So hard to study focal therapy

Posted by bjroc @bjroc, Sep 16, 2023

Right now it is super hard to find a doctor willing to do focal therapy, or information about it, or almost anything really. There seems widespread condemning rather than objectivity. There is also rampant over-classification of what is serious versus something that could have a focal therapy. Such as a tiny 4+3 or 4+4 cleared by PSMA scans, is often eliminated when the total volume of 4 might be less than most 3+4 that have been around awhile. See my discussion on that here: https://connect.mayoclinic.org/discussion/why-is-volume-of-the-cancer-not-used/.

This to me is just more over classification, something like pathology biopsy are sometimes over classified so that pathologist cover their arse or never under-estimate since it is potential lawsuit territory (why Epstein at JHU was popular for second opinions till he left).

See photo from recent ANCAN talk on "is focal therapy right for you". Look how many focal therapy there are. One rarely sees anyone mentioning any of them, if they do on some lists there is lots of condemning, one also can't find even doctors that do them because it is so almost "hidden". Even Mayo has docs that do a few focal therapy on that list, but you wouldn't know it as some are interventional radiologists and are not mentioned most prostate places/websites or discussions. I think the whole field of focal therapy needs to turn around, including discussions. All the treatments have issues and problems, but the worst problem is a vacuum of info on focal therapies since there are many now. But finding info or doctors is just about impossible. Not actually asking any question here as I may have my own treatment plan soon (Tulsa or Proton but we will see as anything possible still), but this has been a hard process to find info, doctors, help on anything but radiation therapy or RP.

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

Can I asked what you mean by Focal Therapy?

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@jc76

Can I asked what you mean by Focal Therapy?

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See the picture attached, click on it and bring it up - many focal therapy listed. I do think the criteria for "focal" needs to be things like can it be reached with those therapies, psma clear, volume since these focal therapies are limited in volume killing capabilities (not as much gleason which is for RP and Radiation) plus any other imaging not showing mets, perhaps more. But I do not think it should be thought out the same way as radiation oncologist and current RP urologist look at it. The inclusion criteria should be wide, now it is almost nothing.

Here is the webinar
https://ancan.org/webinar-is-focal-therapy-right-for-your-prostate-cancer/
I think the speaker is sometimes trying to apply standard urology criteria and in other places trying to open it up for more "inclusiveness" I will call it. I don't think the criteria should be the same old, same old.

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Tried to get HIFU at Mayo Phoenix but Dr. Frendle who does it said there were calcifications in my120 gram prostate that were in the way, and he was afraid he would not be able to get the whole lesion as it was in only one area. He said "I don't want you to be my Guina pig." So, I did the 5 proton treatment instead.

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I just had HIFU (High Intensity Focused Ultrasound) on one side of my prostate 9/15/23 with a Gleason 7. The other side is all Gleason 6 and I have elected active surveillance. The HIFU eliminated the small Gleason 7 lesion, and one centimeter around for safety. I have a catheter for a week. Doctor stated that this procedure can only be done on lower part of prostate. I am 57 and thankful to be getting erections, although they are uncomfortable with my catheter in. I go back on 9/22/23 for them to remove catheter, fill bladder, and make sure I can urinate. I am on Flomax and Ibuprofen. I believe the HIFU removed all Gleason 6 on one side and the Gleason 7 lesion. The Gleason 6 on the other side is large and was in most cores on 2017 biopsy and on 2023 biopsy. The 2023 biopsy was to check the Gleason score of the new found lesion. I am fortunate to live an hour away from the Mayo Clinic in Rochester, MN. I am due for an MRI in 6 months to check on both sides of prostate.

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There is a new treatment center in Greenville, SC that I just heard about. Don't know anymore about it than this coverage. First time I have heard "robotic" used in conjunction with focal treatment but that may be my ignorance on the subject. May or may not have any impact on long term effectiveness.

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@merwether

There is a new treatment center in Greenville, SC that I just heard about. Don't know anymore about it than this coverage. First time I have heard "robotic" used in conjunction with focal treatment but that may be my ignorance on the subject. May or may not have any impact on long term effectiveness.

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I would be interested to know this as well. I did a search and I'm only seeing the big players, Prisma, Gibbs, SHRS etc..

Which is probably as good as most, although from my expierence Prisma seems better funded (ie newer equipment) but the experienced Drs had to get an appt with.

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@jrobitai

I would be interested to know this as well. I did a search and I'm only seeing the big players, Prisma, Gibbs, SHRS etc..

Which is probably as good as most, although from my expierence Prisma seems better funded (ie newer equipment) but the experienced Drs had to get an appt with.

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Down towards the bottom is talk about HIFU is what I see:
https://prismahealth.org/services/cancer-care/types/prostate-cancer
HIFU is only good if the lesion is right near the rectal area basically, and prostate size limits HIFU greatly.

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@bjroc

Down towards the bottom is talk about HIFU is what I see:
https://prismahealth.org/services/cancer-care/types/prostate-cancer
HIFU is only good if the lesion is right near the rectal area basically, and prostate size limits HIFU greatly.

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Thanks for the link - I am a patient at both Prisma & SHRS & sadly am not a HIFU candidate.

..and UR right - HIFU is limited by range (size) and calcification. TULSA seems less limited by size but calcification is still an issue but TULSA also adds the precision of doing this under an MRI.

Too bad it's not in this area (yet).

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@jc76

Can I asked what you mean by Focal Therapy?

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Focal therapy is another term for ablation. Focal draws attention to the fact that it is targeted. Ablation draws attention to the fact that it kills the cells in situ (on site) rather than removing them (prostatectomy) or suppressing them (ADT).
With respect to prostate cancer, this generally means identifying cancer that is localized (prostate cancer generally forms nodules) and well-contained (there is one or a few spots of concern, not many) in the prostate.
Metastasis, in contrast, means the cancer has spread beyond the prostate itself. The type of cancer cells can be identified as coming from the prostate, but they are growing other places--eventually in the bones.
Not just @bjroc, but many researchers have longed to add focal therapy to their arsenal of cancer treating strategies. So far, it has not become a front line treatment. Why?
One, as various contributors have mentioned it's limited. While many techniques have been tried to kill prostate cells in a specific location, none have been entirely successful. (Radiation, radioactive seeds, other implanted "seeds", lasers, freezing, ultrasound, specialized radiation like proton beams, and even more.) Obviously part of the problem is knowing what to destroy and part of the problem is precisely targeting tiny spots in the very middle of your abdominal core. Breasts, in contrast, are much more accessible.
Two, the equipment is incredibly expensive. This means that each new technique or variant requires huge investments of capital, and once this has been done, huge marketing efforts (by the few who have the equipment) are required to reap a return that might pay for these investments as well as the specialized practitioners. Posting information online and sponsoring non-profit foundations to get the word out can be part of those strategies. (As an analogy, right now an investment company sponsors adds discussing how to choose between their three much larger competitors! They want you to trust them to help you make your decisions. This could conceivably happen in medicine, even in cancer medicine.)
Three, ablation (focal therapy) creates scarring. This scarring--the dead cells left behind--confounds the future monitoring and treatment of the cancer, which is likely to recur, since even if the cancer nodules are eliminated, the same prostate that formed them is still there.
Four, as with all prostate cancer treatments, the often slow development of prostate cancer frustrates evaluation of treatment alternatives. When active surveillance is a reasonable option, you know that outcomes must be in doubt. Very high numbers of men with prostate cancer live 5, 10, and 15 years. Most get it after age 50--the average age is mid-60s. This makes evaluating treatment options a lot tougher than if people die in 18 months. My sister's brain cancer "breakthrough" turned 18 months into 36 months (average from diagnosis to death.) That makes research easier than turning 10 years into 20 years, especially since people also die from other causes.
So why do ablation/focal therapy? Because while PC has no symptoms for a long time, PC treatments affect poop, piss, and passion. The literature refers to this as health-related quality of life (hrQOL etc). It's a step more aggressive than active surveillance, which can extend for years, but less aggressive than RP, ADT, and more extensive ablation (less focal if you will!)

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@jrobitai

Thanks for the link - I am a patient at both Prisma & SHRS & sadly am not a HIFU candidate.

..and UR right - HIFU is limited by range (size) and calcification. TULSA seems less limited by size but calcification is still an issue but TULSA also adds the precision of doing this under an MRI.

Too bad it's not in this area (yet).

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Tulsa has the same calcification limits so no use pursuing if you have calcification, most places are in FL or TX that do it anyway. Some of the others on the image/picture at top might be worth pursuing, but so hard to find places, just not sure how one even gets a perspective on most of those. Toxic direct injection for example, it is done in other cancers and it works but who does it? I have no idea.

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