Dr said Good news Bad news
Very quick history,
2009 October PSA 9 two biopsy's no cancer.
2009 December PSA 20. Biopsy Gleason 6
2010 January robotic surgery, upgrade to Gleason 4x4. Dr said cured, no further treatment needed??? PSA < .04 until 2021
2022 October PSA going up, 33 radiation treatments to prostate bed.
2024 June PSA .37 PSMA CT scan showed two hot lymph nodes above the bladder.
2024 July 5 radiation treatments to lymph nodes. three month PSA .24 Doubling time about 5 months.
2024 new Dr wanted PSA to be in 2.0 range for best scan results.
2026 January PSA 2.26, scan shows no sign of cancer?
Good news, no cancer in suspected in the very hard to treat area, bad news scan shows no cancer anywhere. Dr thinking cancer is in several locations and too small to show up on a scan. Would have preferred a couple larger spots to hit with radiation.
Dr had several suggestions, main one starting ADT. Had Lupron in the past and was not a happy time.
Any thoughts, suggestions or personal experience's?
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I had Oorgovyx/zytiga/prednisone testosterone and psa reduction wiped out 2.4 post surgery in 30 days to undetectable. Different people on this site had variations of good-bad side effects. I had increasing fatigue through 20 months when I bailed out of a 24 month regimen to take an adt holiday per md Anderson protocol. Now after 11 increasingly good months psa is .04 up from .01 undectable . One persons experience. Others on here will give better technical reasoning soon .
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8 ReactionsUnfortunately, it is not unusual for PSMA PET scan results to not detect tumors when the metastasis has not yet resulted in tumors large enough to be detected.
You can also consider getting a second opinion on the PSMA PET scan results, as this results interpretation is a unique skill.
Can you provide additional information on when you previously had ADT treatment and for how long? Any medication in addition to Lupron at the time? PSA results while on ADT?
It will be helpful if you can provide information on any previous germline (hereditary)) and/or somatic (tumor) testing results. If not previously done, I recommend considering. Others will provide you details on how to get germline testing done free.
ADT treatments have recently advanced both in terms of effectiveness and management of side effects. I expect that others will provide you current ADT recommended treatment details for Gleason 8 with BCR.
Everyone is different, but there are more options available now for managing PCa with a better quality of life.
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7 Reactions@billfarm said, "/prednisone".
That's a new one on me!
And you were able to halt the prednisone when the time came?
Prostate Cancer Foundation pcf.org has 2 Patient Guides, one for initial dx and a 2d for more advanced cases. Free by download or hard copy.
Hope it is helpful
Best wishes.
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4 ReactionsI also had my prostate cancer surgery in 2010. It came back again in 2014 and I had to have salvage radiation. Since then, it’s come back three more times. Three years ago, I had to have a metastasis zapped on my spine. I’ve now been undetectable for 26 months, but I have BRCA2 so it will almost definitely come back.
I’ve been on ADT for eight years. I am also on. Nubeqa Which has very few side effects, None of which I have noticed. It also doesn’t pass the blood brain barrier so it doesn’t cause brain fog like the other two lutamides.
The question is how much is Long life worth to you versus a little bit reduction in comfort, in order to live a lot longer. I know that for me, ADT is well worth it. I had serious hot flashes from Lupron in the beginning. I have found multiple ways to reduce them. I also switched to Orgovyx Three years ago and my side effects have been lessened. I do run on a track twice a day 1 mile. I go to the gym three days a week to work on my arm and leg muscles. I also do about 70 situps every time I go since stomach muscles really deteriorate with ADT. To tell you the truth, I lead a pretty normal life and you would have no idea I had prostate cancer or am on ADT at 78.
It is possible you could take just Nubeqa, I did it for eight months and stayed undetectable the whole time. The problem is my testosterone kept rising, so I had to go back on it. I know a number of people who are just on Nubeqa And it works quite well for them since it’s suppresses testosterone. That means you can have testosterone and the drug will prevent it from allowing the cancer to grow.
The thing is, the best option is usually to take both drugs. If you stay on ADT alone more than a couple years, you can become castrate resistant, Took me 2 1/2 years on ADT alone to become Castrate resistant. That’s supposed to make the cancer hearted a treat, but I’ve been that way for six years and The drugs that are available now work quite well anyway. Talk to your doctor about adding an ARPI if you must be on ADT for long. Considering the fact that your cancer keeps coming back, that may be your best option.
Have you had genetic testing? Because your cancer keeps coming back, you should get hereditary, genetic testing. It’s paid for by insurance and there are drugs you can take if you have certain genetic issues..
It’s not surprising that the PSMA test doesn’t show anything. It can’t see tumors that are smaller than 2 1/2 mm and even 5 mm is hard to see says a doctor at UCSF. Waiting until your PSA hits two is really pretty extreme. You could get it at 1 or 1.5 that could be just As useful.
You might want to get a second opinion from a center of excellence. They could give you some different ideas about what treatments you should be taking.
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5 Reactions@carbcounter arbiterone acetate (zytiga) blocks testosterone produced by adrenal glands located on kidneys. Prednisone replaces other cortico steroids made there . You need to taper the prednisone to give your adrenal glands the signal to produce steroids again. I went from 1 tablet per day to 1 tablet every other day for ten days . Others needed longer to taper the prednisone to stop the adt.
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3 Reactions@jsh327 Can you provide some specific examples of these "options" which have helped with side effects? I will probably be heading down this path soon and quite concerned about how side effects could impact my day to day life. Thank you,
With PSMA PET showing nothing - even though recurrence is suspected due to rising PSA - have you asked about using an older PET scan (called Axumin)?
Axumin doesn’t rely on PSMA so, it might show something. (Usually PSMA PET is better than the older PET scans; but, lacking enough PSMA expression, there’s no telling……
Ask your doctor about that alternative (older) F18-Fluciclovine (trade name: Axumin®) PET/CT scan option to try to find the recurrence to hit with radiation.
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2 Reactions@tango32652 My inputs would be the same or similar to those provided earlier by @jeffmarc. As mentioned by @jeffmarc, you can discuss with a medical oncologist (PCa specialist) a combination of recent-generation ADT+ARPI medications. The medical oncologist will work with you on the best combination and amount for your specific body. Also, as mentioned by others, a part of the side-effect mitigation now is physical activities which have been shown in studies to be effective. Lastly, depending upon specific side effects, many in this forum can recommend specific techniques that have been effective for them. It often takes persistence with your medical oncologist to find the right combination for you.
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2 Reactions@jsh327 Thank you. I didn't see that posting by Jeff. It's VERY informative.