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DiscussionTULSA PRO Results at 3 plus years - Treated for High Grade Gleason 8
Prostate Cancer | Last Active: 1 day ago | Replies (29)Comment receiving replies
Replies to "My husband inquired about TULSA but was not a good candidate since lesion was too far..."
@surftohealth88 I am happy to hear his procedure worked out perfectly for your situation. It is my understanding the PSMA PET can miss about 25% of or EPE's. I would guess that perhaps some radiation or hormone treatments might be forthcoming to treat that EPE??? Considering that revelation, you made a great choice and I am so happy for you and your husband!
Overall, I believe the combination of a T3 MRI and PSMA PET is about 90 to 95% accurate when the PSA is over 2. The gold standard is the biopsy. But that isn't perfect either and would have missed the EPE. That data (90 to 95%) is going off of memory, so there may be newer numbers out there regarding the scans.
I am curious if your husband biopsy sample had genomic testing prior to his surgery which may have indicated they might be looking at the Gleason 9 rather than the 4+3 that you mentioned. Often, they don't do the genomic testing unless the biopsy indicated a Gleason 8 or greater. So, maybe that was not suggested. My TULSA doctor asked for this testing prior to my procedure. In contrast, the urologist who wanted to remove my prostate was going to do that after the prostate was removed. The Decipher test analyzes 22 genes to assess the risk of metastasis. In essence, the biopsy/gleason grades are based on how aggressive the cells look under a microscope. Studies indicate that genomic testing is a better indicator at predicting how the cancer will behave than the Gleason score. It might provide you with some comfort if a Decipher score came back indicating the cancer may not be as aggressive as the Gleason score would indicate. Sadly, for me...it was pretty much in line with the Gleason score.
I know of some friends who had other methods to treat their cancer when it was learned TULSA couldn't reach the cancer such as HIFU and Cryoablation and Radiation with good results. I am not trying to tell anyone what to do...There are a variety of ways to treat cancer. In some cases, the prostate can be reduced using medication bringing the tumor within range for TULSA. In the end...due to the EPE...you made a great choice and the right choice. TULSA wouldn't have treated that EPE.
I understand that EPE's are discovered in about 22% of the time when doing an RARP. That is a plus of the RARP and in those cases where an EPE is discovered...the cancer is often upgraded as you mentioned was the case with your husband's cancer. That is another reason that the genomic testing is important after biopsy rather than after surgery or treatment...this might open the eyes of those reviewing the scans and the pathology reports to look for spread of the cancer.
I would hope that the experienced doctors might have some insight to EPE's based on the lesion/tumor location and perhaps other features that might enable them to guess what patients are more likely to have this issue and therefore not a good TULSA candidate.
Hopefully, we can all be respectful of the methods that we feel most comfortable with. I merely hope to create awareness that TULSA is available. As mentioned, the CAPTAIN trial results will be helpful...one way or the other. From the early results/data update video (that I posted) and conversations that I have had with some experts in the field, I believe the results might be a game changer in how prostate cancer is treated when it is confined to the prostate. That isn't saying it is perfect. None of the treatments are perfect. I would guess the goal is to find the most effective treatment to eradicate the cancer and if that can be accomplished with less risk and fewer side effects...that would be a nice bonus.
As you know, TULSA is an outpatient procedure. I was out doing some gardening the same evening that I had TULSA. I didn't need pain meds that evening either. Other than the catheter, it wasn't really a big deal. I have had back surgery, kidney surgery and a tumor removed from my neck...this was the easiest procedure that I have experienced. My friends who had their prostate removed had a bit more of a recovery than myself and sadly, some of their functions aren't quite what they used to be. But we are all different. I would guess some TULSA patients struggle too. I am glad your husband recovered quickly.
I wish you and your husband perfect health and happiness...I apologize for the lengthy response. I care about this stuff and to to be honest...It hurts me when a few of my friends have experienced some challenges as they move forward following their prostate treatments. I almost feel guilty, because my life is normal other than having scans and PSA tests. I was the guy who had more lesions, and a higher grade cancer and my quality of life didn't change.
Thank you for sharing such a positive story about your husband's RARP. People need to hear that too!
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@surftohealth88 Agreed…and a new member just yesterday stated that he had Tulsa for a single lesion - not high grade - and had a fairly rapid BCR and is now on ADT.
So what went wrong there??!! Poor surgical technique? Lack of experience? Some unknown factor we might never know?
Unfortunately, even with the best research we, as patients, can do, settling on a treatment plan is like picking out wallpaper: it looks great in the sample book, but after it’s hung you realize you might have made a mistake.
Sometimes our decisions pan out but it’s never a guarantee…
Phil