Those are problems that can occur more often if you have radiation to the prostate initially. I’m not saying it won’t cause problems, but they are not usually a big deal for the majority of people and the problems are usually for a short time.

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Gleason 4+3, pT3a. No lymph node involvement, no distant spread, but locally advanced because of extension outside the prostate. Margins were negative after surgery.

I have an appointment in the next couple of weeks to talk about Trimix. Right now I’m on 5 mg of Cialis daily just to keep blood flow going down there, but I’m wondering if I should ask about a higher dose before sex to see if that helps with erections.

Rochester Regional is suggesting a conservative route with low-dose radiation and no ADT. Sloan Kettering (NYC) is more aggressive. I’m also waiting to see if I qualify for Proton Therapy from Sloan Kettering, though I’m not sure it makes much difference with prostate cancer.
My surgeon ordered a Decipher test, I just need to get that report from him.

Thanks for your advice, it really has helped ease a lot of my anxiety.

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Profile picture for web265 @web265

Hey @tj1967 ,
I don't have the knowledge some of these other folks have, but I'll give you my experience in a timeline....
09/02/21 Radical Prostatectomy -
10/22/21 PSA Result of < 0.1
01/26/22 PSA Result of 0.039
04/26/22 PSA Result of 0.091

My mind went to "hitting it hard to lower long term risk" so I did two years of ADT and SRT (39 treatments). These treatments were somwhere in the neighborhood of 30 to the prostate bed and glands then the last 9 ish to the prostate bed alone.
Some will say I may have started too early on the second round of treatment, I certainly understand that opinion.
Not everyone thinks the same, you have to do what is right for you! I'm a "Give me all ya got doc!" type.

Treatment ended 8/12/22.
Then it went to ....
08/17/22 PSA Result of 0.014
11/28/22 PSA Result of < 0.006
...and been that way ever since.

I don't think I have any permanent side effects from the salvage therapies, yet anyway. Anything I have came from the RARP. There are certainly side effects to be dealt with during the srt, but in my case they mostly ended within 6 mos of stopping the relugolix. I still have the occaisional hot flash but it's certainly manageable.

....and of course, it could start climbing tomorrow...I've been called a pessimist, I'm a realist!! LOL

Best of luck to you!

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Wow, it looks like you were tracking your PSA right after surgery. My surgeon had me wait until four months post-op before testing. Since then, I’ve been checking every 30 days:
May: 0.11
June: 0.15
July: 0.15
August: 0.14
From everything I’m learning, it seems like taking an aggressive approach early on may give me a better chance of avoiding recurrence down the road. Really glad to hear your PSA dropped!

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Profile picture for heavyphil @heavyphil

Totally agree with @michaelcharles on this one. Just went thru similar treatment at Sloan. 6 months ADT with 25 radiation treatments, including pelvic nodes.
Your cancer is still there, nobody knows EXACTLY where it is no matter what test or scan you have.
I understand your fears about setting back your progress after surgery but please remember that you are dealing with cancer and it is a nasty adversary.
And an excellent radiation team - and your complete cooperation with treatment preparation - can mitigate/minimize many of the side effects you are concerned with. Best,
Phil

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Hi Phil,
I’m starting to think the same way. Being aggressive feels like the only way to fight cancer. I’m hoping to be approved at Sloan Kettering. I’m curious, how was your experience with them? So far I’ve been thoroughly impressed with their follow-up and customer service. I already received the (ADT) relugolix 120 mg prescription in the mail, but I’m not starting it until the doctor reviews my PET scan and MRI. They just wanted me to be ready to begin after our next consultation. They’ve been fantastic so far, so I’m assuming the radiation treatments will be handled with the same level of care. Tim

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Yes, MRI and PET Scan coming up in 3 weeks. Thank you!

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Profile picture for denkea @denkea

First off. This is only my opinion. I've been, somewhat, in your shoes when my PSA was staying in the low numbers area. When it stayed the same or close to the same for an extended period all was good for a wait and see. That wait and see turned in doubling and then it was time to determine a course of action.
Hope this helps.

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Yes, that’s exactly where I’m at. It feels like only a matter of time before the PSA starts climbing. I don’t want to wait until it doubles, which would put me at 0.30. I’m definitely planning to move forward with treatment now rather than later.

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Profile picture for tj1967 @tj1967

Hi Phil,
I’m starting to think the same way. Being aggressive feels like the only way to fight cancer. I’m hoping to be approved at Sloan Kettering. I’m curious, how was your experience with them? So far I’ve been thoroughly impressed with their follow-up and customer service. I already received the (ADT) relugolix 120 mg prescription in the mail, but I’m not starting it until the doctor reviews my PET scan and MRI. They just wanted me to be ready to begin after our next consultation. They’ve been fantastic so far, so I’m assuming the radiation treatments will be handled with the same level of care. Tim

Jump to this post

Hey Tim, I think you’re on the right track with Sloan - they’ve got decades of experience with this.
I had my treatment in Commack and had no complaints; the techs were awesome, caring and knowledgeable. I was totally impressed with their daily enthusiasm and supportive attitude. Maybe I just got lucky?
Not sure about proton therapy for salvage radiation. I know it’s used but still can’t see the point of it, when the whole idea is to literally carpet bomb the gland and nodes. But I am not a physicist so don’t go by me.
But they built it and now they have to pay for it so there’s always that.
Do a little homework (NIH, PCF, etc) to see how the two modalities compare.
I will, however, urge you to take the Orgovyx. A 6 month course ‘won’t kill ya’ as my referring urologist said and he was right. Most SE’s were mild and temporary; but its effects on your T (PCa food!) is dramatic.
The synergy of the radiation +ADT is powerful indeed. Neither alone is quite good enough but together they pack a terrific punch. Ask yourself this: How many more times do I want to wrestle with this thing? Twice was more than enough for me!!🤞🤞
Phil

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Profile picture for tj1967 @tj1967

Gleason 4+3, pT3a. No lymph node involvement, no distant spread, but locally advanced because of extension outside the prostate. Margins were negative after surgery.

I have an appointment in the next couple of weeks to talk about Trimix. Right now I’m on 5 mg of Cialis daily just to keep blood flow going down there, but I’m wondering if I should ask about a higher dose before sex to see if that helps with erections.

Rochester Regional is suggesting a conservative route with low-dose radiation and no ADT. Sloan Kettering (NYC) is more aggressive. I’m also waiting to see if I qualify for Proton Therapy from Sloan Kettering, though I’m not sure it makes much difference with prostate cancer.
My surgeon ordered a Decipher test, I just need to get that report from him.

Thanks for your advice, it really has helped ease a lot of my anxiety.

Jump to this post

You could ask about having Viagra, 100 mg works quite well But if you’re still having problems With erections then Trimix may be your only choice. I know that for me, Viagra didn’t work at all. Cialis is supposed to work to keep your blood flowing the right way And last a lot longer than Viagra.

Low-dose radiation is not a big deal, Probably at least 20 sessions and that can eliminate the cancer. Not having ADT after having a T3a There’s something you should discuss with Sloan-Kettering. It sounds like that is a little under treatment, But I am not a doctor. You only need six months of ADT, With a Gleason seven. This is something a doctor would have more Information about with your biopsy report and the details about minimal Spread outside the prostate (T3a).

Proton therapy will probably be the standard and another five years. It used to require a whole building now it just requires one or two rooms. That will bring the cost down greatly. It would always be better to have proton therapy because it has less chance of damaging other organs, something that is not very likely but more possible with photon..

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Profile picture for jeff Marchi @jeffmarc

You could ask about having Viagra, 100 mg works quite well But if you’re still having problems With erections then Trimix may be your only choice. I know that for me, Viagra didn’t work at all. Cialis is supposed to work to keep your blood flowing the right way And last a lot longer than Viagra.

Low-dose radiation is not a big deal, Probably at least 20 sessions and that can eliminate the cancer. Not having ADT after having a T3a There’s something you should discuss with Sloan-Kettering. It sounds like that is a little under treatment, But I am not a doctor. You only need six months of ADT, With a Gleason seven. This is something a doctor would have more Information about with your biopsy report and the details about minimal Spread outside the prostate (T3a).

Proton therapy will probably be the standard and another five years. It used to require a whole building now it just requires one or two rooms. That will bring the cost down greatly. It would always be better to have proton therapy because it has less chance of damaging other organs, something that is not very likely but more possible with photon..

Jump to this post

Thanks, Jeff. I’m sure I speak for many on this forum when I say your advice has helped me stay focused and reminded me that there is a light at the end of the tunnel, although at times it feels like a very long tunnel. I’m so glad I found this forum, because even though our families care deeply, it is hard to explain the inner turmoil we go through. It really helps to know we are not alone in this. I’m sure you will hear more from me once treatment starts. Thanks again!

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