Received the news on Halloween. I have prostate cancer. Need advice.

Posted by frank1956 @frank1956, Nov 1 7:26pm

I previously had 2 benign biopsies in 2024. Urologist/Oncologist asked to follow up in a year. So on September 2025, I did PSA (5.4) and MRI (2 legions PI-RADS3, and PI-RADS4). These 2 legions are similar in size with the previous 2 MRI's from 2024.
Doctor ordered a biopsy. On Halloween day, the report came and it shows out of 18 cores, there are 2 Gleason 6, and 1 Gleason 7 (3+4), which is with 40% core, and G4 is 10%.
I am scheduled to see my Urologist/Oncologist on Wednesday. I will ask for a Decipher or Polaris test and a PSMA scan. Maybe a genetic test to check BRCA1, BRCA2 genes?
I am not sure what else to ask from the doctor. Any advice will be greatly appreciated.

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Profile picture for jcf58 @jcf58

Frank: Given you are a UCLA patient, I would inquire about Tulsa Pro if they suggest treatment. I know they do it there. It is minimally invasive and risk of side effects are low.

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@jcf58
Yes. The doctor who did my biopsy twice is part of their Tulsa Pro team. Next week, when I meet with him, I will certainly ask for the qualifications of being a candidate for that procedure. The challenge that I see is, I have 3 cores with cancer, and they are in 3 different locations. Partial ablation might not be possible. I may need total ablation if I chose Tulsa Pro.

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Profile picture for kjacko @kjacko

A little heads up. When I was diagnosed with two cores of cancer, one at 3+4, I decided on removal. I wanted the cancer gone. My pathology report came back that the core was actually 4+5. Just make sure your biopsy scores are accurate! Best wishes👍🙏

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@kjacko
I now can see how biopsy can be a game of chance, instead of total accuracy. I have 2 lesions that did not grow for a year. Their sizes are 1.2cm and 1.4 cm. Last year the same UCLA doctor did the targeted biopsy, with 3 cores of each and came back all benign.

A year later, one shows a Gleason 6, and one shows Gleason 7 (3+4). The needle is small. It may only hit the area with cancer but left other areas untouched that might be worse. Only surgery removal can check the whole lesion.

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Frank: Given you are a UCLA patient, I would inquire about Tulsa Pro if they suggest treatment. I know they do it there. It is minimally invasive and risk of side effects are low.

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Profile picture for brianjarvis @brianjarvis

It’s good that you’re in information-collecting mode. That will guide you towards an appropriate decision.

> It’s always a good idea to get 2nd opinions on biopsies — not necessarily because you don’t trust the 1st one or don’t like that opinion. But, because much of the interpretation of images and scans is often as much an art as it is a science, and it’s dependent on the skill and experience of the person reading the slides. It’s good to have an independent set of eyes reviewing the biopsy.

> Since you have a “4” cell type in the Gleason score—> In the MRI or biopsy reports, were the words cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma mentioned? (If not, that’s good.)

> also, ask them to calculate your: % Free PSA, PSA Doubling Time, and PSA Density to see if those are ok or if they indicate any concern.

> the genetic (germline) test will check a few dozen markers that may be related to prostate cancer in addition to BRCA1/BRCA2. (See attached chart for the key markers.)

> I would also ask to bump-up PSA testing to every 4-6 months rather than annually (and calculate those three - % Free PSA, PSA Doubling Time, and PSA Density - at every PSA test). Tracking PSA more actively going forward is important.

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@brianjarvis
Regarding 2nd opinion of biopsies. Since UCLA facility is one of the center of excellence, I am not sure if other facilities will disagree with their findings? But I will certainly ask the doctor who did the biopsy on me, next week.

As to the words cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma ---> On their pathology report, total 18 cores were extracted. There is a table for each core. There are 3 columns: Crib4, IDC, PNI. I looked it up, they refer to Cribriform, Intraductal Carcinoma, and Perineural Invasion. None are checked.

For PSA numbers. It is 5.4 and Prostate size is 59cc, so density is 0.09. No free PSA number this time. For PSA doubling time, I asked chat gpt. Since last PSA was 4.5. So, doubling time is 3.5 years?

Than you for your thoughts

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3+4 is not life threatening. Basically, just keep an eye on your PSA. Any significant increase in that number beyond 6 and you will initially be put on hormone treatment to stop your testicles producing testosterone which cancer needs to feed on.

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Profile picture for jeff Marchi @jeffmarc

You are a case where active surveillance would make sense. This was discussed At the PCRI conference today. With a low number of cores you have with a Gleason 6 score, and very little four in the 3+4 There really isn’t a lot of reason to do anything right away. You’re a low PSA score is another reason active surveillance makes sense. Prostate cancer grows very slowly you have a long time to make any decision.

You could get a PSMA pet scan to see if there is spread anywhere in your body.

The Radiation oncologist at the PCRI conference discussing active surveillance was pretty insistent that somebody like you should not be doing treatment yet. You could take a look at the video and see what’s going on.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.

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@jeffmarc
Thank you, Jeff. I am a UCLA patient. I believe they do have an Active Surveillance program. I will discuss with my doctors next week to see if I am qualified.

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I would agree with others about getting a second opinion which you can do as a telehealth from a center of excellence.

I watched the added video, but it doesn’t seem to discuss much about the accuracy of the PSA or PSA trending and intensity over a given period of time. That may be worth a discussion with your doctor.

I had a PSA of 10.2 and a history of my brother having cancer. Out of the five Radiation oncologists I spoke with, only one suggested active surveillance as a choice. One of my issues, was that everybody is different so when you check the PSA over whatever the given period of time, I did not want to get into a situation where all of a sudden I was forced into taking drugs with heavy duty side effects, potentially, curable or not curable. That issue was not discussed in the video and one that was important to me as quality of life was a focus in my personal research.

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In same boat waiting to set up surgery .

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A little heads up. When I was diagnosed with two cores of cancer, one at 3+4, I decided on removal. I wanted the cancer gone. My pathology report came back that the core was actually 4+5. Just make sure your biopsy scores are accurate! Best wishes👍🙏

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@frank1956
Your doctors are the ones to recommend treatments for you. They have your medical and mental health history. Your age 70 indicates many more years of life expectancy.

I had almost the same Gleason scores. The Mayo R/O recommended 20 rounds of photon SBRT radiation with hormone treatment. He then ordered Decipher and bone scan. Bone scan was negative and the Decipher indiacated low risk versus intemediat risk that biopsies indicated. Then Mayo R/O removed the recommendation for hormone treatment just radiation only.

I then went to UFHPTI for second opinion. The R/O there agreed with my diagnosis from Mayo (medical records transferred there) but wanted another test done PSMA. That too came back negative. UFHPTI recommended 30 rounds of radiation proton beam.

I did not get a recommendation from either R/O or my Mayo PCP for active surveillance not did I want to do it. I wanted to address the cancer the earliest I could based on success rates when PC is caught early.

What others did with their treatments was based on their experience and their PC including doctors having their full medical history to make recommendations. We do not have that history nor are we PC medical experts just sharing our experience and what we did with our PC diagnosis, test, treatment, and recovery.

Consider a second opinion when you get all test results (Decipher, PSMA, etc.). Good luck.

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