TULSA PRO Results at 3 plus years - Treated for High Grade Gleason 8
In February of 2023, I was diagnosed with prostate cancer. Of my 12 core biopsy, 5 came back with cancer. I had 1 Gleason 6, 2 Gleason 7's a 3+4 and a 4+3 and I had 2 Gleason 8 samples. They sent the Gleason 8's to Decipher for Genomic testing and this confirmed I had aggressive cancer with a Decipher score of .71. After 3 years it appears I am still cancer free....multiple scans (both MRI's and now a post treatment PSMA PET) and blood tests...my cancer has taken a hike and not visible anywhere.
Prior to my TULSA treatment, I had a pre-treatment PSMA PET scan that indicated my cancer was confined to my prostate. I believe the PSMA PET scan is a game changer. In my opinion, if the PSMA PET indicates the cancer is confined to the prostate...TULSA will eliminate the cancer regardless of the Gleason grade when properly applied. In my opinion, patients should not be restricted to low grade or intermediate grade.
I did have some difficulty urinating after I removed the catheter on day 11. I jumped into a hot bath tub and that did the trick and perhaps saved me from having it put back in. This was my only issue. Other than that, everything worked perfectly and did so in quick fashion.
Since my TULSA took place prior to the AI advancements that from what I understand assist with mapping and may increase or boost the energy in the cancer area...my doctor went over that area of aggressive cancer a couple of extra times.
Since my treatment, I have had multiple MRI's, a PSMA PET scan and naturally PSA tests. My PSA is steady, I still have a 22 cc prostate and still produce PSA. All of my scans have been perfectly clear. They still do a prostate density calculation and it remains .10 or less. I am 68 years old and in good shape. I don't need medication to assist with any of my functions.
I do feel that doctors who choose not to mention TULSA to their patients are doing them a disservice. I recognize that stating prostate removal is barbaric may be controversial...but, if the PSMA PET and MRI's indicate your cancer is confined to the prostate, why would anyone have their prostate removed? To be honest, I still think this should be an option if the cancer has spread...the cancer that has spread will be attacked using other methods...just as it is if the prostate is removed.
I recognize that I have a prostate that has demonstrated a propensity to grow cancer. So, it might return. With that said, I don't have any signs of cancer now and if a new cancer develops, I can have TULSA again. A couple of doctors who are experts in this field told me that there is no way that my cancer is going to develop in the treated area as that area has absolutely no blood flow. My PSA is now checked every 6 months (rather than 3) and going forward, my MRI's will be once a year. I won't be having additional PSMA PET scans unless my PSA velocity rises at a rate consistent with cancer.
The results of the CAPTAIN trial might just change everything...The CAPTAIN trial (NCT05027477) is a prospective, multi-center, randomized controlled trial comparing MRI-guided Transurethral Ultrasound Ablation (TULSA) to radical prostatectomy (RP) for localized, intermediate-risk prostate cancer.
My purpose of posting this is merely to help others in their decision making process. Regardless of what treatment you or your loved one may choose to treat your cancer, I wish you success and a life of happiness. I don't check this board often, but will try to check in every few months or so. I am ready to move forward...thank you for understanding if you don't receive an immediate response. I just hadn't seen too many people with the trifecta of prostate cancers Gleason's 6,7 and 8 treated with TULSA and thought my history might be helpful to some with aggressive prostate cancer.
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@heavyphil I have had access to doctors with extensive experience...that makes a difference when being treated. Additionally, it has been published and available in video presentations that most TULSA failures occurred in patients who had a calcification within the prostate. This obstacle has the potential to disrupt treatment or deflect treatment within the prostate leaving some cancer behind. This is something that should be checked prior to treatment.
I agree with your thoughts...it may have been experience of the doctor...or an unknown factor. Was this patient required to send his biopsy out for genomic testing? Did he have a pre-treatment PSMA PET scan? Did he have a post treatment PSMA PET scan or a biopsy to verify that they determined was a Biochemical recurrence (BCR)? Cut and Paste - With prostate cancer is a rising PSA level after initial curative treatment (surgery or radiation), can occur in roughly one-third of patients.
With that said, with TULSA...a patient is still going to generate PSA. I can't imagine going on ADT without additional verification (PSMA PET, a Biopsy and an MRI) that there is really cancer there. In fact, you can have bounces in your PSA since your can still have an inflamed prostate. If you can find the link to this individual, I'd be curious to learn what went into the decision making process to start this guy on ADT. Was this guy's doctor doing prostate density calculations.
If they failed to do a pre-treatment PSMA PET scan, cancer could have easily already have spread beyond the prostate and TULSA has absolutely no way of treating metastatic disease. The pre-treatment PSMA PET and and a scan for any calcification are critical steps that can impact the success of the TULSA treatment.
In closing, I will always be worried that my cancer will return. But, I would have been worried about that regardless of the procedure that I selected. Everyone must make their own choice and be comfortable with whatever that might be.
@oldgreenpaint I wish your brother good health, healing and happiness. It is nice that he has you (a brother who has experience) help him as he navigates a path forward.
Can Tulsa be used post radiation as salvage treatment assuming tumor is contained?
@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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4 Reactions@neilmartin There are several articles that indicate TULSA is used for salvage treatment when radiation may not have worked. If you do a google search, I believe the article or links will come up.
@russm Yes indeed - comfort level is so important…
But my point was that every treatment can fail – surgery, radiation in all its forms, and even TulsaPro.
But your treatment does bring to light the fact that whole gland ablation is possible, even in cases with high Gleason score and widespread cancer cells. That is truly encouraging.
Phil
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1 ReactionI have PSA 5.9 then MRI.. 2 times.. result is cancer…then biopsy 1 time.. cancer with Gleason 7 but pattern 4: 40%… plus cribriform .. then PSMA PT SCAN ..no tracer activity within prostate gland..then Decipher 0.24 low risk …I was so confuse….Gleason 7...look like low risk but pattern 4:40 turn to high plus cribriform turn to high Decipher 0.24 low risk...PSMA PET SCAN indicated no cancer....was very difficult to make decision but I did….want to take cancer out from my body. I was a good candidate for AS but during my surgery...
They do not know and you do not know on until they get down there and see when cancer goes out of prostate, in my case my left lobe margins did come back positive when my surgeon send my prostate tissue to check on clear margins.
russm saying "I had a pre-treatment PSMA PET scan that indicated my cancer was confined to my prostate. I believe the PSMA PET scan is a game changer. In my opinion, if the PSMA PET indicates the cancer is confined to the prostate" Mine was excellent too but during my surgery left lobe margins did come back positive and not just for me—I know that others experienced the same thing...ask wheel1 same thing
Trust your gut feeling and make it right
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1 Reaction@mozir You made some great points. You certainly made a great decision. From what I have read, a PSMA PET scan with no tracer activity in the prostate indicates either no cancer is present, or the cancer is PSMA-negative. It may also mean low-grade cancer is present.
Considering your "cribiform" diagnosis and from what you indicated the PSMA was negative, I am thrilled for you. That low Decipher score with cribiform is confusing...I can certainly understand how difficult it was for you to make a decision. I commend you for having the instinct and courage to get that out of your body!
Sadly, none of the treatments are perfect and there isn't a magic pill. I understand that an MRI may be the best tool for detecting cancer lobe involvement or EPE...but that too can miss some of those moving beyond the capsule. Cut and paste - Multiparametric MRI (mpMRI) is the preferred imaging modality for identifying both the specific lobe involvement and extraprostatic extension (EPE) of prostate cancer, with accuracies reaching up to 84% in predicting capsule breach. The scan identifies key anatomical signs, such as capsule bulging, irregular contours, or tumor extension into the fat, which help determine if the disease is organ-confined or spreading. When I spoke of PSMA PET, that was in combination with the MRI...because nearly all prostate cancer patients will have the MRI prior to a PSMA PET scan. I recognize they aren't perfect either.
According to an article published in the National Institute of Health, studies have shown the prostate cancer with "cribiform" are more likely to extend beyond the prostate capsule. Hopefully radiologists will give the scans an extra look or perhaps use AI at some point to identify the extensions when they know about biopsy indicated cribiform. This might become something that might either eliminate a patient from having TULSA performed...or at the very least a discussion about that added risk.
I may have cancer outside my prostate too. But, I would have thought it might have displayed some signs at this point or showed up on scans after my treatment. I am not a doctor and as mentioned, I was just sharing my case to enlighten others about TULSA. A number of articles discuss what a "game changer" the PSMA PET scan has been as a tool to assist with prostate cancer spread. They also state it isn't perfect and as mentioned, some prostate cancer doesn't light up the PSMA. If you type the cut and paste into a google search, the article should come up. I am just thankful, they are improving the scans and that we have more treatment options. Considering your pre-surgery PSMA was negative...and the biopsy indicated cancer...I not sure a PSMA PET would have been as helpful as it is for patients with PSMA positive cancer.
Below is a cut and paste from Johns Hopkins (using the words "game changer" -
"PSMA PET scans are considered a major game-changer in prostate cancer management, offering superior sensitivity and specificity compared to conventional imaging (CT/MRI/bone scans). By detecting tiny, recurrent, or metastatic tumors (as small as 2 mm), these scans enable earlier, more accurate staging and personalized treatment strategies.
Why It Is a Game-Changer:
Superior Sensitivity: Detects prostate-specific membrane antigen (PSMA) proteins on cancer cells, identifying disease that other scans miss."
Again, the statement above is a cut and paste from Johns Hopkins...not from me.
I would hope that doctors will help their patients during the decision making process. If they see things like cribiform, PSMA negative prostate cancer, scans that indicate risk of spread and so forth...hopefully, their doctor (using their experience and education) will point them in the right direction. If the patient chooses radiation over surgery...surgery over radiation...or one of the newer methods of treatment, I hope their doctor would continue to support their patient.
In the end, it appears you did an incredible job of researching your cancer specifics (such as cribiform...also kind of a game changer in the decision making process) and made a decision that provides you with the best opportunity to live a long life. With all of that said, I wish you good health and happiness.
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1 Reaction@russm
I would like to share with you my methods how I decided to treat my cancer. I did a big research on all forums and internet and find that right one... now we have a new method toward prostate surgery. I consider every one...Main options were include active surveillance, radical prostatectomy (surgery), radiation therapy, and hormone therapy.
I have my surgery on March 9th...5 weeks ago.
I feel very good and feels like I do not have any surgery at all.
New surgery technique’s can give immediate continence and with nerve sparing. The old stories everyone has grown up about being incontinent and impotent after prostate surgery are giving way to the new technology. I even went home from surgery the same day.
all urine leakage had completely stopped on fourth day after catheter out . Surgery was done by one of the best surgeon(in my opinion) with certain technique which not all Surgeon’s are trained in. He is approaching the prostate from behind the bladder (through the pouch of Douglas), it avoids damaging the Retzius space, offering superior, often immediate, urinary control.
I had a DaVinci Robotic Single port (one incision) surgery.
When he is using the DaVinci single port system he places it behind your head. You are laid out basically flat. He makes one incision above the belly button, and comes in from the opposite direction from where most Surgeons operate. He said many surgeons are not familiar in the use of this approach and this is how he is able to spare the ligament.
Surgeon is able to spare what’s called the puboprostatic ligament during robotic prostatectomy. Surgeon said this technique keeps the continence mechanism intact and it also helps maintain urethral length. A longer urethra allows for more control in the release of urine reducing the likelihood of incontinence and also the Puboprostatic ligament provides support to the urethra in keeping it in its position.He further does Retzius sparing of the tissue between the bladder and the prostate which further helps with continence.
My surgery was 6 hour and during the surgery he send I was in surgery the prostate tissue to check on clear margins to the hospital pathology for staining to see whether I had the clear margins.This clearly delays the closing of the surgery and in my case my left lobe margins did come back positive and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this and at your post surgery appointment they give you the disappointing news that you have positive margin.
The stories everyone hears about how slow prostate cancer grows are stories too. Sure many prostate cancers are slow growing but as many are not. I had state-of-the-art surgery and a surgeon who was well versed in Single Port surgery along with the Retzius sparing technique for removing the prostate. I wish that every one who decide to do surgery will find surgeon who can perform it.
This is only my opinion...
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