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Thread: Just got diagnosis

  1. #11
    RobLee, Just as a point of reference, I have read internet forum posts from patients reporting PSA's of 3000, 5000, up to 7200. And, these men were posting years after those tests. Didn't sound like their lives were always high quality, but they were surviving.

    Also, nobody has a definitive answer how high a prostatitis spike can go, but the highest I've read somebody reporting was 37, which later went down to 3. Just some info....
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014; PSA=3.9; FPSA=26; PHI=28. No biopsy necessary.

    A NOTE ON PSA: My readings have been erratic for over 10 years; typically being 3.5-4.2, but spiking to over 10 at times.
    These spikes are asymtomatic to me, and resolve themselves. A prostate biopsy can triple the PSA, which lasts for months.
    Last Free PSA was 26. I don't worry about PSA spikes anymore.

  2. #12
    Top User RobLee's Avatar
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    Quote Originally Posted by ASAdvocate View Post
    RobLee, Just as a point of reference, I have read internet forum posts from patients reporting PSA's of 3000, 5000, up to 7200. And, these men were posting years after those tests. Didn't sound like their lives were always high quality, but they were surviving.
    Thanks for the info. I thought I had seen numbers like that somewhere. PSA's in the hundreds seem high, thousands just inconceivable. Hence, 40 as moderate.

    Also, nobody has a definitive answer how high a prostatitis spike can go, but the highest I've read somebody reporting was 37, which later went down to 3. Just some info....
    Again, thanks. I had mentioned my "slightly elevated" PSA (of 20) in my reply in the Am I making the right choice thread. I know that yours has been elevated for some years, and that you had some bad experiences with needle biopsies (and I can sympathize with you on that). My experience made me less than anxious to repeat the procedure after the initial biopsy turned out to be negative, much to my disappointment... and ultimately allowed to the PCa spreading for an additional year. That being said, I do appreciate that elevated PSA alone is no reason to jump into surgery, and that each case must be evaluated individually.
    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct: 20, lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: one year Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 fractions RapidArc IMRT 8/14-10/6

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

  3. #13
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    Highlander,

    Thank you for getting my post in the right place, and for all you do for people like me. I really appreciate the members who responded to my initial post - makes me feel like I've been welcomed to the team.

    My PSA was, in fact, 40. That, combined with a Gleason of 8, has me very anxious for test results (bone scan, cat scan, X ray) next week. I really just want the damn thing out of my body, but suppose they remove that option if metastatic?

    I will listen to what my current neurosurgeon reports and recommends, and may ask for a second opinion at Memorial Sloan Kettering (MSK) satellite in NJ.

    Will keep you all posted and look forward to corresponding with all of you for many years in the future!

  4. #14
    Moderator Top User HighlanderCFH's Avatar
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    Sounds good, Mike, and thank you for the kind words.

    Yup, you're part of the team now & we're glad to have you with us (but not happy that you developed PC), so we can keep on helping each other.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Five annual post-op exams 2012 through 2016: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns blue.
    NOTE: ED caused by BPH, not the surgery.

  5. #15
    Keep us posted Mike when u get the results of the scans. Don't worry now about what might be, just take one day at a time. We will be here for u every step of the way. MM

  6. #16
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    Quote Originally Posted by MichiganMan16 View Post
    Keep us posted Mike when u get the results of the scans. Don't worry now about what might be, just take one day at a time. We will be here for u every step of the way. MM
    Good words of advice - have given it before in different circumstances. Not there yet myself, but will get there when the dust clears a bit. WILCO on reporting results of meeting with Urologist next week.

    Mike A

  7. #17
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    Mike-Welcome to our unfortunate club. I know its like a Tsunami hitting you when you get first diagnosed, but you have a really good chance of beating this thing.

    The urologist will most likely recommend surgery (cause that's what they do) depending on your age and weather they think you can handle surgery. if your going the surgery route you need to find the most experienced surgeon you can get ( at least 2000 surgeries) or the most experienced radiation oncologist your can get that specializes in prostate cancer. You really need to do your own homework here.

    Also, don't forget to read Dr. Walsh's book on prostate cancer.

    Good luck to you.
    dob: 5/28/1969
    PSA test 5.4 5/21/2015 PSA test 5.3 8/20/2015
    Biopsy 12/10/2015 Adenocarcinoma 4 cores positive, 25%, at left base, left mid, and right apex.
    Gleason grade 3+3=6 Staging T1C
    Multiparametric MRI 12/23/2015
    1.7 cm right apical tumor nodule with high grade imaging features and possible extracapsular extension.
    1.1 cm left midlateral prostate tumor nodule with high grade imaging features. Calculated prostate volume of 24 ml
    DaVinci nerve sparing surgery at Penn Presbyterian(Phila, PA) by Dr. David Lee 2/22/2016
    80% nerves spared on left, 60% nerves spared on right.
    Prostatic extension, 4 lymph nodes, perineural invasion, and seminal vesicles reported negative.
    Small positive focal margin reported at the left posterior prostate gland.
    Gleason score upgraded to 3+4=7 Staging p2Tc NO Mx, Prostate size Weight: 34.0 g Size: 4.2x4.0x3.5 cm
    Catheter removed 2/29/2016. Erections around 95% . Using 2 briefs a day for a month. Just 1 pad per day now.

  8. #18
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    Good luck Mike A and best wishes for good scan results leading to more treatment options!

    As you are aware, the combination of G8 with PSA of 40 places you in a very high risk category. Go ahead and call MSK on Monday and make an appointment for a consultation. Whatever treatment option you pursue, be sure that the MD is a top PC expert.

    If surgery is an option, I would consider going to MSK to a URO surgeon who is doing 300+ RPs per year and who specializes in high risk cases. (vs the opposite way as stated in your 1st post)

    Fingers crossed for good scans!

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    March '12: Robotic RP: Left Positive Margins + EPEs. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3A pNO pMX pRO / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml uPSA remains stable: = 0.020 ng/ml "Mean (+/-) STD" = 0.002 at 60 Months Post Op: (15 uPSAs: Range 0.017 - 0.024) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 98%)
    ED = present

  9. #19
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    MF and others. Just had follow up visit with urologist following Bone scan, Cat scan (intravenous dye)), and Xray
    .

    In spite of high PSA (40) and Gleason 8, Results came back negative for any metastasis detected. Doctor said results indicate everything is contained in the capsule! Seminal vesicles symmetric, no positive lymph nodes. I read the reports myself because I was sure luck was not on my side. Only abnormality noted was enlarged prostate 5.2 x 5.5 . It would be an under statement to say I feel somewhat relieved and optimistic.

    I have decided to go forward with robotic surgery. Probably in 2-3 weeks depending on schedule. I have an appointment with the surgeon this Thursday. I'm in pretty good shape for a 67 year old - retired army - an on renewed fitness plan. Thanks to what I read in Dr. Walsh's book (great advice), I quite smoking 10 days ago after being a smoker for 50 years. I will keep in touch as I go through treatment and hope to benefit from your experiences.

    Mike A

  10. #20
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    Good reports! Start working on your kegels now.
    Born 1953 family w/PC-grandfather, brother
    BMI: 23.4
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69
    05-16-12 PSA 4.76
    12-11-12 PSA 5.20
    03-07-16 PSA 7.20, DRE-smooth, enlarged
    03-14-16 TRUS biopsy adenocarcinoma 1%-60% across 8 of 12 samples,G 3+3=6
    03-31-16 MRI pelvis
    05-04-16 DaVinci prostatectomy, nerve sparing, Surgeon Dr. Kent Adkins, recommend
    Final Path: weight 65g, Tumor volume 35%, +pT2c, lymph nodes, seminal vesicles, capsule, margin all negative, G 3+4=7
    Catheter out 12 days, bladder spasms for 3 days were harsh
    Incontinence at 6 mos is minimal no pad
    08-10-16 PSA 3 mos <0.02, Cialis 3x/wk & Viagra on occasion
    11-21-16 PSA 6 mos <0.02, Erections <50%, orgasms 100% & intense, Stopped Cialis & Viagra due to back/pelvis pain, start self-injection therapy for erections, 7ul Trimix
    12/31/16 Stopped Trimix injections with onset of Peyronie's
    06-01-17 PSA 1 yr <0.02

 

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