My Update since HIFU treatment August 2024

NewPCA_GatheringInfo
NewPCA_GatheringInfo Member Posts: 7
in Prostate Cancer #1

Last year, I met with numerous specialists to explore all treatment options for my prostate cancer diagnosis. I consulted with experts in radical prostatectomy, radiation, TULSA, and HIFU, and I wanted to share a brief update on how I navigated these decisions and where I am today.

🧑‍⚕️ Consultation Highlights

  • Dr. Christian Pavlovich – Johns Hopkins
    • Recommended radical prostatectomy
    • Did not support HIFU, citing surgery or radiation as the gold standard
    • If I pursued HIFU, he preferred Dr. Alvin George over Dr. Scionti due to insurance network coverage
  • Dr. Kevin Choe – Inova Radiation Oncology
    • Specializes in radiation but advised against it due to my age and concern over long-term side effects
  • Dr. Malhotra – Potomac Urology
    • Recommended radical prostatectomy or radiation
  • Dr. Jonathan Hwang – MedStar Washington Hospital Center
    • Recommended radical prostatectomy
  • Dr. Collins – MedStar Georgetown
    • Specializes in radiation but referred me to Dr. Hwang for surgery due to my younger age
  • Mayo Clinic – Dr. Pathak (TULSA)
    • I was declined for TULSA due to tumor location; however, I believe they may not have reviewed updated imaging that suggested otherwise. Dr Scionti also said I was better HIFU candidate than TULSA
  • Dr. Vladimir Ioffe – Greenbelt Radiation Oncology
    • Strongly advocated for radiation therapy, presenting options like brachytherapy and CyberKnife

✅ My Decision: HIFU with Dr. Stephen Scionti

After carefully weighing the pros and cons of all options, I chose High-Intensity Focused Ultrasound (HIFU) with Dr. Stephen Scionti, despite him being out of network. While Dr. Alvin George was in-network and also specializes in HIFU, I felt more confident with Dr. Scionti due to his deep experience, approachability, clear plan, and overwhelmingly positive patient reviews.

  • My procedure was completed in August 2024
  • It was in-and-out same day
  • I had a catheter for one week — initially a concern, but ultimately just a minor inconvenience
  • I returned to full activity the following week
  • Most importantly: I have had no side effects and full sexual functionality, which was a top concern in my treatment decision

📉 PSA Results Post-HIFU

  • 3 months post-op: 0.84 ng/mL
  • 6 months post-op: 0.64 ng/mL (nadir)
  • 9 months post-op: 0.86 ng/mL
  • These results are all well below the 4.0 ng/mL threshold, showing a strong response to treatment and no sign of recurrence at this time

🤖 Research Support

I also want to note that ChatGPT was a fantastic resource throughout this process — helping me research, clarify terminology, and prepare better questions for each specialist as well as this board.

Every person’s diagnosis is different, and there's no single "right" choice — but after seeking multiple opinions and weighing all outcomes and side effects, I’m extremely happy with my decision and my results so far.

Comments

  • Steve1961
    Steve1961 CSN Member Posts: 685
    #2

    at age 51 i would have it removed look up the gold standard for prostrate cancer and men expect to live more than 10 years. It is surgery you’re playing with fire. The best way to be cancer is to get it out of your body. I did radiation. I totally regret it. it came back. I didn’t think twice about salvage surgery. I am one year free and hopefully it’s gone for good. Good luck with your treatment.

  • Steve1961
    Steve1961 CSN Member Posts: 685
    #3

    mostbof those yreatments are for older men who cant do surgery.. I would ask them what the 10 year success rate is I bet you they won’t tell you because they have not studied it for 10 years. Tell you.

  • NewPCA_GatheringInfo
    NewPCA_GatheringInfo Member Posts: 7
    edited May 1 #4

    All the options are still on the table if anything changes so Ill just continue monitor but quality life now with no side effects is worth the risk for me. There is still a chance of reoccurrence even with removal.

  • centralPA
    centralPA CSN Member Posts: 409
    edited May 1 #5

    deleted, I’ll post in your other thread

  • Old Salt
    Old Salt CSN Member Posts: 1,627
    edited May 1 #6

    Interesting because HIFU is relatively new, at least on this forum.

    Are there any long-term data (preferably for 10 years).

    How many lesions were 'hit'?

    Hope to see further updates; hope they will carry good news.

  • swl1956
    swl1956 Member Posts: 230
    #7

    HIFU has been around over 30 years. Approved for use in the U.S. about 10 years ago.

  • NewPCA_GatheringInfo
    NewPCA_GatheringInfo Member Posts: 7
    #8

    I had one lesion/area on the right that showed the cancer cells from MRI and further confirmed by the PET scan.

    Advancements in imaging and energy focusing have significantly enhanced HIFU, allowing for sub-millimeter precision to ablate cancerous tissue while also creating a controlled margin of coagulative necrosis around the target zone to ensure local containment and reduce recurrence risk.

  • Old Salt
    Old Salt CSN Member Posts: 1,627
    #9

    My post was largely based on recommendations from the American Urological Association:

    Clinicians should inform patients with intermediate-risk prostate cancer considering whole gland or focal ablation that there are a lack of high-quality data comparing ablation outcomes to radiation therapy, surgery, and active surveillance. (Expert Opinion)

    However, I did come across a recent paper (2024) describing the results of a fairly large French study that compares outcomes from HIFU with prostatectomies for intermediate risk prostate cancer patients.

    Whole-gland or Subtotal High-intensity Focused Ultrasound Versus Radical Prostatectomy: The Prospective, Noninferiority, Nonrandomized HIFI Trial - European Urology

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