44-yr-old prostate cancer patient seeking advice, thoughts, etc.

Posted by mayolink @mayolink, Jan 14 4:32pm

Hello all,

I’ve just been thrown into this scary world recently. I wanted to share my story and see what advice, wisdom, anecdotes, thoughts, etc. you all might have.

The Basics:
44 years old living in Salt Lake City.
Diagnosed with prostate cancer November 26, 2024.
Fairly large tumor (1.7 x 2.1 cm) in the anterior right transition zone.
Slight bulging of the prostate margin anteriorly, indicating extra capsular abutment or extension (my nomograms indicate a 66% chance of prostate-confined disease)
Gleason 7 (3+4) = Grade Group 2
Total percentage of pattern 4: 10%
PSMA PET Scan: no sign of metastatic spread and no sign of lymph node involvement.
PSA: 4.8
Free PSA: 0.3
PSA, Percent Free: 6%
Decipher score: 0.15 (low risk)
No other genetic abnormalities found (like BRCA1, BRCA2, or other predispositions to cancer

I’m currently scheduled for surgery on March 4. However, I’m still exploring all options and seeking multiple opinions.

Background:
I’m frustrated with the journey I’ve been on. In 2019, I had an acute prostate infection. I was treated with antibiotics and the infection cleared up. However, troubling urinary symptoms remained. These were primarily weak urine stream, urgency, and other minor symptoms similar to what someone with chronic pelvic plain syndrome would experience.

My doctor referred me to a urologist. At first, he suspected the infection never went away completely. I did another round of antibiotics. My symptoms ebbed and flowed over two years. My urologist eventually began to suspect cancer because of my symptoms and my slightly elevated PSA level. I had a transperineal prostate biopsy in September 2021. EVERYTHING CAME BACK BENIGN. I was enormously relieved. Around the same time, I moved to Utah.

It took me a while to establish care with a new urologist. He believed I had lingering inflammation from prostatitis and that I should try pelvic floor physical therapy. I gave that a try, but life gets in the way and I just sort of put up with my main symptoms of weak urinary stream and urgency. I went back a year later and he had a completely different diagnosis. He said I had an enlarged prostate. My prostate is slightly enlarged for someone my age, but not overly large. It measures 35cc.

I wasn’t happy with his change in diagnoses, so I found another urologist at the University of Utah. He and and a colleague first wondered if I was having trouble with mast cells and auto immune issues. I seemed to fit the profile of a man with chronic non-bacterial prostatitis. We tried some medications and tests. Finally, in October of 2024, I got a mpMRI 3T. It showed a PI-RADS 5 lesion. A month later, I received an MRI-guided targeted biopsy. That’s when cancer was confirmed.

I should note, there are also extensive calcifications and evidence of chronic prostatitis elsewhere in the gland. I have both cancer and prostatitis. It’s unclear if it’s the cancer or the prostatitis (or both) causing my main urinary issues like weak stream.

It’s been a whirlwind. From being investigated for possible cancer and being found clean…to suddenly having a fairly large tumor three years later.

I do have a family history. My dad, and two of his brothers, had it. Two were diagnosed in their 70s. One was diagnosed in his 50s. All are still alive and it doesn’t seem prostate cancer will be what kills them.

I’m more calm now than I was when my MRI first indicated a high chance of cancer. My PSMA PET scan calmed me a lot. But I’m still worried about the potential for slight extraprostatic spread, as indicated by the bulge.

I do trust the team at Huntsman Cancer Institute, where I’m being treated. My surgeon is Dr. Christopher Dechet. He is, understandably, wanting me to do surgery. I met with the radiology urologic oncologists as well. They also think surgery is a better option for me. They cite my age, and the fact that I already have urinary issues, as a reason to avoid radiation. They believe I could be severely affected by radiology-linked urinary problems if I went that route.

I traveled to the Mayo Clinic last week for some other opinions. A surgeon gave me some assurances about my Utah surgeon saying, “if you do surgery, you don’t need me and you don’t need to come here. I know your Utah surgeon. We studied together and he’s very gifted. You’re in good hands.”

I also met with a focal therapy specialist. He said the only focal therapy he would recommend for me is cryotherapy. He said some of the reviews for cryotherapy are mixed and he wanted to make sure I understood that they do MRI-guided cryotherapy at Mayo, which is much, much better than other kinds. However, he also said I’m not an “ideal” candidate. But I’m not a “bad” one either. He just thinks there’s more of a chance of prostate cancer becoming a “chronic condition” for me given my age. He is presenting my case to the Mayo tumor board to see what colleagues say. I haven’t heard back yet.

I’m also traveling to UCLA Health in early February for additional opinions.

Like nearly all guys, I want the best chance of curing the cancer and preserving sexual function. I like my sex life. It’s robust. The possibilities fill me with dread.

That’s my story. Feel free to ask questions or let me know what you think.

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

@mgc63

Hi I have prostate cancer 3+4 Gleason score I'm interested in Tulsa pro as a treatment everything I have read makes it look like the least invasive process with almost no side effects my problem is I live in New Zealand if anyone can help with the potential costs involved I would be grateful 🥲

Jump to this post

Unfortunately, if you cannot pay for the procedure privately, you’ll probably have to go with whatever your socialized medicine platform provides.
Or you can go digital and try to crowdfund your procedure; however there are sooooo many scams with that, some people might be suspicious that you yourself could be a scammer, right? Charity just ain’t what it used to be…best of luck.

REPLY
@russm

FYI TULSA-PRO FDA Approvals - There have been several FDA approvals...including recent enhancements to the TULSA procedure. You may not have been referencing TULSA regarding your FDA mention. I have read very positive things about nano-knife and may have considered that if my disease had not been so widespread in my prostate. Prior to my treatment, my prostate was enlarged. It is now slightly smaller than a normal prostate. TULSA resolved the enlarged prostate problem/nighttime trips to the bathroom and appears to have taken care of my cancer too. Maybe NanoKnife might be a good option for the younger man who is exploring his options. His very low Decipher score is a real positive for him.

If the ongoing TULSA head to head trial has similar results to the very large 30 month HIFU trial (see link to the study below) released in 2024 or better results as it should due to the active MRI thermal imaging. It might be a game changer as to how localized prostate cancer is treated. Perhaps, they will look at today's methods as being barbaric. The 30 month results indicated that HIFU was not inferior to prostate surgery. In some ways it was superior to surgery...this was for localized cancer and Gleason 7's. This study looked at the rate of cancer returning after either surgery or HIFU...and it compared side effects. This study had over 3,000 patients.

I am a living example of a person who had low grade, intermediate grade and high grade prostate cancer who had TULSA PRO. At this point, my results are perfect. The statistics with Gleason 8 indicate that even with surgery my odds of having the cancer return were high. They may come back with TULSA too....time will tell. But, at least my quality of life has not changed. If needed, I can be treated again with that method or others. If I had surgery, I still would have had undergone PSA tests every 3 months or so and I am guessing that I would have been scanned from time to time. They may have suggested hormone treatment too due to the two Gleason 8's.

A urologist at a famous teaching hospital has a video on youtube discussing his experience using TULSA on 11 patients. He mentioned that "politics" that may come into play as these new approaches might impact treatment methods. Impacting one's revenue source might cause some to push against newer and less invasive methods. With the advantage of PSMA PET scans that are much more accurate than previous scans, it is now possible to determine who has "spreading" disease and who does not. This doctor mentioned that TULSA is capable of killing high grade cancer and Dr. Scholls stated the same thing at the Prostate Cancer Research Institute.

I would encourage you to watch those videos such as this one where Dr. Scholls discusses TULSA. If you have not viewed this video, I hope you find it helpful and informative.


By the way, Dr. Scholls provides an independent opinion. He is a medical oncologist without skin in the game for the procedure.

This is the study comparing HIFU to surgery -
https://www.urologytimes.com/view/study-shows-hifu-noninferior-to-prostatectomy-for-localized-prostate-cancer
These are some of the FDA approvals for TULSA -
510k Clearance for TULSA-PRO | Profound Medical
Yes, the TULSA-PRO device is FDA approved. In August 2019, the U.S. Food and Drug Administration (FDA) granted the TULSA-PRO 510(k) clearance

Profound Medical Receives U.S. FDA 510(k) Clearance for TULSA-PRO® Thermal Boost The first of the TULSA AI modules, Thermal Boost enables predictable, customized ablation at the prostate capsule
https://www.biospace.com/profound-medical-receives-u-s-fda-510-k-clearance-for-tulsa-pro-thermal-boostthe-first-of-the-tulsa-ai-modules-thermal-boost-enables-predictable-customized-ablation-at-the-prostate-capsule
Focused Ultrasound Foundation
https://www.fusfoundation.org › Blog
Aug 29, 2019 — TULSA-PRO is the first transurethral ultrasound device to earn FDA approval. It uses real-time MRI guidance ...

September 20, 2023 Profound Medical, Inc. Imen Ferchichi ...
accessdata.fda.gov
https://www.accessdata.fda.gov › cdrh_docs › pdf23
PDF
Sep 20, 2023 — The original TULSA-PRO® System was cleared under K191200. Subsequent changes to the original system were cleared under K202286 and K211858.

Jump to this post

I did Tulsa Pro for Gleason 7 (4+3) in July. Just had my six month MRI and no sign of cancer. I liked the technology of Tulsa and was very encouraged by HIFU study mentioned above by russm. Also, the fact that all of other options are on the table if the cancer returned, made it an easy decision for me. My quality of life has not changed, in fact it’s gotten a little better as I now only have to get up one time a night to pee!

REPLY
@mgc63

Hi I have prostate cancer 3+4 Gleason score I'm interested in Tulsa pro as a treatment everything I have read makes it look like the least invasive process with almost no side effects my problem is I live in New Zealand if anyone can help with the potential costs involved I would be grateful 🥲

Jump to this post

I received the TULSA PRO treatment in November. It cost out of pocket 33K. The side effects are nil.

REPLY
@bobbygene

I received the TULSA PRO treatment in November. It cost out of pocket 33K. The side effects are nil.

Jump to this post

So that's about NZD 58K, plus travel costs. It's lot of money, granted, but when you have few/no other healthcare costs or major co-pays, it might be manageable.

Note, though, that the less-tightly-targeted radiation therapy that your universal healthcare pays for might catch additional cancer that hasn't been detected yet (making it less likely to "come back," as people describe it), so there's a potential benefit that comes with the drawback of more side effects.

REPLY
@russm

FYI TULSA-PRO FDA Approvals - There have been several FDA approvals...including recent enhancements to the TULSA procedure. You may not have been referencing TULSA regarding your FDA mention. I have read very positive things about nano-knife and may have considered that if my disease had not been so widespread in my prostate. Prior to my treatment, my prostate was enlarged. It is now slightly smaller than a normal prostate. TULSA resolved the enlarged prostate problem/nighttime trips to the bathroom and appears to have taken care of my cancer too. Maybe NanoKnife might be a good option for the younger man who is exploring his options. His very low Decipher score is a real positive for him.

If the ongoing TULSA head to head trial has similar results to the very large 30 month HIFU trial (see link to the study below) released in 2024 or better results as it should due to the active MRI thermal imaging. It might be a game changer as to how localized prostate cancer is treated. Perhaps, they will look at today's methods as being barbaric. The 30 month results indicated that HIFU was not inferior to prostate surgery. In some ways it was superior to surgery...this was for localized cancer and Gleason 7's. This study looked at the rate of cancer returning after either surgery or HIFU...and it compared side effects. This study had over 3,000 patients.

I am a living example of a person who had low grade, intermediate grade and high grade prostate cancer who had TULSA PRO. At this point, my results are perfect. The statistics with Gleason 8 indicate that even with surgery my odds of having the cancer return were high. They may come back with TULSA too....time will tell. But, at least my quality of life has not changed. If needed, I can be treated again with that method or others. If I had surgery, I still would have had undergone PSA tests every 3 months or so and I am guessing that I would have been scanned from time to time. They may have suggested hormone treatment too due to the two Gleason 8's.

A urologist at a famous teaching hospital has a video on youtube discussing his experience using TULSA on 11 patients. He mentioned that "politics" that may come into play as these new approaches might impact treatment methods. Impacting one's revenue source might cause some to push against newer and less invasive methods. With the advantage of PSMA PET scans that are much more accurate than previous scans, it is now possible to determine who has "spreading" disease and who does not. This doctor mentioned that TULSA is capable of killing high grade cancer and Dr. Scholls stated the same thing at the Prostate Cancer Research Institute.

I would encourage you to watch those videos such as this one where Dr. Scholls discusses TULSA. If you have not viewed this video, I hope you find it helpful and informative.


By the way, Dr. Scholls provides an independent opinion. He is a medical oncologist without skin in the game for the procedure.

This is the study comparing HIFU to surgery -
https://www.urologytimes.com/view/study-shows-hifu-noninferior-to-prostatectomy-for-localized-prostate-cancer
These are some of the FDA approvals for TULSA -
510k Clearance for TULSA-PRO | Profound Medical
Yes, the TULSA-PRO device is FDA approved. In August 2019, the U.S. Food and Drug Administration (FDA) granted the TULSA-PRO 510(k) clearance

Profound Medical Receives U.S. FDA 510(k) Clearance for TULSA-PRO® Thermal Boost The first of the TULSA AI modules, Thermal Boost enables predictable, customized ablation at the prostate capsule
https://www.biospace.com/profound-medical-receives-u-s-fda-510-k-clearance-for-tulsa-pro-thermal-boostthe-first-of-the-tulsa-ai-modules-thermal-boost-enables-predictable-customized-ablation-at-the-prostate-capsule
Focused Ultrasound Foundation
https://www.fusfoundation.org › Blog
Aug 29, 2019 — TULSA-PRO is the first transurethral ultrasound device to earn FDA approval. It uses real-time MRI guidance ...

September 20, 2023 Profound Medical, Inc. Imen Ferchichi ...
accessdata.fda.gov
https://www.accessdata.fda.gov › cdrh_docs › pdf23
PDF
Sep 20, 2023 — The original TULSA-PRO® System was cleared under K191200. Subsequent changes to the original system were cleared under K202286 and K211858.

Jump to this post

@russm Thanks . I very much apprreciate this update .

REPLY
@mgc63

Hi I have prostate cancer 3+4 Gleason score I'm interested in Tulsa pro as a treatment everything I have read makes it look like the least invasive process with almost no side effects my problem is I live in New Zealand if anyone can help with the potential costs involved I would be grateful 🥲

Jump to this post

Excuse my grammar what I meant to say was what costs are involved not
looking for crowd funding

REPLY
@bobbygene

I received the TULSA PRO treatment in November. It cost out of pocket 33K. The side effects are nil.

Jump to this post

Thanks for your reply I might have given the impression that I was looking for financial aid I wasn't now i can go ahead and hopefully end up with a positive result thanks again

REPLY

Everyone has their preferred treatment and opinions on the matter. Whichever you think you want to go with, be it prostatectomy or Tulsa Pro or anything else, please do more than anecdotal research and the advice of strangers on a forum. Please consult doctors who don't have a pony in the race and make decisions with all the information to base them upon. When deep diving use Google Scholar rather than just Google, filter out the endless shills out there that are paid by companies to promote their solution and get right to the evidence, research and white papers.

Remember that this is your life. None of us want the side effects, quite literally nobody. But find the option that has proven results after 5, 10, 15, 20 years - not 5, 10, 24 months. It's awfully tempting to latch on to the path of least resistance, and want to be on the cutting edge of this and that might work absolutely wonderfully for you, or it may not. Be your OWN advocate. Dig deep, get the right answer that applies you and your long term goals.

REPLY
@mgc63

Thanks for your reply I might have given the impression that I was looking for financial aid I wasn't now i can go ahead and hopefully end up with a positive result thanks again

Jump to this post

Yes, it certainly did…but glad to know that you were looking for information on TulsaPro. Best of luck…

REPLY
@survivor5280

Everyone has their preferred treatment and opinions on the matter. Whichever you think you want to go with, be it prostatectomy or Tulsa Pro or anything else, please do more than anecdotal research and the advice of strangers on a forum. Please consult doctors who don't have a pony in the race and make decisions with all the information to base them upon. When deep diving use Google Scholar rather than just Google, filter out the endless shills out there that are paid by companies to promote their solution and get right to the evidence, research and white papers.

Remember that this is your life. None of us want the side effects, quite literally nobody. But find the option that has proven results after 5, 10, 15, 20 years - not 5, 10, 24 months. It's awfully tempting to latch on to the path of least resistance, and want to be on the cutting edge of this and that might work absolutely wonderfully for you, or it may not. Be your OWN advocate. Dig deep, get the right answer that applies you and your long term goals.

Jump to this post

Sage advice and much appreciated this process has just started for me their are many options available it's about the efficacy and what best suits

REPLY
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