Optilume, scans, and tests

[SherpaT]

I found an old post on this "Balloon" based BPH treatment but no replies.

I had a cystoscopy today as part of my decision making process for BPH treatment first or Gleason 7 (4+3) treatment first. My urologist gave me a brochure for a procedure he does called Optilume from a company called Laborie. I checked out their website and it seems like it might be a viable option as it has a short recovery time, so could do it before RT. Anyone have any experience or input on this procedure? It is FDA approved, not sure about insurance.

PSMA/PET scan with Pylarify was cancelled twice due to insurance and provider glitches and rescheduled for March. This test is not even available in Yuma, Az. and apparently not that easy to schedule in Phoenix. I want to see that result before deciding on a course of action. I also asked for an Aptera.ai test, which my provider knew nothing about, but is supposed to be checking on it.

I was on active surveillance for 5 years thinking I was in a pipeline, ready to move quickly if things changed. They did, but the pipe leaks! My bad, I guess, but I'm lucky to have had little experience with the medical machine for 70 or so years before the PC.

[janebob99]

You're doing the right things. Hope insurance comes through for you.

You may want to get your provider to order the Decipher gene test. It is very popular these days.

Bob

[SherpaT in reply to janebob99]

Is Decipher of much value with confirmed 4+3 with IDC present? I'm not sure what it actually provides and my urologist didn't think it of value at this point? I do always think that many doctors have the expertise and the experience but not the cancer...

[janebob99 in reply to SherpaT]

The Decipher test may be used to help decide how long to do ADT: 6, 12, 18, 24 months, depending on the score. Do you have a medical oncologist on your team? What treatment are you considering?

[SherpaT in reply to janebob99]

Thanks for explanation of use. Just urologist and Radiation oncologist. Still waiting for the PSMA scan. RO suggests starting with short term ADT, not sure yet what drug, then 20 or 40 treatment RA. I'm not considering RP as of now and based on what I read, not eager for ADT. Scan needed to know more, as stated, maybe restriction treatment first. He doesn't like SBRT, but I don't want to travel all over for treatment, and alternative is Phoenix for me. He does have experience and has good reputation locally (Yuma, AZ). Probably could get urologist to order Decipher and hopefully that ApteraAI.

[janebob99 in reply to SherpaT]

Good plan. You might consider adding a Medical Oncologist, even though you may not have metastasis. You could decide to do that after the results of your PSMA-PET scan. The MO will be the best one to advise you on ADT use. I think getting the Artera AI test is essential. Medicare covers it now. One thing you may want to consider is estrogen patch therapy in place of Lupron-based ADT. It has many advantages and few disadvantages. If you send me a private message with your email address, then I will send you 10 papers on estrogen use.

[janebob99 in reply to SherpaT]

You may want to ask about the Orogovyx pill, instead of the Lupron shot. Orogovyx (Relugolix) has a much faster testosterone recovery time (< 1 month) when you eventually stop the ADT, as compared to many months before T-recovery with Lupron treatment.

[Bourbon2024 in reply to SherpaT]

are you referring to Artera test?

[SherpaT in reply to Bourbon2024]

Yes, sorry. Waiting for some confirmation from urologist office, will probably ask for Decipher also.

[SherpaT]

Thanks,

I am already considering the Medical Oncologist as my RO just said "they all do the same thing" when I asked about medications. Since I did not have the test scan results, and won't the next time I see him, I'm not even sure what he intended to use, though it was a shot of some sort. I know I will want to know what drug he is wanting to use before any decisions. I would rather not do it at all. Once again, I find providers wanting to stick with what they know vs what's new, and I imagine what's going through their head is "If you think you know more about it, why are you here?" I really wish I could have gotten the PSMA 3 weeks ago when it was first scheduled!

Sorry, not sure how to send a private message.

[Bourbon2024]

get as much data on your situation as you can. It’s all about you and your health. You’re the skipper of your boat!