The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

prostrate cancer

12tugod
12tugod CSN Member Posts: 23 Member
edited August 2023 in Prostate Cancer #1

2021 I was diagnosed with a rising PSA 5.0. The DR right of the bat recommended a MRI which revealed suspicious legions then onward to biopsy. The biopsy noted an agressive legion Gleason 8 along with 2 other gleason 6 on left side. In addition, 3 other gleasons 6 on right side. . I chose the HIFU option on the left side. fast forward, after a 6 month follow up biopsy, the left side was clear but the right revealed 4 gleason 6s and 1 gleason 7 (3/4). The DR is recommending (1) prostrate removal, (2) radiation. I am choosing active surveillance. My research says the gleason 3/4

is a group 2 VS 4/3 is a group 3. I appreciate any responses or advice on this issue.

PS: HIFU is expensive as Heck. (So is my life and well being)

«13

Comments

  • lighterwood67
    lighterwood67 CSN Member Posts: 398 Member

    Just curious. Did you have any side effects from the HIFU treatment? And currently what is your PSA? I had a RP in March of 2018. Currently, my PSA is < .04ng/ml. I am continent. I am intimate with my wife. Best of luck on your journey.

  • centralPA
    centralPA CSN Member Posts: 448 Member

    Hi @12tugod sorry you find yourself here.

    Youre playing a risky game for sure. Some questions to help understand what’s going on.

    After your HIFU did you have another MRI? Doesn’t sound like it.

    On the right side, was the 3/4 found where the MRI had previously identified lesions? Was this biopsy a different sampling approach? More samples?

    What percentage of the 3/4 was graded 4?

    How did the HIFU go? Catheter in for a week?

  • Josephg
    Josephg CSN Member Posts: 586 Member

    I had 3+4 results from my biopsy. I had a prostatectomy and thought that I was finished with PCa. However, I had a 4+3 after my prostate was removed and analyzed, and a still detectable PSA. I had six months of hormone therapy and IMRT radiation to the prostate bed, and again thought that I was finished with PCa.

    Since then, I had one recurrence a decade later and SRBT radiation therapy, in my left inferior pubis ramus (local metastasis), and I've just come off a two year hormone therapy cocktail. I'm hoping to remain cancer undetectable for as long as possible.

    No two prostate cancer cases are exactly alike, but I strongly recommend that you get at least one additional opinion from a "Medical Oncologist", before you make your final decision regarding next steps (or no next steps).

    Yes, long life and well being are important, for sure, but I suggest that you not ignore the presence of 3+4 PCa.

  • 12tugod
    12tugod CSN Member Posts: 23 Member

    No side effects from HIFU. Only the left side revealed gleason 8. Left side is clear of cancer. I should have had full Prostrate HIFU. Dang 1 week with cath was the worse for me. First time in my life with cath.

  • 12tugod
    12tugod CSN Member Posts: 23 Member

    The DR says 6 months after HIFU, it is protocal to get a MRI and a biopsy. The MRI did not reveal any warnings (strange), but the biopsy did. By the way, today I had another PSA. the result went up from 1.970 (11/2022) to 3.570 (04/2023) Got me thinking again. The 4 was 10%. Cath was terrible, never experienced that before.

  • centralPA
    centralPA CSN Member Posts: 448 Member

    That last PSA jump is a fairly quick doubling rate, unfortunately.

    Im assuming your G8 was 4+4 and not 5+3, correct?

    I would at a minimum want another PSA in 3 months.

    My gut feeling is you will have to come off AS in the not too far future. Maybe immediately.

  • lighterwood67
    lighterwood67 CSN Member Posts: 398 Member

    Still curious. What is your current PSA? And by the way, if you think the catheter was bad, you better hope you do not get a cystoscopy. For me, that was one of the most memorable moments in my life.

  • 12tugod
    12tugod CSN Member Posts: 23 Member

    HIFU ablated GS 8 (5+3) Target left 40%

    GS 8 (3+5) LLM 50%

    GS 6 LLA 15%, Target right 5%.

    Left side all clear.


    I am dealing with the right side now. Tough.

    My next follow-up with DR is in August 2023.


    What I am seeing from others is the side affects after what other methods they choose. Now I feel so normal other than mental worrying.

  • Clevelandguy
    Clevelandguy CSN Member Posts: 1,403 Member

    Hi,

    I’m curious, why not HIFU on the right side. Seems like it worked for you on the left side.

    Dave 3+4

  • 12tugod
    12tugod CSN Member Posts: 23 Member

    According to the DR at the time the legions on the right side was deemed safe zone meaning gleason 3/3 not sirous. But you have a good point that I need to address with him on next visit.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,831 Member
    edited April 2023 #12

    12tugod,

    I am stunned that any oncologist would put you on A/S, with your clinical history. None of our resident lay experts on A/S have chimed in yet (whom I noticed), but I doubt you meet Best Practices A/S qualifications. I am the first to admit that I am not well versed in A/S, but I believe that JUST a Gleason of 8 would disqualify in most protocols. The fact that your more recent biopsy showed only a Gleason of 6 does not by any means prove that no Gleason 8 remains.

  • Rob.Ski
    Rob.Ski CSN Member Posts: 204 Member

    If HIFU is very expensive, would it have cost the same to do the entire prostate vs. half? If you need a second round for the other side, are you paying again? Haven't seen too many that have had this treatment.

    Biopsies tell you that you do have cancer, not 100% that you don't. The needle can miss the cancer, it's only a small sampling of the gland. After a surgery, the entire prostate can be evaluated. Not uncommon for the pathology to change.

    What did you PSA do after HIFU?

  • ASAdvocate
    ASAdvocate CSN Member Posts: 195 Member

    Yes, technically, you may be within the AUA guidelines to do AS with only one core having ten percent of Gleason 4 pattern. But, the number of positive cores would sway me to agree with the others that you are taking some risk, and may not be on AS for long.

  • 12tugod
    12tugod CSN Member Posts: 23 Member

    HIFU Feb 1 2022/ PSA's:

    05/06/2022 - 2.100 08/09/2022 - 1.580 11/08/2022 - 1.970 4/23/2023 3.570

  • 12tugod
    12tugod CSN Member Posts: 23 Member
  • Old Salt
    Old Salt CSN Member Posts: 1,741 Member

    Advice from the American Urological Association:

    1. 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)

    Clinically Localized Prostate Cancer: AUA/ASTRO Guideline (2022) - American Urological Association (auanet.org)

  • 12tugod
    12tugod CSN Member Posts: 23 Member

    Thanks for additional info. Focal ablation (HIFU) worked for me on the left side without all to completions that others are dealing with.

  • 12tugod
    12tugod CSN Member Posts: 23 Member
  • 12tugod
    12tugod CSN Member Posts: 23 Member

    I had that following MRI results on Dec 9 2022:

    1. No lesions are seen suspicious for clinically significant prostate cancer

    2. Post ablation changes in the left prostate gland with left shift of the prostatic urethra.


    PI-RADS CLASSIFICATION (Probability of a clinically significant cancer)

    1 - Very low (highly unlikely)

    2 - Low (unlikely)

    3 - Indeterminate (equivocal)

    4 - High (likely)

    5 - Very high (highly likely)

    Narrative

    PROCEDURE: Enhanced , Unenhanced MRI Pelvis


    CLINICAL INDICATION: prostate cancer


    TECHNIQUE: Using a body phased array coil small field-of-view imaging of the prostate was performed using the following sequences; [axial T1-weighted, axial T2-weighted, sagittal T2-weighted, coronal T2-weighted, diffusion-weighted]. Axial T1-weighted

    images [with fat suppression] through the prostate were obtained before and [dynamically] after the intravenous administration of IV contrast.

    Using a large field-of-view, the entire pelvis to the level of the aortic bifurcation was imaged with the following sequences fat suppressed T2-weighted, Axial T1-weighted images ]

    Postprocessing images with DynaCAD software were obtained and submitted for analysis.


    COMPARISON: Prostate MRI from 11/12/2021.


    PSA level: 1.4 ng/ mL in 8/2022.


    FINDINGS:

    Prostate Size: 3.5 x 2.4 x 4.1 cm.

    Volume: 17.9

    PSA density 0.07 ng/mL/cm3



    TRANSITION ZONE:

    * T2 images demonstrate heterogeneous multinodular appearance, without evidence of suspicious nodules.

    Post ablation changes in the transition zone with left shift of the prostatic urethra.




    PERIPHERAL ZONE :

    No focal lesion of low signal intensity in T2 weighted images, restricted diffusion or focal enhancement in the peripheral zone


    Post ablation changes in the left peripheral zone.


    Extraprostatic extension N/A


    Seminal vesicles: Normal serpiginous appearance without thickening of the walls, abnormal restriction or enhancement


    Bladder: underdistended bladder, limiting the evaluation of its walls.


    Lymphadenopathy: No significant lymphadenopathy by size criteria.


    Bones: No suspicious osseous lesions.


    Other: None

    TRUSS BIOPSY on FEB 13, 2023 finding multiple 3/3's and one 3/4.


    I am confused. help me with advice. How can this be?

  • 12tugod
    12tugod CSN Member Posts: 23 Member