@jim18 I don't think that is the reason for issues with insurance:
1. They are money driven and don't want to support new interventions that are not SOC from NCCN. Gives them and out.
2. There is little proof that ANY treatment for Gleason 6 folks makes any real sense, other than helping psychologically those who "just want something done!"
@marko49 Medicare and most commercial insurance covers RP and RT for Gleason 6 disease. Those are more expensive than focal, but there is no easy way to decline coverage. I did not say focal makes sense. Just that it is better than the alternatives if someone has to do something.
Yeah, at the time I was convinced that I had no metastasis with all the negative results of preliminary testing. I do wonder if perhaps the first PSMA wasn't performed properly. I have read where the PSMA pet scans are about 85% accurate.
@swl1956@surftohealth88 Just so. I believe a micrometastasis needs to reach millions of cells before even PSMA-PET can detect it. And for that matter, needle biopsies are almost literally needles in haystacks — if they tell you that your Gleason score is 4+3 for example, that's just the highest they found in their samples. They might have narrowly missed a spot with Gleason 8 or 9 too small to register on the MRI.
There is no way at all to know for sure what's happening with prostate cancer. We're just taking samples, making scans, and playing odds.
That's why I (personally) have been happy to err a bit on the side of overtreatment, to tilt the odds more in my favour with stage 4 PCa: I'd rather live *with* some uncomfortable side-effects than die *without* them. YMMV.
@swl1956@surftohealth88 Just so. I believe a micrometastasis needs to reach millions of cells before even PSMA-PET can detect it. And for that matter, needle biopsies are almost literally needles in haystacks — if they tell you that your Gleason score is 4+3 for example, that's just the highest they found in their samples. They might have narrowly missed a spot with Gleason 8 or 9 too small to register on the MRI.
There is no way at all to know for sure what's happening with prostate cancer. We're just taking samples, making scans, and playing odds.
That's why I (personally) have been happy to err a bit on the side of overtreatment, to tilt the odds more in my favour with stage 4 PCa: I'd rather live *with* some uncomfortable side-effects than die *without* them. YMMV.
Agreed 100 % ! Biopsy samples just 1% of the gland and scans can not see it all.
I would also always choose more thorough and more aggressive path but my hubby would not *sigh so I had to really balance all of the decisions and present options to him with "walking on eggshells" dexterity : ((.
It was very challenging at times ... Even with BCR and deciding about groin node RT (yes or no). Luckily we had second opinion with UCLA top RO who said "do it" so I could exhale somewhat. Between Drs and him I am really feeling often like Gumby (character) ... Even doctors were nonchalant regardless of his highly aggressive cancer : ((( So it was me pulling on one side and doctors and him on the other .
Yeah, at the time I was convinced that I had no metastasis with all the negative results of preliminary testing. I do wonder if perhaps the first PSMA wasn't performed properly. I have read where the PSMA pet scans are about 85% accurate.
@swl1956 Probably much less than that since it cannot detect anything smaller than 2mms in diameter.
On a ruler, that’s not very big but microscopically it is enormous and very capable of causing recurrence.
Nothing was done wrong by the doctors…
Further, nothing was done wrong by you; you made an educated choice based on the evidence you were presented and it turned out that some evidence was missing. That’s it.
Phil
Back in 2020 when I was looking for treatment for my 3+4=7, I was not a candidate for focal therapy due to having lesions in both sides of my prostate. (I wound up getting proton radiation treatments.)
brian,,I am in similar situation. gleason 7 3+4, tumors in two spots. am finishing 20 session Rt.
photon . 20 sessions over 30 days in chicago Uchic. LINAC (non ethos)
brian,,I am in similar situation. gleason 7 3+4, tumors in two spots. am finishing 20 session Rt.
photon . 20 sessions over 30 days in chicago Uchic. LINAC (non ethos)
Since hitting my nadir (of 0.198 on 4/14/2022), my most recent PSA was 0.366 (two months ago). For still having a prostate, that’s good.
There’s always concerns about after-effects and possible recurrence, but now 5y3m later….nothing. And now at 71y/o, I’m hoping that it stays the same going forward.
We planned out everything regarding my treatments very meticulously, and it’s working out exactly as planned; textbook outcome.
@jim18 I definitely know folks that have done, and will do this. They are usually the ones with the most experience.
Dr. Scholz was correct in stating that the trials on whether this had better or worse long-term recurrence are not mature yet. So, we really don't know either way. But the chances of side effects are definitely lower.
One reason is that is done live, in-bore with a perimetric MRI. So the doc is viewing exactly what is happening live and the AI programs delineate the borders everywhere. Not perfect but any movement happens live where as most radiation, e.g., is done with static CT scans taken earlier. Truebore, Cyberkife and other brands have mechanisms to deal with those movements with the main one being the use of fiducials. Not a fan of the side effects with those either but the machine developed and trialed at UCLA gets around that with better technology (they claim) with 4 shots per second as the doc also sees live what is happening and any movement stops the machine instantly.
Most of side effect information for radiation are based on older technology but again we don't have mature data on the newer machines or many of the full ablation approaches to know with certainty.
I will trade a shorter life with less toxicities if that is the choice I get to make. The beauty of having options. No one size fits all. Tradeoffs. Always tradeoffs. Do your research with as little bias as possible and pick your poison.
@marko49 You are right. I was diagnosed with Gleason 6 about 3 years ago. I felt like I had to do something. I researched Tulsa Pro alot. I even went so far as to have the CT scan done to make sure I did not have any crystals or substances that would interfere. One doctor in Florida and one here in Phoenix were all ready to ablate both sides since my cancer is on both sides. I've had 3 MRI's that have not shown any lesions, Pirads 2 and Pirads 1. I guess if you have no lesions, they would need to ablate both sides. As time went on I became more comfortable with just living with cancer in my prostate. I ended up not having the Tusla Pro and am on Active Surveillance with the Mayo Clinic here in Phoenix. At 72 I am hopeful and pray that my Gleason 6 does not turn into 7, if it can do that, or if because of the 6 I am more susceptible to getting 7 or higher does not happen. I also have learned we rarely really, really know what is going on in our prostate.
@marko49 You are right. I was diagnosed with Gleason 6 about 3 years ago. I felt like I had to do something. I researched Tulsa Pro alot. I even went so far as to have the CT scan done to make sure I did not have any crystals or substances that would interfere. One doctor in Florida and one here in Phoenix were all ready to ablate both sides since my cancer is on both sides. I've had 3 MRI's that have not shown any lesions, Pirads 2 and Pirads 1. I guess if you have no lesions, they would need to ablate both sides. As time went on I became more comfortable with just living with cancer in my prostate. I ended up not having the Tusla Pro and am on Active Surveillance with the Mayo Clinic here in Phoenix. At 72 I am hopeful and pray that my Gleason 6 does not turn into 7, if it can do that, or if because of the 6 I am more susceptible to getting 7 or higher does not happen. I also have learned we rarely really, really know what is going on in our prostate.
@bobgolf Just in case you haven't seen this from PCRI (best resource I've found): https://youtu.be/L4jotFaPi8I
Hope it helps. 100s of videos from the top docs in the country.
@marko49 Medicare and most commercial insurance covers RP and RT for Gleason 6 disease. Those are more expensive than focal, but there is no easy way to decline coverage. I did not say focal makes sense. Just that it is better than the alternatives if someone has to do something.
@swl1956 @surftohealth88 Just so. I believe a micrometastasis needs to reach millions of cells before even PSMA-PET can detect it. And for that matter, needle biopsies are almost literally needles in haystacks — if they tell you that your Gleason score is 4+3 for example, that's just the highest they found in their samples. They might have narrowly missed a spot with Gleason 8 or 9 too small to register on the MRI.
There is no way at all to know for sure what's happening with prostate cancer. We're just taking samples, making scans, and playing odds.
That's why I (personally) have been happy to err a bit on the side of overtreatment, to tilt the odds more in my favour with stage 4 PCa: I'd rather live *with* some uncomfortable side-effects than die *without* them. YMMV.
@northoftheborder
Agreed 100 % ! Biopsy samples just 1% of the gland and scans can not see it all.
I would also always choose more thorough and more aggressive path but my hubby would not *sigh so I had to really balance all of the decisions and present options to him with "walking on eggshells" dexterity : ((.
It was very challenging at times ... Even with BCR and deciding about groin node RT (yes or no). Luckily we had second opinion with UCLA top RO who said "do it" so I could exhale somewhat. Between Drs and him I am really feeling often like Gumby (character) ... Even doctors were nonchalant regardless of his highly aggressive cancer : ((( So it was me pulling on one side and doctors and him on the other .
-
Like -
Helpful -
Hug
3 ReactionsMy policy is to say never say never with this cancer. For one year I claim undetectable until the next test 6 months late.
-
Like -
Helpful -
Hug
2 Reactions@swl1956 Probably much less than that since it cannot detect anything smaller than 2mms in diameter.
On a ruler, that’s not very big but microscopically it is enormous and very capable of causing recurrence.
Nothing was done wrong by the doctors…
Further, nothing was done wrong by you; you made an educated choice based on the evidence you were presented and it turned out that some evidence was missing. That’s it.
Phil
-
Like -
Helpful -
Hug
1 Reaction@brianjarvis
brian,,I am in similar situation. gleason 7 3+4, tumors in two spots. am finishing 20 session Rt.
photon . 20 sessions over 30 days in chicago Uchic. LINAC (non ethos)
can I ask how you are doing after 6 years?
thanks for the info. hope you are well.
-
Like -
Helpful -
Hug
2 Reactions@matthewdore I’m doing great.
Since hitting my nadir (of 0.198 on 4/14/2022), my most recent PSA was 0.366 (two months ago). For still having a prostate, that’s good.
There’s always concerns about after-effects and possible recurrence, but now 5y3m later….nothing. And now at 71y/o, I’m hoping that it stays the same going forward.
We planned out everything regarding my treatments very meticulously, and it’s working out exactly as planned; textbook outcome.
-
Like -
Helpful -
Hug
2 Reactions@marko49 You are right. I was diagnosed with Gleason 6 about 3 years ago. I felt like I had to do something. I researched Tulsa Pro alot. I even went so far as to have the CT scan done to make sure I did not have any crystals or substances that would interfere. One doctor in Florida and one here in Phoenix were all ready to ablate both sides since my cancer is on both sides. I've had 3 MRI's that have not shown any lesions, Pirads 2 and Pirads 1. I guess if you have no lesions, they would need to ablate both sides. As time went on I became more comfortable with just living with cancer in my prostate. I ended up not having the Tusla Pro and am on Active Surveillance with the Mayo Clinic here in Phoenix. At 72 I am hopeful and pray that my Gleason 6 does not turn into 7, if it can do that, or if because of the 6 I am more susceptible to getting 7 or higher does not happen. I also have learned we rarely really, really know what is going on in our prostate.
-
Like -
Helpful -
Hug
3 Reactions@bobgolf Just in case you haven't seen this from PCRI (best resource I've found): https://youtu.be/L4jotFaPi8I
Hope it helps. 100s of videos from the top docs in the country.
-
Like -
Helpful -
Hug
2 Reactions