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

I had a 4 cm lesion on my prostate, with cancer also in my seminal vesicals, membranous urethra, and hilar lymph node (chest). They determined I was not a good surgery candidate. They started ADT, followed by chemotherapy as soon as they could get it coordinated (and had 6 courses 3 weeks apart). It took 60 days to get scanned, planning consults and scheduled before radion began. Twenty daily treatments to my pelvic region and 15 (concurrently) to my chest. These were separate treatments but done same day right after the pelvic treatments before I left the treatment room.

Mayo’s approach was to hit everything hard while the cancer is weakened by the other treatments. The mop up with the radiation to kill whatever is remaining.

They said they thought I would fully respond to this therapy even thou I was Gleason 9-10. A back up plan was to use second generation ADT and Lutecium (a new treatment, if needed).

An aquaintance went through the same treatments, started with stage 4 and PSA of 4300, many metastases, including to bones and some organs. He is doing the Lutecium now and is nearly clear.

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

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

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.)

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.)

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

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

Thanks for that info on Mayo. They said that they only take Medicare and not with an advantage plan. I have Aetna as my secondary. Will ck with them again.