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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

No surprise on insurance issues right? With all the grayness in the prostate cancer world and opinions of doctors in different disciplines, it’s hard to see a clear path. Wishing you the best of luck as well.

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Buy and read surviving prostate cancer by dr Patrick Walsh

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@batsam10

I have been watching the pcri videos which are great. I like Dr Schultz and wished he was in my area. I have reached out to their help line. I’ve asked about a scan and all of the urologists I have seen say they don’t do scans for Gleeson 7 which I’m not happy about. It would help on making a decision. It could be an insurance issue that they are aware of. Thank you for posting and sharing your information.

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batsam, do you have an oncologist. Gleason 7s get the PSMA/PETs all the time. With probable ECE, it's crucial for treatment decision. If your urologists knows about an insurance issue, they should tell you that there is an insurance issue.

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Does sound confusing! At 61 if in otherwise good health you need to deal with it. I’d recommend before any treatment begins a consult with Dr. Eugene Kwon at Mayo Clinic Rogester, MN. He & his team have 8,000 metastatic prostate cancer patients under their care. Take a look at his YouTube videos. Plus at Mayo all the specialist talk about you in your presence as to treatment options. Good luck.

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@gently

batsam, do you have an oncologist. Gleason 7s get the PSMA/PETs all the time. With probable ECE, it's crucial for treatment decision. If your urologists knows about an insurance issue, they should tell you that there is an insurance issue.

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I’ve asked three urologist and a radiation oncologist about getting the decipher test and or scans. They say not needed or necessary for whatever reason. I have discussed this with a radiation oncologist and 3 urologists all at different hospitals. One of the urologists was with one of the top cancer centers in the country.

They all say not needed or necessary at this point. I have been perplexed on deciding but after all the research and the great input by all of the great men in this forum, I have decided to go with the surgery for myself. I feel relieved that I have made a choice and going with one of the most top rated surgeons from my area.

I realize I will be in a long recovery and hopefully Mr. happy down below will recover enough to resume making love to my beautiful wife down the road. I went with the best shot at getting the cancer out of my body and feel pretty good about the choice.

Thanks to all for the support and encouragement.

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@batsam10

I’ve asked three urologist and a radiation oncologist about getting the decipher test and or scans. They say not needed or necessary for whatever reason. I have discussed this with a radiation oncologist and 3 urologists all at different hospitals. One of the urologists was with one of the top cancer centers in the country.

They all say not needed or necessary at this point. I have been perplexed on deciding but after all the research and the great input by all of the great men in this forum, I have decided to go with the surgery for myself. I feel relieved that I have made a choice and going with one of the most top rated surgeons from my area.

I realize I will be in a long recovery and hopefully Mr. happy down below will recover enough to resume making love to my beautiful wife down the road. I went with the best shot at getting the cancer out of my body and feel pretty good about the choice.

Thanks to all for the support and encouragement.

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batsam, who is this best of surgeons.
It is a relief to finally decide. Bless your choice with all the luck in the world.

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In my opinion, you are doing the right thing. The goal is a long life free of pain. Good luck

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@gently

batsam, who is this best of surgeons.
It is a relief to finally decide. Bless your choice with all the luck in the world.

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This Surgical Urologist is out of Mass General/Brigham & Woman’s Hospital. His name is Dr Dahl who has performed an estimated 5000 surgery’s. We carefully reviewed top surgeons and luckily a friend of mine at work has two friends who have had their surgery’s performed by him. They are doing very well and happy with their choice. He is also a consultant for the robotics companies used for surgery’s. He has been named as a top Doctor in Boston for many years. My wife and I are happy with the decision. Thank you for the blessing and luck.

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@batsam10

I’ve asked three urologist and a radiation oncologist about getting the decipher test and or scans. They say not needed or necessary for whatever reason. I have discussed this with a radiation oncologist and 3 urologists all at different hospitals. One of the urologists was with one of the top cancer centers in the country.

They all say not needed or necessary at this point. I have been perplexed on deciding but after all the research and the great input by all of the great men in this forum, I have decided to go with the surgery for myself. I feel relieved that I have made a choice and going with one of the most top rated surgeons from my area.

I realize I will be in a long recovery and hopefully Mr. happy down below will recover enough to resume making love to my beautiful wife down the road. I went with the best shot at getting the cancer out of my body and feel pretty good about the choice.

Thanks to all for the support and encouragement.

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batsam10 - Given your age, life goals, and positive outlook I believe you have made an awesome decision to go with surgery at a center of excellence. Sounds like you have also done great doing your research on surgeons at the center of excellence!!

Best of luck with your surgery and praying all goes well.

Jim

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@heavyphil

did you mean 2.0 or .20? The latter is where they recommend PSMA scan. If it's 2.0 that's not very good in terms of catching it early enough, right?

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@heavyphil, PSA levels are normal up to 4.0. A 2.0 is still very low. Mine was 3.75 when I had MRI/Fusion Biopsies only because my PSA was continuing to rise every test.

So if @ecurb has a 2.0 that would be a very low PSA number to get a PSMA. The .20 would rule out the need. Now I say that as I did not read the original post. Did @ecurb have a RP? If had a RP the PSA should be at undetectable level and I think that is when it reaches .20 which is where I am told the no longer give a reading below that. So if had RP then the 2.0 would be something to address with futher testing and consider a PSMA and bone scan.

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