HI Alveneto
I was diagnosed with Gleason 7 at 51yo w/PNI (4 +years ago). I had a lot of PCa volume on both sides. Initial plans by some of the ”experts” was RP for me- I spent a lot of time looking into things- this forum helped me a lot. I learned from Johns Hopkins that there were better options than Radical Surgery/Radiation for me.
An important thing I did learn as part of my journey - is to have a second review of the pathology specimens by Johns Hopkins. The Pathologist interpretation is the root of all other plan of action “opinions” by the Urologists, Radiologists, and Medical Oncologists. Pathology interpretation according to Professor Epstein is HIGHLY subjective. Different pathologists can/will score your samples differently. Some include important morphological characteristics in their reports- some do not. A poorly performed pathology analysis can lead towards under or over treatment opinions by the subsequent opinion makers.
Over-Grading is rampant according the leaders from the Center of Excellence. The “why” is speculation- but it is well documented by Professor Klotz, and Johns Hopkins. Some propose that the Pathologists are so worried about malpractice- that they over-estimate to be “on the safe side”. This may help keep them safe- but according to the leaders- it leads towards unnecessary and over-treatment.
“Numerous publications show the clinical and economic benefits of obtaining a second opinion for Pathology specimens. Obtaining a second opinion in Pathology can in a small percent of cases lead to a complete change in diagnosis in a wide range of conditions including non-cancerous growths, inflammatory disorders, infections, and cancer. In terms of cancer, changes can be from cancer to benign (or vice versa) or from one type of cancer to another, which could have a significant impact on treatment and prognosis. A second review of Pathology more frequently also brings changes to the cancer grade or stage, which can affect prognosis as well as therapy. Jonathan Epstein, M.D.
Director of Surgical Pathology- Johns Hopkins”
Here is a link
http://pathology.jhu.edu/department/services/secondopinion.cfm
They do this for people all over the world. Its the best $300 you could ever spend. Takes about a week from when they receive it. DO NOT accept a 2nd pathology review from any other place. Johns Hopkins is arguably the worlds leader in this.
Quite a few inspire members- including Rons48 - found this out by doing exactly the right things. It’s an excellent story:
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/go-to-a-center-of-excellence-before-making-prostate-cancer-decisions/
Another member posted this past week that he was downgraded from GL7 to GL6.
Newly approved GA-PSMA-PET scans are reported to be a GAME CHANGER for those of us diagnosed with Prostate Cancer. We can now better determine if the PCa is localized or has already spread. UCLA, UCSF, and MSKCC appear to offer wider availability to men that have not yet had treatment. The Veterans Administration in California is also reported to have more open guidelines (for qualified Veterans). Other institutions appear to limit GA-PSMA-PET to post-treatment men.
Another thing that I learned is that the Center(s) of Excellence teaching Surgeons (Klotz University of Toronto, Eggener University of Chicgo, Pavlovich Johns Hopkins, others) and Interventional Teaching Radiologists (Raman - UCLA) are telling us that men with Gleason 7 can be treated with Ultrasound and other modalities rather than Surgery/Radiation/Radiation+Chemical Castration. It would be foolish to ignore this very powerful message from the teaching leaders at the some of the best and major Prostate Cancer managment institutions in the world.
Below are links to Centers of Excellence that have experience with this new and less invasive technology.
University of Toronto: Next Generation Energy Based Targeted Therapies TULSA Ultrasound Ablation
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/university-of-toronto-next-generation-of-energy-based-targeted-therapies/
UCLA: TULSA Ultrasound Ablation of Prostate Cancer: Major Paradigm Shift
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/ucla-professor-steven-raman-lecture-mri-tulsa-pro-major-paradigm-shift/
Johns Hopkins: TULSA Ultrasound Ablation of Prostate Cancer
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/johns-hopkins-re-tulsa-pro-tact-trial-results-prostate-ablation-3-4-7s/
Indiana University: TULSA Ultrasound Ablation of Prostate Cancer
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/indiana-university-school-of-medicine-tulsa-pro-prostate-ablation/
Radboud University: TULSA Ultrasound Ablation of Prostate Cancer
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/radboud-university-transurethral-ultrasound-ablation-tulsa-pca-3-4-7/
University of Chicago: MR Guided Therapies
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/university-of-chicago-benefits-of-mr-guided-pca-therapies/
University of Heidelberg: TULSA and HIFU Ultrasound Therapies
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/heidelberg-university-hifu-vs-tulsa-prostaste-cancer-ablation-differences/
Beaumont Health
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/gannett-news-tulsa-pro-ultrasound-treatment-of-prostate-cancer/
Vanderbilt University
http://news.vumc.org/2016/09/22/new-prostate-cancer-therapy-investigated-at-vumc/
University of Virginia: Curing Cancer with Ultrasound
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/ted-talk-university-of-virginia-curing-cancer-with-sound/
University of Texas: Prostate Cancer TULSA Ultrasound Ablation
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/university-of-texas-tulsa-pro-prostate-cancer-ablation/
RSNA- UCLA MRI Guided Ultrasound Destroys Prostate Cancer
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/mri-guided-ultrasound-treatment-destroys-prostate-cancer-ucla-raman-rsna/
University in Finland
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/turku-university-finland-tulsa-pro-pca-ablation-for-3-3-6-and-3-4-7/
TULSA-PRO Availability in the USA/Insurance Re-imbursment
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/tulsa-pro-availability-in-the-usa-insurance-re-imbursement-status/
UCLA- Ultrasound to Attack Prostate Cancer with Curative Intent
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/ucla-video-s-ultrasound-to-attack-prostate-cancer-with-curative-intent/
HIFU Medium Term Oncological Outcomes
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/hifu-medium-term-oncological-outcomes/
UVA- Ultrasound Revolution
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/uva-surgeon-neal-f-kassell-ultrasound-is-a-revolution-not-an-evolution/
Grand Rounds - Sunny Brook-Lecture by Professor Klotz June 2020
York, PA Hospital offers TULSA-Pro
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/york-hospital-tulsa-pro-ultrasound-ablation-of-prostate-cancer/
Mayo Clinic offers Tulsa-Pro
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/mayo-clinic-offers-tulsa-ultrasound-treatment-for-men-with-prostate-cancer/
University of Texas offers TULSA-PRO Treatment in Dallas Texas
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/tulsa-pro-available-at-university-of-texas-utsw-in-dallas/
Yale University offers TULSA-PRO
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/yale-university-tulsa-pro-mri-guided-destruction-of-prostate-cancer/
September 2020 PCRI Casual Interview with Professor Klotz about HIFU and TULSA-PRO
October 2020 PCRI Casual Interview with Professor Klotz about AS, Genetic Assays, HIFU, and TULSA. (also that University of Toronto will soon offer TULSA-PRO). Skip to time stamp ~26:00 to miss the initial banter.
Interesting abstracts from the PCRI interview (Mark Moyad MD- University of Michigan interviews Professor Klotz-University of Toronto)
….so the it's the next generation of focal therapy (beyond) HIFU or cryosurgery, and the appeal of it is that it's very precise…..and it's also….quite automated… state of the art…
….the appealing things about this whole area ….is you have good salvage options … you can give radiation you can operate you can re-treat without the same risks that you do with salvage treatment after radiation…..radiation impairs the healing process so operating on a patient after radiation is very fraught….. a patient that doesn't heal (caused by radiation therapy) is basically a surgical disaster, so it (TULSA-PRO) gives you some options....
…the strength of this (TULSA) technique is the precision like you really see exactly what you've done… with your goal is to heat the tissue you can tell exactly what temperature every part of that prostate's been heated to you get a cold spot it's real you have to go back and treat that you don't have that with the other technologies….
…. I think for sure that (TULSA has) an advantage (because) you're not restricted at all by location….
....so the appealing thing about TULSA is that it it's the probe is in the middle of the prostate right so there's really no restriction in terms of the area you can reach or of volume.
TULSA-PRO for treatment of BPH and LUTS (Turku Univ/University of Toronto)
https://www.inspire.com/groups/us-too-prostate-cancer/discussion/relief-of-lower-urinary-tract-symptoms-after-mri-guided-tulsa/
UCLA
"There are two very unique things about this system....First, you can control with much more finesse where you're going to treat, preserving continence and sexual function. Second, you can do this for both diffuse and localized prostate cancer and benign diseases, including benign hyperplasia."
“TULSA also has the benefit of allowing further treatment if needed... If it fails, then the procedure can be repeated, and more aggressive invasive approaches like surgery and radiation therapy can still be used. Alternatively, TULSA may enable noninvasive treatment for localized radiation failure.-Dr. Steven Raman -Professor of Radiology and Urology-UCLA-RSNA Press Release-December 02, 2019
TACT ^^Authors:
Conclusions: With two-year follow-up, the TACT pivotal study of MRI-guided transurethral ultrasound ablation (TULSA) in men with localized prostate cancer showed effective disease control in most patients with low toxicity and stable quality of life. Experience with post-TULSA salvage prostatectomy in 3 patients suggests that it is feasible and safe.
^^Klotz L.H.1, Chin J.2, Hatiboglu G.3, Koch M.4, Penson D.5, Pavlovich C.6, Raman S.7, Oto A.8, Fütterer J.9, Relle J.10, Lotan Y.11, Heidenreich A.12, Serrallach M.13, Haider M.14, Bonekamp D.15, Tirkes T.16, Arora S.17, Pantuck A.18, Zagaja G.19, Sedelaar M.20, Macura K.21, Costa D.22, Persigehl T.23, Eggener S.19
1Sunnybrook Health Sciences Center, Dept. of Urology, Toronto, Canada, 2London Health Sciences Center, Dept. of Urology, London, Canada, 3Heidelberg University Hospital, Dept. of Urology, Heidelberg, Germany, 4Indiana University, Dept. of Urology, Indianapolis, United States of America, 5Vanderbilt University, Dept. of Urology, Nashville, United States of America, 6Johns Hopkins University, Dept. of Urology, Baltimore, United States of America, 7University of California, Dept. of Radiology, Los Angeles, United States of America, 8University of Chicago, Dept. of Radiology, Chicago, United States of America, 9Radboud UMC, Dept. of Radiology, Nijmegen, The Netherlands, 10William Beaumont Health System, Dept. of Urology, Troy, United States of America, 11University of Texas, Southwestern, Dept. of Urology, Dallas, United States of America, 12Cologne University Hospital, Dept. of Urology, Cologne, Germany, 13Hospital Universitari de Bellvitge, Dept. of Urology, Barcelona, Spain, 14Mount Sinai Hospital, Dept. of Radiology, Toronto, Canada, 15German Cancer Research Center (DKFZ), Dept. of Radiology, Heidelberg, Germany, 16Indiana University, Dept. of Radiology, Indianapolis, United States of America, 17Vanderbilt University, Dept. of Radiology, Nashville, United States of America, 18University of California, Dept. of Urology, Los Angeles, United States of America, 19University of Chicago, Dept. of Urology, Chicago, United States of America, 20Radboud UMC, Dept. of Urology, Nijmegen, The Netherlands, 21Johns Hopkins University, Dept. of Radiology, Baltimore, United States of America, 22University of Texas, Southwestern, Dept. of Radiology, Dallas, United States of America, 23Cologne University Hospital, Dept. of Radiology, Cologne, Germany
Pivotal trial of MRI-guided transurethral ultrasound ablation in men with localized prostate cancer: Two-year follow-up- Eur Urol Open Sci 2020;19(Suppl 2):e1338
Professor Epstein (Johns Hopkins) discusses in his lecture at MSKCC (time stamp ~26:00 in the link below) what pathologists should look for following Ultrasound treatment- he notes that if cancer is still apparent "...they typically go back and re-treat those areas...".
