A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 7 of 7

Thread: Cleveland Clinic Recommendations Please?

  1. #1
    Regular User
    Join Date
    Apr 2019
    Posts
    20

    Cleveland Clinic Recommendations Please?

    Trying to make the most out of our initial visit next month! I think the plan is to line up multiple specialists, and I would greatly appreciate the input of anyone who has been to CC.

    I think we'd like to meet with:

    1) urological oncologist
    2) surgeon
    3) focal therapy specialist
    4) sex medicine specialist

    We also have an appointment at the local proton therapy center next week for a consultation, and are considering a consult with another highly recommended radiation oncologist.

    Any advice/input would be greatly appreciated!
    Wife Posting, Husband D.O.B. 1975
    2/2018 - routine physical PSA 15
    3/2018 - PSA 13
    4/2018 - PSA down to 11.6, free PSA done, 18%
    6/2018 - PSA 10, free PSA 20%
    7/2018 - mp- MRI done, prostate volume =22cc, report said signs of inflammation consistent with prostititis
    11/2018 - PSA 14, free PSA down to 11%,
    3/2019 - PSA 12, free PSA 17%, 2nd opinion on MRI = PI RADs 3 lesion
    4/2019 - Cognitive Fusion Biopsy
    5/12 cores positive
    4 Gleason 3+3
    1 Gleason 3+4 (Where PIRADs 3 lesion IDd)
    RAM: G6, 50%
    RML & TZ: G7, G3=60%, Gleason 4 =10%
    RML: G6, less than 5%
    RBM and TZ: G6, 30%
    RBL: G6, 5%

    RRP scheduled for July 2019 (first available date at CC)

  2. #2
    Could you kindly add your biopsy results to your signature? If you reach the character limit, you can shorten or omit some of the descriptive explanations. Once you have a positive PCa biopsy/diagnosis, the imaging and some history usually becomes less important. In addition, we're always adding post-op PSAs and therefore continually having to shorten

    Thanks,

    Djin
    Last edited by DjinTonic; 04-13-2019 at 05:25 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) path. neg. for cancer; then 6-mo. checkups
    6-06-17 DRE: nodule R and PSA rise, on finasteride: 3.6→4.3
    6-28-17 Biopsy #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 5% RLM
    Bone scan, CTs, X-rays: negative
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 bilat. acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5 x 5 x 4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%; 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 weeks) PSA <0.1
    LabCorp uPSA (Roche ECLIA):
    11-28-17 (3 mo. ) 0.010
    02-26-18 (6 mo. ) 0.009
    05-30-18 (9 mo. ) 0.007
    08-27-18 (1 year) 0.018
    09-26-18 (13 mo) 0.013 (checking rise)
    11-26-18 (15 mo) 0.012
    02-25-19 (18 mo) 0.015
    05-22-19 (21 mo) 0.015

  3. #3
    Regular User
    Join Date
    Apr 2019
    Posts
    20
    Updated! I think I did it right...
    Last edited by AceVA; 04-13-2019 at 05:10 PM. Reason: Trying again on signature....
    Wife Posting, Husband D.O.B. 1975
    2/2018 - routine physical PSA 15
    3/2018 - PSA 13
    4/2018 - PSA down to 11.6, free PSA done, 18%
    6/2018 - PSA 10, free PSA 20%
    7/2018 - mp- MRI done, prostate volume =22cc, report said signs of inflammation consistent with prostititis
    11/2018 - PSA 14, free PSA down to 11%,
    3/2019 - PSA 12, free PSA 17%, 2nd opinion on MRI = PI RADs 3 lesion
    4/2019 - Cognitive Fusion Biopsy
    5/12 cores positive
    4 Gleason 3+3
    1 Gleason 3+4 (Where PIRADs 3 lesion IDd)
    RAM: G6, 50%
    RML & TZ: G7, G3=60%, Gleason 4 =10%
    RML: G6, less than 5%
    RBM and TZ: G6, 30%
    RBL: G6, 5%

    RRP scheduled for July 2019 (first available date at CC)

  4. #4
    I personally have reservations about focal therapy, but it has its place (e.g., a single G7 index lesion). If your docs think you are a good candidate, before choosing it, I suggest a genomics test on your RP tissue to ensure the cancer was low-risk for metastases. Another lesion(s) of 7 or greater could arise after treatment and time can elapse before it is diagnosed.

    There are studies on focal therapies in Topic (J) in the Subforum (near the top of the main page).
    Last edited by DjinTonic; 04-14-2019 at 08:17 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) path. neg. for cancer; then 6-mo. checkups
    6-06-17 DRE: nodule R and PSA rise, on finasteride: 3.6→4.3
    6-28-17 Biopsy #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 5% RLM
    Bone scan, CTs, X-rays: negative
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 bilat. acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5 x 5 x 4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%; 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 weeks) PSA <0.1
    LabCorp uPSA (Roche ECLIA):
    11-28-17 (3 mo. ) 0.010
    02-26-18 (6 mo. ) 0.009
    05-30-18 (9 mo. ) 0.007
    08-27-18 (1 year) 0.018
    09-26-18 (13 mo) 0.013 (checking rise)
    11-26-18 (15 mo) 0.012
    02-25-19 (18 mo) 0.015
    05-22-19 (21 mo) 0.015

  5. #5
    Senior User
    Join Date
    Jan 2019
    Posts
    331
    Quote Originally Posted by AceVA View Post
    Trying to make the most out of our initial visit next month! I think the plan is to line up multiple specialists, and I would greatly appreciate the input of anyone who has been to CC.

    I think we'd like to meet with:

    1) urological oncologist
    2) surgeon
    3) focal therapy specialist
    4) sex medicine specialist

    We also have an appointment at the local proton therapy center next week for a consultation, and are considering a consult with another highly recommended radiation oncologist.

    Any advice/input would be greatly appreciated!



    These people will help you https://my.clevelandclinic.org/ccf/m...edConNat06.pdf

    Also check your Private messages I let you a contact number if I can assist you.
    Last edited by Duck2; 04-13-2019 at 11:52 PM.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk. 38% risk 5 year metastasis.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT started 6/3/2019

  6. #6
    Quote Originally Posted by AceVA View Post
    I think we'd like to meet with:

    1) urological oncologist
    2) surgeon
    3) focal therapy specialist
    4) sex medicine specialist
    Focal therapy for prostate cancer isn't really that common or accepted. The reason why is that most usually, Prostate Cancer is usually manifested with numerous tumors, not just one or a few. Current imaging technology really doesn't allow that close of a look to see if the treatment got it all.

    In a few years, that is likely to change, as the science advances, just not yet.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3

  7. #7
    AceVA, Since you mentioned focal therapy, this is the latest news on a new product.

    Dr. Pavlovich of Johns Hopkins is a highly respected DaVinci surgeon. His enthusiasm for this treatment is noteworthy.

    Regarding focal therapy, it is somewhat predicated on the index lesion theory. That is, you destroy the most serious lesion, and the others are Gleason 6, and not dangerous. This is a disputed theory, but the argument is that the treatment has few side effects and can be repeated if necessary.

    https://globenewswire.com/news-relea...te-Cancer.html
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA 4.4, fPSA 24, PHI 32
    Hopefully, I can remain untreated. So far, so good.

 

Similar Threads

  1. Cleveland Clinic Online Second Opinion Service
    By Mabaz in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 0
    Last Post: 10-07-2017, 02:46 AM
  2. Replies: 1
    Last Post: 01-30-2014, 01:47 AM
  3. Cleveland Clinic
    By Joe Bama in forum Stomach and Esophageal Cancer Forum
    Replies: 5
    Last Post: 07-18-2008, 02:51 PM
  4. Cost of PET scans at the Mayo Clinic?
    By riesesdad in forum Breast Cancer Forum
    Replies: 1
    Last Post: 10-19-2004, 11:24 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •