What to do? In limbo after radiation + Lupron, now rising PSA

Posted by bluegill @bluegill, Jan 15 7:18am

(discovered cancer 3 years ago: PSA of 28, Gleason 9, then 6 weeks radiation, 3 years Lupron, I'm 63)

My PSA got down to 0.05 after last Lurpon (April '23), but last 3 readings are up (now 0.2). Urologist said that I might have to go on Lupron for the rest of my life.

How high does PSA have to get before I can qualify for one of those fancy tests (i.e PSMA)? What else can I do?

(I'm lifting weights, eating right, and drinking only NA beer now and then)

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I'm sorry to hear about the rising PSA. Have you talked to your oncology team about adding an antiandrogen like Apalutamide (Erleada) or Enzalutamide (Xtandi) into the lineup? There's been research showing excellent outcomes combining antiandrogens with androgen-deprivation therapy like Leuprorelin (Lupron) or Degarelix (Firmagon), both for castrate-sensitive and castrate-resistant metastatic prostate cancer.

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Q- How high does PSA have to get before I can qualify for one of those fancy tests (i.e PSMA)?

I am not an expert, but for me and my insurance the path was bone scan, then MRI scan, then CT scan, then PSMA PET scan. We did these tests to "find" where the cancer was, as for my case I had surgery 12 years ago, so we were looking for where it had spread. | In your case, I would inquire as to what is leading to the desire for imaging? It sounds like you have an aggressive cancer that is confined to the prostate, or has your health team indicated that it has likely spread?

Q - What else can I do?

The response above is spot-on in terms of a possible additional treatment option. Definitely explore the mix of couplet therapies for castrate sensitive and castrate resistant treatment methods. Have you been tested for genetics such as BRCA1 or BRCA2? If you have a classified gene or a potential gene, then a PARP inhibitor could be added to the treatment package. At some point considering options for chemotherapy such as docetaxel and I'm currently reading up on antibody drug conjugates (ADC) that are like a targeted cytotoxin. There are also nuclear medicine paths like Pluvicto.

Keep asking questions, and advocating for your health. That you are physically active and eating well are outstanding accomplishments and I commend that discipline. Keep the faith.

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I’m suspecting that with a PSA of 28 you still have your prostrate? Have you had a PETSCAN? Has the cancer landed anywhere yet? Are you still on LUPRON? So many unanswered questions. I’m in the same boat, just finished 39 radiation treatments and LUPRON shot. Now I have decided to wait out this cancer to see if they got the cancer through the radiation or what? Good luck,

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Summary: Radiation as primary treatment for prostate cancer (PCa) w ADT 2yrs. Low point (nadir) PSA .05
3 successive increases over 9 mos to .2
Suggests BCR (biochemical recurrence).
See:
PCF.ORG- new patient guide for recurrent PCa and Jan 2023 video on rising PSA following treatment
Observation; a medical and/or radiation consult to consider investigative and/or treatment options.
Medical Oncology should be directing or consulting with your Urologist regarding ADT and additional therapies
PSMA PET scan is 20 - 30 % accurate at. 2
Oncologist may want to PSMA scan now or start with bone and/or other scans and wait for PSA to rise.
Complex situation; best wishes.

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Thank you for the replies. I'm taking notes.

Before the radiation (I think it was 28 IMRT sessions over 6 weeks) I had NM Bone Imaging whole body and BD Bone Density Axial Skeleton, with "no evidence of metastatic disease"

In two days I get another PSA test, and I'm very nervous about the results. I know I should focus on the present, and right now my numbers are still low, but I can't help but worry about the continued rise.

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PSA still rising... in less than a year and a half it's gone from .06 to .074 to .138 to .169 to .208...

If only my retirement portfolio showed such consistent growth.

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@bluegill

PSA still rising... in less than a year and a half it's gone from .06 to .074 to .138 to .169 to .208...

If only my retirement portfolio showed such consistent growth.

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Laughter is a key part of the journey, so I chuckle at the retirement portfolio reference! Your PSA levels are very low, as a layman. To the questions asked above, do you still have a prostate?

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I still have a prostate, albeit a very pissed off one due to the massive radiation incurred.

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@bluegill

I still have a prostate, albeit a very pissed off one due to the massive radiation incurred.

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My husband went on Zytiga, an anti androgen, when his PSA rose after lots of radiation and Lupron. The Zytiga plus Lupron kept the PSA undetectable for over three years. You should ask your oncologist and/or urologist about adding Zytiga, Xtandi, or another similar drug. Good luck.

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Thanks, I'm still taking notes on all these comments. I see my urologist in a couple of weeks.

My PSA apparently was kept low by the Lupron, so my urologist was happy about that. But, it's a gamble: should I go on Lupron again now to keep it low (until it becomes Lupron-resistant) or wait a while, so I don't use up any Lupron effect too early.

My goal is to live for 17 more (productive, of course) years.

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