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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@heavyphil

Hey buddy, the truly unfortunate thing is that NO testing can guarantee that it is defined only to the prostate. Even ONE cell that gets out can set up shop and start the whole thing all over again.
I had an MRI and a PET before my surgery ( had to pay 7K out of pocket for the latter) and both showed no spread. My surgical pathology slides showed no spread and negative margins….yet here I am facing recurrence.
The only thing surgery provides as initial treatment is to be able to have radiation and ADT if it recurs. VERY difficult and ill-advised to have surgery after radiation.
So that greatly impacted my decision and I am glad/sad with my choice. And surgeons and radiologists both have bad days so the human factor is enormous….It’s gut wrenching for sure!!!

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per my medical oncologist....a PET cant see cancer if the PSA is less than 2.0. sorry about that big waste of money guy. I m on ADT now with less than 0.01 PSA..

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Batsam10, why the "unfavorable" label with only 3+4 and PSA< 10? Were the number of positive cores >50% or did I miss something?

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@ecurb

per my medical oncologist....a PET cant see cancer if the PSA is less than 2.0. sorry about that big waste of money guy. I m on ADT now with less than 0.01 PSA..

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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

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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Not qualified to respond to your question. It’s a good one. He did say that cancer cells on the head of a pin, can t be detected by a PET scan. Not sure of the difference between the two scans. Gotta try to find that out.

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Look up SPACE O- it protects the bowel. My bowel is fine with 13 biopsy’s. Gleason scores 9-10. Had nuggets put in my prostate at the same Tim’s for RT shooting accuracy. Hope that helps. Bruce

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@paulcalif

I'm older than you (just turned 69). My diagnosis is very similar to yours. I don't want side effects either yet I want the cancer eliminated. My doctor recommended surgery. I'm not going that route. I've spent many hours on research. My first choice was MRIdian which is radiation guided while looking at real time MRI. Unfortunately, the manufacturer went out of business but there are still some places using MRIdian. But I moved on to the "Tulsa Pro" procedure. No cutting, no radiation. This is cutting edge but not a super long track record. Check it out. There is a great video discussion on YouTube. Pretty much everything says insurance and medicare won't cover it. I did read conflicting views saying that there are temporary Medicare numbers that can be used to cover it and that it will be covered by Medicare the 1st. of Jan 2025. I don't know if any of these opinions are correct. Worst case scenario is I will pay out of pocket. The procedure runs between $30 and $40k depending on where you have it done and your particular case. I have the money in an IRA, but that's about all I have. I'm convinced that the Tulsa Pro procedure is my best choice. You have time, luckily. I'll be having a consultation with UCLA after I have an MRI done next month. Best of luck to you, do your research.

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Thanks for sharing your story, experience, and research. If I’m understanding correctly, you’re choosing to do the ablation therapy. I have looked into that myself and agree that there is not a lot of history, data, or outcomes. I just meet with a Doctor in my area who does the ablation therapy and said I was an OK candidate, not a great one.

He was incredibly honest and said he could only treat one area. He said that there would still be cancer in my prostate and thought it would be wise to stick with surgery or radiation. The sad part I’m hearing within this support group is insurance coverage. It’s bad enough we have do deal with the disease and choices, but get tagged with an enormous bill.

I wish you the very best of luck with whichever treatment you get.

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@midatlpatch

Batsam10, why the "unfavorable" label with only 3+4 and PSA< 10? Were the number of positive cores >50% or did I miss something?

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Apparently my misunderstanding. My wife and I were on a telemedicine call and I thought I heard the Dr. say unfavorable. She thought she heard the same. Just saw a different Dr. Thursday March 14th in person who said he didn’t believe I was unfavorable. He did concur with the other Dr. about getting treatment.

Thanks for pointing this out. If I hadn’t seen this Dr. on Thursday, your question would have prompted me to reach back out to the other Dr. for clarification. I’m still tying to understand all of this.

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@ecurb

Look up SPACE O- it protects the bowel. My bowel is fine with 13 biopsy’s. Gleason scores 9-10. Had nuggets put in my prostate at the same Tim’s for RT shooting accuracy. Hope that helps. Bruce

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Thanks for the tip. I did hear of the gel that helps spare your bowel. After doing some research and communicating with this incredible group of guys, I did ask the Dr. about the gel, the type of radiation, and the equipment used to deliver the radiation. I never heard back from him but did hear from him right away when I cancelled my radiation sessions. I’m not insinuating anything here but it does make me wonder if folks are being pushed into services.

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Over the past 7 years, I’ve had two MRI’s(both negative); and two biopsies(the first negative and the second this past August showed two cores out of 12 with cancer at 3+4=7). I chose RP because was told by two surgeons that if radiation didn’t work, removal is very difficult to perform. Everything went well, including NO incontinence issues at all. (P.S. do your Kegel exercises!). However, and the main point I want to make, is my pathology report indicated my cancer was 4+5=9 and was very close to the capsule. I would suggest getting any additional testing you can to determine the level of cancer and then figure out the treatment options. Best of luck! 🤞🙏

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@kjacko

Over the past 7 years, I’ve had two MRI’s(both negative); and two biopsies(the first negative and the second this past August showed two cores out of 12 with cancer at 3+4=7). I chose RP because was told by two surgeons that if radiation didn’t work, removal is very difficult to perform. Everything went well, including NO incontinence issues at all. (P.S. do your Kegel exercises!). However, and the main point I want to make, is my pathology report indicated my cancer was 4+5=9 and was very close to the capsule. I would suggest getting any additional testing you can to determine the level of cancer and then figure out the treatment options. Best of luck! 🤞🙏

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Thanks for posting. Even with all of the support of this great group, It’s still hard choice to make. I’ll be seeing a Rad Onc and Med Onc in two weeks. After that I will need to decide on treatment. Seems like generally the younger group of guys are going for RP. It’s been a nightmare in my head.

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