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Thread: My RALP Journey

  1. #31
    Quote Originally Posted by OldTiredSailor View Post
    Similar story transpired late in August for me!

    I've been a lifetime hard core exercise freak with a heart that runs very fast and somewhat irregularly. From age 40 (at my wife's insistence) to age 63 I was under the care of a cardiologist who was also a high level marathon runner. I had three serious episodes of heart arrhythmia, tachycardia, and very high blood pressure. Cardiologist did many studies of my heart using various state of the art technology. After the third episode, each of which resolves itself after 8 to 10 hours and a few drugs, runner/cardiologist told me to ignore my heart problems, let them resolve naturally, and keep doing the hard work to maintain my cardiovascular system. His final recommendation was "You will die of something, probably from one of your stupid stunts, but it will not be your heart that kills you!"

    I moved to San Diego where I had another serious episode (7-years after prior problem) while doing some hard uphill, mountain running. After many very expensive tests and several overnight hospital stays, the San Diego cardiologist (70+ years old and Head of the department at UCSD) told me the same thing - "Your heart runs fast and gets confused in it's firing pattern - it will resolve and it will not harm you - keep on doing the hard cardiovascular work"

    Five years later and now in SW Florida I have a 4-day episode of irregular heart beats (NOT atrial fibrillation) and momentarily pass out when standing quickly. However, during the episodes I do two long hard bicycle rides with no problems. Eventually I do pass out in the kitchen and wife makes me go to ER. The ER doc believes my description of the prior history, gives me an IV drug to stabilize the heart and sends me home 65-minutes later but does schedule me with a new, young, just out of a superb cardiology resident program, newly board certified,...etc.

    New heart doc with all the latest skills, technology, and training orders a radionuclide stress test.

    Technicians at test freak out while looking at my EKG while I am running on 4% grade with heartrate at 165. I am comfortable and under no stress and tell them it is normal and I can do it all day long. They stop the test and order me to see cardiologist ASAP.

    Young cardiologist tells me I have a heart block, coronary artery disease and need to be on statins and metoporol the rest of my life. (My triglicerides are perfect and always have been). He also orders angiogram and tells me I might need a stent. However, he forgot to tell me what I needed to do and I did not know about the orders until my PCP, at my annual physical 9-months later, asked me why I never followed up with the cardiologist recommendations.

    At that time I am playing 2-hours a day of very hard pickleball in 95° heat and riding my bicycle 6-hours a week with no problems. I go in to cardiologist office for a follow up and see the senior partner rather than the young guy.

    Senior doc looks at everything, talks to me for a while and finally says "You are the kind of old life-time jock with a well trained heart who I never put on a stress test. You will most likely show positive and potentially dangerous EKG patterns but we know that if you've been hyperactive for most of your life those apparently dangerous patterns are artifacts and should be ignored. I want you to go out there, keep doing what your doing and forget about your heart problems - 'cause you don't have any!"

    He further stressed that I should not allow docs to do an EKG unless I am displaying overt symptoms such as chest pain, tachycardia, or shortness of breath.

    His final, unsolicited comment was: "You will die of something but it will not be your heart."

    In the last 20-years I've had four major health crises, all of which were diagnosed/mis-diagnosed with high-tech imaging and measurements. In every case there was a significant disagreement between specialist physicians about interpretation and treatment. In three cases - the initial diagnosis and treatment was wrong and potentially dangerous.

    I love technology but it's proper use is so dependent on the training, skill, and experience, (especially experience!) of the user.

    Sorry for the long dissertation - the further I go down the post-RP / rising µPSA rabbit hole - the more I realize technology will determine my path for my remaining years.
    Isn't it crazy? Was sure my problem would be heart. The lungs already checked out fine, no asthma or other craziness. What were your symptoms any breathing issues?

    Were now down--after the heart scare--to trying extra GERD medications as my gi doc thinks it could be due to temporary reflux.

    My symptoms started in 2017 when I was walking about 6 miles a day, 2 in the morning and 4 at night. With ease.

    Suddenly one evening--code orange smog day--i was having trouble breathing. It was a odd sensation of trying to inhale more air into already full lungs. Mechanically, they worked fine but the sensation was of air drowning. The really odd thing is that one week on say a Tuesday I'll try my 4 mile walk and do it with ease. Two days later I can't get 100 yards down the street. It is bizarre.

    The GERD medication seems to help but I haven't been walking much due to work responsibilities. So I'm not sure if that solved the problem, it has helped but not 100% right just yet.

    Yes Another, I'm working on losing weight. I'm down 30 pounds almost.

  2. #32
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    Sorry for the late follow up but I received my pathology results this past week.

    Negative for Lymph Node Carcinoma
    Prostate Gleason Score 3 + 4 = 7 in dominant tumor involving bilateral posterior mid
    Prostate Gleason Score 3 + 4 = 7 in secondary tumor involving right posterior mid towards base
    Percentage of Gleason pattern 4 = 10%
    Carcinoma organ confined
    Carcinoma involves approximately 2% of the gland.
    Negative for lymphovascular invastion
    Unremarkable bilateral seminal vesicles

    So based on this I believe this was probably among the most positive results I could have received. I have to get another PSA test in 3 months but from all indications the cancer was fully contained within the prostate. Nerve bundles were spared.

    As far as my recovery is doing. I got the catheter removed on 9/11. Urinating is slightly uncomfortable getting started but is ok after that. Difficulty getting stream to stop and dribbling towards end. I suffered from weak stream before and was hoping the surgery would alleviate this since I had an enlarged prostate. My stream pressure is about the same as before. My incisions are slowly improving as well as the soreness. Still pretty bruised in the groin area. From an ED standpoint, difficulty achieving erection without manual stimulation at this time but taking V daily to try to improve. I know its still very early on so I believe my state at this time is pretty promising.
    Age 50
    Fort Lauderdale, FL
    9/17/14 PSA 3.2
    10/1/14 PSA 2.0
    7/16/15 PSA 2.8
    1/13/16 PSA 2.8
    4/27/16 PSA 2.7
    ?/?/17 PSA 3.9
    6/19/18 PSA 5.7
    7/3/19 PSA 5.4
    7/24/18 Prostate Biopsy results, 2 cores Gleason 6
    7/19/19 Prostate Biopsy results 4 cores Gleason 6, 2 cores Gleason 9
    8/6/19 Bone Scan and CT Scan - Negative for any ureteral or bladder calculus, lymph node and seminal vesicles appear normal, moderate prostate enlargement
    9/5/19 RALP at U of Miami hospital performed by Dr. Mark Gonzalgo
    Pathology Results: Carcinoma organ confined affecting 2% of the gland. Gleason Score 7 (3+4)

  3. #33
    Hi jerryrs. Give your healing and recovery plenty of time. In my case, I saw progress daily for few weeks, then weekly for a few months, and finally monthly. Your mileage may vary. When I brought up taking 20 mg sildenafil daily to aid ED recovery, my uro said that while there is no evidence it works, it won't do any harm and might help (I took it for a few weeks also).

    Great path report. Only 2% prostate involvement is excellent. Before you put it out of your mind, I would confirm the following:

    Since "prostate confined" was mentioned, it also means there was no extraptostatic extension. Do you also see the corresponding pathological staging of "pT2" in the report?

    Were "margins" mentioned in the report?

    Was there an overall G (3+4) evaluation in addition to that score for each of two individual lesion? You had two G9 (4+5) biopsy cores. Was "tertiary 5" mentioned in the path report?

    Make sure you get a copy of the original, full path report if you were given just a summary. The original report will be several pages long.

    Did your doc say when your first PSA test will be?

    All the best,

    Djin
    Last edited by DjinTonic; 09-16-2019 at 12:45 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 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 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  4. #34
    Hi jerryrs! I agree that this appears to be a "good" Path Report. If the Path Report unequivocally downgrades the clinical "R Base, Gleason 4+5=9, 60% involved 7mm in length" to G (3+4), then the news is very good!

    Glad that your recovery is normal and that you at least had 1 thing good to celebrate on 9/11.

    Any thoughts or discussions with your URO Surgeon about genomic testing of a surgical sample?

    Good luck moving forward!

    Keep us updated.

    MF

  5. #35
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    The urine stream should improve with time as the swelling subsides and the urethra scarring thins.

    Was "organ confined" actually mentioned in the report or mentioned by the doctor? It is my experience a pathologist will report what they see: i.e. positive margins, EPE, etc. A "diagnosis" it is organ confined seems highly unlikely to be reported in a pathology report.

    Do you have a copy of the report itself?

    It is tempting to jump ahead, even for professionals wanting to celebrate "good news", and make declarations like "organ confined". My doctor said, "We got it all!" when he saw my report, but typically a pathology report does not make such a declaration. While this may be true and what you do know points to it being true it does not make it true. Only time will prove it.

    Being clear in the language is important. This is cancer.
    Last edited by Another; 09-16-2019 at 04:14 PM.

  6. #36
    Top User garyi's Avatar
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    Quote Originally Posted by Another View Post
    Do you have a copy of the report itself?

    It is tempting to jump ahead, even for professionals wanting to celebrate "good news", and make declarations like "organ confined". My doctor said, "We got it all!" While this may be true and what we do know points to it being true it does not make it true.

    Being clear in the language is important. This is cancer.
    Very true and critically important. It is very common for surgeons to 'self congratulate' their outstanding work immediately after surgery, and before the path report and other facts are in. It misleads too many patients, with a false sense of success.

    Call the Records Dept yourself to get a complete path report. In my experience, you'll do better taking it easy and logging every 4 days or so, rather than daily. As you heal, the abdominal binder should come in handy with going out, so don't toss it.

    Sounds like you're doing well, all things considered.
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19
    We'll see....what is not known dwarfs what is thought to be fact

  7. #37
    A G4+5 downgraded to a 3+4? That certainly is good news, but I suspect biopsy, pathology or both as suspect for error. I would get a second opinion on the path report.
    YOB 1957

    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.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    T3aNO, GS8, 21 mm 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.

    PSA 3/27/19 03 (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  8. #38
    As I mentioned, if the RP pathologist found no G5, then the biopsy slides should also be reviewed. Otherwise the full path report may have mentioned "tertiary 5".

    (In a study of >7600 specimens, Epstein found "... total of 18.5% of cases with biopsy GS 9–10 had RP with GS 3 + 4 or GS 4 + 3 with tertiary grade pattern 5")

    You also want to explicitly check that the margins were negative in the report. "Prostate confined" or pT2 does not exclude positive margins. These two issues are not addressed in your path summary above.

    Djin
    Last edited by DjinTonic; 09-16-2019 at 05:06 PM.

  9. #39
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    I have the full 6 page report.

    The report states:
    The carcinoma is organ confined
    The Carcinoma involves approximately 2% of the gland.
    Negative for lymphovascular invasion
    Surgical resection margins are negative for carcinoma
    Unremarkable bilateral seminal vesicles

    It also states Classification: pT2 N0 Mn/a.
    There is no tertiary lesion identified. It further states:

    No Gleason pattern 5 is present in the resection specimen. The original biopsy was re-reviewed and the grade was confirmed.

    Procedure: Radical Prostatectomy
    Grade Group and Gleason Score: Grade group 2 (Gleason Score 3 + 4 = 7)
    Percentage of Pattern 4: 10%
    Intraductal Carcinoma (IDC) : Not identified
    Extraprostatic Extension (EPE): Not identified
    Urinary Bladder neck invasion: Not identified
    Seminal Vesicle Invasion: Not identified
    Treatment Effect: No known presurgical therapy
    Lymphovascular Invasion: Not identified
    Margins: Uninvolved by invasive carcinoma
    Number of Lymph Nodes involved: 0
    Number of Lymph Nodes examined: 7
    Pathologic Stage Classification )pTNM)
    Primary Tumor (pT): pT2
    Regional Lymph Nodes (pN) : pN0

    I also questioned the downgrade from G9 to G7 but trying not to dwell on it because even with the G7 I would have probably had surgery but may have not rushed to have it quite this soon.
    Age 50
    Fort Lauderdale, FL
    9/17/14 PSA 3.2
    10/1/14 PSA 2.0
    7/16/15 PSA 2.8
    1/13/16 PSA 2.8
    4/27/16 PSA 2.7
    ?/?/17 PSA 3.9
    6/19/18 PSA 5.7
    7/3/19 PSA 5.4
    7/24/18 Prostate Biopsy results, 2 cores Gleason 6
    7/19/19 Prostate Biopsy results 4 cores Gleason 6, 2 cores Gleason 9
    8/6/19 Bone Scan and CT Scan - Negative for any ureteral or bladder calculus, lymph node and seminal vesicles appear normal, moderate prostate enlargement
    9/5/19 RALP at U of Miami hospital performed by Dr. Mark Gonzalgo
    Pathology Results: Carcinoma organ confined affecting 2% of the gland. Gleason Score 7 (3+4)

  10. #40
    That's very good news all around, Jerry! You got back a report that few expect, from a G9 (4+5) to a G7 (3+4). All adverse features are accounted for and they are all negative. You can file the path report away and just remember it was good news from top to bottom!

    Here's to your upcoming Club Zero membership!

    Djin

 

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