Conflicted/Confused, any Guidance/Advice out there?

Posted by batsam10 @batsam10, Mar 10 1:03pm

I will be 61 at the end of this month. MRI on August 2022 revealed an area of suspicion measuring 2.2 cm x 1.4 cm within the left transitional zone mid gland base. Impression from Biopsy September 2022 showed 2.2 cm PI-RADS 5 lesion within the left transitional zone mid gland/base with probable extraprotastic extension. 18 cors pulled 3 were cancerous. Gleason score was given 3+3 but my second opinion stated 3+4. Was told low risk and AS is OK.

Second biopsy Jan 2024 for samples revealed 3+3 and 3+4 Gleeson scores. The report came back with 55 mL gland. Redemonstration of PI-RADS 5 lesion in the left anterior transitional zone with probable ECE. My last PSA in Aug. 2023 was 5.7. I was then told I’m no longer low risk but low intermediate unfavorable. I don’t believe there was any big differences that I can understand for the status change. I was scheduled for external beam radiation this week but chickened out after reading the side effects, especially with a bad baseline for bowel symptoms.

If anyone can make some sense of all of this and provide opinions, I would greatly appreciate it. I am trying to make a decision on what treatment to go with. I’m in the Boston area and we have great Hospitals and Doctors but that doesn’t make the decision any easier.

Thanks and best of luck to everyone.

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bens1 | @bens1 | Mar 31 10:23am

I had a 10.2 psa with no metastasis and my brother had 6.5 but his had spread. I had a 3+4 gleason with a low Decipher score. My final radiation oncologist told me I was cured after my treatment and that if I see a 2 point rise in my PSA test, that we will do a psma pet scan. While I respect all 5 radiation oncologists I saw, I consider cure to be ...never again and since they all make educated guesses, I try and lean on the side of conservative decisions in every prostate cancer and testing that is done and don't assume that doctors are infallible. To me the cure language is not explained well within the medical community. Every PSA test for me in the future will remain a focus until other additional somewhat proven testing tells me otherwise.

In terms of radiation. There are different machines that have significantly different features, capabilities and side effects. I had a 2mm narrow margin machine with built in MRI. Other machines have 3-5 mm margins. HUGE difference in potential side effects. Spacers, spaceoar, biogel or BioProtect make a difference before radiation, in protecting your rectum from more exposure. I never assumed my doctor had the only answer for radiation machines or prostate removal. Their intentions are great but reality makes the decision process more complex.

You may want to drill down on machines (Elkta, Meva,Mridian...) and their features, benefits and risks. Talk too your doctors about your research and ask them questions. I have spoken with doctors who are happy to answer the questions and have you participate as well as those who have an ego and don't like the questions. It is your body to decide how you Protect your healthy tissue and treat your cancer.

heavyphil | @heavyphil | Mar 31 2:33pm

If you did NOT have a Decipher test when you had RP (before they were so common) is there any other genetic or blood test to steer you in the right direction as far as hormones, length of time, etc., along with radiation is concerned. Don't want to over treat, but certainly not UNDER treat. I mean, how many chances are ya gonna get??