Has anyone had PC that is very aggressive and a very low low PSA?

Posted by sam60 @sam60, Jul 13, 2023

My cancer is now chemical reoccurring after five years of ADH and Zytiga. My PSA rose to .5 and we did a PSMA scan, which came back with only a tiny uptake in one rib, and my scapula too small to even radiate my oncologist thinks that my cancer is of a type that is very aggressive. I have Glisan nine but very low PSA I’ve never had a PSA over five. has anyone had a cancer like this or know of anyone?

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@gila

Went through my lengthy list of acronyms but can’t find DH. Please tell me what this stands for?
Thank you

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Sorry about that should’ve been ADH 🙏. Androgen depression therapy.

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@kam23

I have PC with a Gleeson score of 9-10/10. My PSA was checked with bloodwork at annual physicals. In 14 months I went from normal to stage 4. December PSA about 3. By the time my local university medical system did scans and biopsies (over 4 months), it was 17.

I switched to Mayo. 14 months so far of ADT, 6 rounds of Docetaxel chemo, and 20 days of radiation. My 6 month post radiation scan was clean. No recurrent disease at this time.

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Which mayo clinic did you go to if you don't mind me asking . I'm Jeff. My original Gleason score was 3+4 PSA WAS JUST OVER 5..had the robotic procedure Ion August of 2015. Everything seemed well and was declared cancer free after 5 years (202). Thing were going well till July of 2022 and the psa clicked up to point 1. Waited 3 months and it went to .18 just checked last week and it's now at 34..rocky mountain cancer centers wants me on the orv pill, one
urology oncologist wants to keep waiting. Third radiation oncologist wants to do radiation salvage but no drugs. Is it worth my time to go to the matin clinic. I just turned 60

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61'year old, I had RP 2019 , undetectable PSA 0.02 until April 2020 a slow rising PSA , currently 0.27 . Had a pet/psma August 2022 , showed uptake in one pelvic lymph node (SUV max 1.5) and a solitary low uptake in one rib (SUV max 1.5) the rib in the radiographic image showed sclerotic damage and was considered benign.
I repeated the pet psma scan in April 2023 and it showed a slight increase in the lymph node SUV max 2.4 from previous 1.5 but the rib lesion showed no signs of further activity. In general different doctors interpret the readings of pet/psma scans, when taking the scans to another hospital they said probably had cancer metastasis in the ribs and wanted to radiate it. The original medical team said this was nonsense,with a PSA so low it would not be bone metastases and single rib lesions are common.
Below is a link and if yo scroll down to the section on molecular based imaging you will see the section on rib lesions.
I hope this is of help to you.
Good luck

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I was diagnosed with locally advanced aggressive prostate cancer with a PSA of 2.4 and Gleason score of 8.

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@sam60

One more thought. I am having by biopsy tissue from five years ago being analyzed for mutations I believe it’s called genomic testing. It would be better if I had a more current tissue sample but I don’t and I’m glad I don’t have a tumor that they can take it from might consider doing this now, not sure it was available five years ago .

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I don’t believe it matters if the Genomic test is current. It stays the same. I just had the test and was told you don’t repeat it.

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@sam60

Sorry about that should’ve been ADH 🙏. Androgen depression therapy.

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Ok, thank you:)

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@pueblokid1

Which mayo clinic did you go to if you don't mind me asking . I'm Jeff. My original Gleason score was 3+4 PSA WAS JUST OVER 5..had the robotic procedure Ion August of 2015. Everything seemed well and was declared cancer free after 5 years (202). Thing were going well till July of 2022 and the psa clicked up to point 1. Waited 3 months and it went to .18 just checked last week and it's now at 34..rocky mountain cancer centers wants me on the orv pill, one
urology oncologist wants to keep waiting. Third radiation oncologist wants to do radiation salvage but no drugs. Is it worth my time to go to the matin clinic. I just turned 60

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I went to Mayo Rochester. Treated by Dr. Kwon. My Big 10 University medical system wanted me to do radiation right away due to metastasis to a lymph node in my chest. They also said the hope of getting rid of my disease was “very low”.

My wife found several videos by Dr. Kwon on YouTube and the Prostate Cancer Research Institute. I highly recommend these.

I asked the university oncologist if he would do the treatment recommended by Mayo. He said “No, it’s not effective.” We moved my care to Mayo. We also used Minnesota Oncology for the Chemo treatments and Mayo for the radiation. I drove to MN 13 times last year and it was worth it. I am clear at 6 months post radiation. I only wish we had gone to see Dr. Kwon first. (I had Gleason 9-10.)

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@kam23

I went to Mayo Rochester. Treated by Dr. Kwon. My Big 10 University medical system wanted me to do radiation right away due to metastasis to a lymph node in my chest. They also said the hope of getting rid of my disease was “very low”.

My wife found several videos by Dr. Kwon on YouTube and the Prostate Cancer Research Institute. I highly recommend these.

I asked the university oncologist if he would do the treatment recommended by Mayo. He said “No, it’s not effective.” We moved my care to Mayo. We also used Minnesota Oncology for the Chemo treatments and Mayo for the radiation. I drove to MN 13 times last year and it was worth it. I am clear at 6 months post radiation. I only wish we had gone to see Dr. Kwon first. (I had Gleason 9-10.)

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Saw Dr. Hugec at MN Oncology. He was awesome as well. Very good to team with Mayo and MNO.

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@sam60

I’m on Medicare, and Mayo won’t accept my insurance. I would be interested. If you could ask your oncologist what he thinks about aggressive prostate cancer with very low PSA.
Thanks

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Hi Sam,
I’m wondering if there was a miscommunication with Mayo about them accepting you as a patient with Medicare as your only insurance.
Not necessarily the same, but I had a 2019 biopsy at Mayo and Jan/Feb 2020 PBT (Proton Beam Treatment) at Mayo. My primary coverage was Medicare and my secondary a policy from my wife’s retirement (good coverage). That said, our secondary starts at 80% of the 20% that Medicare doesn’t cover. I had tiny bills related to my treatment.
Don’t know if it might be the type of treatment would make a difference. Not long ago many insurers were not covering PSMA/PET scans and its my casual impression that now most insurers cover the PSMA/PET scans.
I wouldn’t stop with the first “No”.
Good Luck

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@kam23

I have PC with a Gleeson score of 9-10/10. My PSA was checked with bloodwork at annual physicals. In 14 months I went from normal to stage 4. December PSA about 3. By the time my local university medical system did scans and biopsies (over 4 months), it was 17.

I switched to Mayo. 14 months so far of ADT, 6 rounds of Docetaxel chemo, and 20 days of radiation. My 6 month post radiation scan was clean. No recurrent disease at this time.

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Where was the metastasis that you were stage 4 How do you get out of that stage? I thought one could not

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