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    Old 01-26-2020, 01:58 PM   #1
    NJMike
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    "You Have Cancer"

    That was what my urologist told me on the phone last week just as I was finishing my lunch. I don't think I've ever experienced anything more disorienting than hearing those words. It was a complete and total shock. It felt so surreal and a wave of fear shook me to my core. Within 3 hours my wife and I were at the urologist's office. My diagnosis is Stage II Gleason 8 prostate cancer. After exploring treatment options we decided that robotic radical prostectomy is the option for us. We met with a couple of surgeons specializing in robotic prostate surgery and have a surgery date scheduled for early March. A bone scan this scheduled for this week.

    The initial shock has worn off a bit. I am taking one day at time. Now that I have a specific treatment strategy I am feeling a little bit better. Right now my hope is that there are no cancer cells in the margins or lymph nodes after radical prostectomy. If there are, then I will just have to cross that bridge when I get to it. The same goes for the post surgical incontinence and impotence. We'll deal with those issues as they arise.

    Obviously our immediate family knows about my diagnosis. My wife and I have a large social circle and I am hesitant to tell our friends. I don't want them thinking of me just yet as "Mike with cancer" rather than just "Mike". I will let them know probably a week or two before the surgery. So many issues to deal.

    Thank you for taking the time to read my post. Felt good just to write it.

     
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    Old 01-26-2020, 04:18 PM   #2
    Shellsb
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    Re: "You Have Cancer"

    Quote:
    Originally Posted by NJMike View Post
    That was what my urologist told me on the phone last week just as I was finishing my lunch. I don't think I've ever experienced anything more disorienting than hearing those words. It was a complete and total shock. It felt so surreal and a wave of fear shook me to my core. Within 3 hours my wife and I were at the urologist's office. My diagnosis is Stage II Gleason 8 prostate cancer. After exploring treatment options we decided that robotic radical prostectomy is the option for us. We met with a couple of surgeons specializing in robotic prostate surgery and have a surgery date scheduled for early March. A bone scan this scheduled for this week.

    The initial shock has worn off a bit. I am taking one day at time. Now that I have a specific treatment strategy I am feeling a little bit better. Right now my hope is that there are no cancer cells in the margins or lymph nodes after radical prostectomy. If there are, then I will just have to cross that bridge when I get to it. The same goes for the post surgical incontinence and impotence. We'll deal with those issues as they arise.

    Obviously our immediate family knows about my diagnosis. My wife and I have a large social circle and I am hesitant to tell our friends. I don't want them thinking of me just yet as "Mike with cancer" rather than just "Mike". I will let them know probably a week or two before the surgery. So many issues to deal.

    Thank you for taking the time to read my post. Felt good just to write it.

     
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    Old 01-26-2020, 05:22 PM   #3
    guitarhillbilly
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    Re: "You Have Cancer"

    Quote:
    Originally Posted by NJMike View Post
    That was what my urologist told me on the phone last week just as I was finishing my lunch. I don't think I've ever experienced anything more disorienting than hearing those words Within 3 hours my wife and I were at the urologist's office. My diagnosis is Stage II Gleason 8 prostate cancer. After exploring treatment options we decided that robotic radical prostectomy is the option for us. We met with a couple of surgeons specializing in robotic prostate surgery and have a surgery date scheduled for early March. A bone scan this scheduled for this week.

    The initial shock has worn off a bit. I am taking one day at time. Now that I have a specific treatment strategy I am feeling a little bit better. Right now my hope is that there are no cancer cells in the margins or lymph nodes after radical prostectomy. If there are, then I will just have to cross that bridge when I get to it. The same goes for the post surgical incontinence and impotence. We'll deal with those issues as they arise.

    Obviously our immediate family knows about my diagnosis. My wife and I have a large social circle and I am hesitant to tell our friends. I don't want them thinking of me just yet as "Mike with cancer" rather than just "Mike". I will let them know probably a week or two before the surgery. So many issues to deal.

    Thank you for taking the time to read my post. Felt good just to write it.
    First of All I wish you complete success in your treatment choice.

    "It was a complete and total shock."

    Did your UR discuss the reasons why he/she was doing a biopsy and discuss your PSA history?
    What was your PSA when you had the biopsy?

    I delayed doing a biopsy knowing that my PSA velocity was not heading in the right direction.Once I chose to do the biopsy I knew going into the biopsy that there was a very good chance I would be diagnosed with PCa so my letter from UR on mychart was not really a surprise.

    T2a Gleason Score=8

    My choice is Hormone Therapy + IMRT. Presently waiting the 2 months on Lupron before having the CT simulation.
    There is no right or wrong choice but each individual has to choose what they are comfortable with.

    On the day I found out the PCa diagnosis I waited 24 hours to tell my wife because she had a great day with her friends and was very happy. I could not bring myself to possibly ruin that for her.
    In my case the best medicine for me was to tell my family-friends- and close co-workers at various times in conversation.They have been very supportive and given many words of encouragement and prayers for my wife and myself. Holding back the diagnosis would have cheated me [us] out of this support which is VERY HELPFUL.
    If folks treat you differently then they most likely aren't your friends.

    Again, I wish the very best and complete success for you.

     
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    Old 01-26-2020, 06:56 PM   #4
    ASAdvocate
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    Re: "You Have Cancer"

    Since you were just diagnosed last week, you have made your treatment choice quite quickly. Often, the advice is to consult with a urologist, a radiation oncologist, and a medical oncologist before making such a consequential decision.

    Gleason 8 is now considered high risk, so this article may be of interest to you:

    https://prostatecancerinfolink.net/2018/03/15/brachy-boost-therapy-and-surgery-extend-survival-about-the-same-in-high-risk-patients-but-brachy-boost-does-more/

     
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    Old 01-26-2020, 07:40 PM   #5
    IceStationZebra
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    Re: "You Have Cancer"

    Of all the pieces of this process hearing those words was the worst part. It gave some certainty to what was up BUT I couldn't talk to any doctors or make any plans. Once I consulted with the doctor and made my plan it was much easier.

    The surgery was inconvenient and temporarily aggravating but really the worst spot was the words....

    Hang in the Mike.

     
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    Old 01-26-2020, 08:03 PM   #6
    DjinTonic
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    Re: "You Have Cancer"

    Welcome, Mike. Most of us here know the shock you had. Your attitude of one step at a time will serve you very well!

    You can create a signature with your PSA history and biopsy findings. Keeping your sig up to date will save you from having to repeat information with every question you want to post and will help those responding.

    Your bone scan and CT scans will give you and you doc an idea about prostate confinement but, assuming the results are good and surgery is your treatment choice, the path report on your removed prostate and lymph nodes will be the definitive word on your prostate-wide G score and the confinement question. That report and your post-op PSA trend will determine whether or not further treatment is needed after surgery.

    Keep in mind that studies claim that about 50% of G8 biopsies are downgraded after surgery (the rest stay as G8 or are upgraded).

    Relax and let your surgical team work for you. The one piece of advice I have is something you may already know: a RP is one of the most difficult procedures, and choosing a very experienced surgeon is the most important thing you can do to ensure the best outcome.

    Djin
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    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, 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
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 01-26-2020, 08:59 PM   #7
    guitarhillbilly
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    Re: "You Have Cancer"

    Quote:
    Originally Posted by ASAdvocate View Post
    Since you were just diagnosed last week, you have made your treatment choice quite quickly. Often, the advice is to consult with a urologist, a radiation oncologist, and a medical oncologist before making such a consequential decision.

    Gleason 8 is now considered high risk, so this article may be of interest to you:

    https://prostatecancerinfolink.net/2018/03/15/brachy-boost-therapy-and-surgery-extend-survival-about-the-same-in-high-risk-patients-but-brachy-boost-does-more/
    Thank You for the Link. Excellent Information.

     
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    Old 01-27-2020, 04:43 AM   #8
    NJMike
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    Re: "You Have Cancer"

    My PSA levels have all been within the normal range for the past two years. Last year my urologist felt an irregularity in the prostate and this December he felt a nodule. My PSA level was still in the normal range but he ordered a biopsy anyway just to be sure. Turns out the nodule is a Stage II Gleason 8 cancer. So the good news is we caught this relatively early. The fact that it is an aggressive Grade 8 cancer means we cannot "wait and see" and I feel surgery is the best option for me. My biggest fear is the docs find cancer cells in the margins or lymph nodes. That would require a whole different mind set that I am not really to deal with yet.

     
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    Old 01-27-2020, 05:31 AM   #9
    Michael F
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    Re: "You Have Cancer"

    Hi Mike! Very sorry that you received "The 3 Dreaded Words!"

    Put things into immediate proper perspective: You did NOT receive a death sentence! However, your diagnosis requires intervention - as you are well aware.

    Most prostate cancers (PCa) tend to progress slowly. Following Biopsy (Bx), most URO MDs wait for about 7 weeks to treat. This allows for a very angry prostate to calm down! Thus, you have time to quickly get educated about your options. Use it wisely and take decisive action. Fortunately, PCa has multiple curative treatment options. There are 2 main categories:

    1. Surgery

    2. Radiation = multiple modalities

    Your responsibility is to determine which treatment:

    - offers the best chance for immediate Cure
    - best addresses your specific disease status
    - best suits your psyche

    My suggestions:

    - Get 2nd opinions from expert MDs who specialize in treating PCa
    - Ask if you should have any imaging studies performed to help determine your best treatment option. e.g. MRI, PET/CT scan
    - Get a book on PCa. There are several. I prefer the Patrick Walsh, MD, Guide to Surviving Prostate Cancer 4th edition
    - Get a notebook and record your MDs' advice, keep a list of questions and MD answers
    - Bring a 2nd person with you to all MD consultations to take notes. A 2nd set of ears is always best.
    - Make sure that you are treated only by a highly experienced MD PCa specialist. There is only 1 opportunity for a perfect outcome!

    Keep in mind:
    - Gleason 8 places one in a high risk category.
    - Following Radical Prostatectomy (RP), approximately 30% require follow up radiation

    When convenient, please create a "Signature" that contains:
    - Age
    - PSA history
    - Bx Report key findings: # of cores, # of positive cores

    Stay calm and optimistic! Focus on the fact that you will get through this!

    Coincidentally, my name is also Mike & I am very familiar with Eatontown, NJ but I do not play golf left handed!

    MF
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    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free =13%)
    Jan '12: Biopsy: 1/12 = G7 (3+4) & 5/12 = G6
    March '12: Robotic RP: Left: PM + EPE => Surgeon went back and excised additional adjacent tissues on Left side down to (-) Margins
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    uPSA Range: 0.017 - 0.039 at 105 Months Post Op: Mean = 0.023 (n = 26)
    LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%) ED = present

     
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    Old 01-27-2020, 06:23 AM   #10
    NJMike
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    Re: "You Have Cancer"

    Mike:

    Thank you for your comments....much appreciated.

    Interesting to know that you are familiar with Eatontown, NJ. I was born and raised in this area. I traveled around for awhile and then came back in 1990 to settle down with my family. Nice area....we are 10 minutes from the beach and an hour from NYC, AC and Philly.

    So my wife and I are going through our due diligence in understanding our diagnosis and treatment options. We both decided very early on that because my cancer is aggressive and high risk we are going to have the robotic radical prostectomy. The good news is we have caught this relatively early (cancer is localized in a portion of the prostate) and we are moving on our treatment quickly. My wife is an RN with 18 years in the OR and she has done a number of robotic surgical cases. Ironically now she is an oncology nurse.

    We are meeting this afternoon with an radiation oncologist to get a better understanding of post surgery radiation treatments if they are needed. Tomorrow I am meeting with a medical oncologist who went through a RP. Should be an interesting and informative conversation. Wednesday I have a PET bone scan. Surgery is scheduled for March 4th.

    My hope is that the surgery removes all the cancer and there are no cells in the margins or in the lymph nodes. i understand there is a very real possibility it might have spread. It's very hard. I go back and forth between feeling very hopeful and feeling very scared.

    I want to thank you for your suggestions and comments. They were very helpful and supportive.

    Regards,
    Mike

     
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    Old 01-27-2020, 08:26 AM   #11
    Steve135
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    Re: "You Have Cancer"

    NJMike, If we are posting we have all heard those words. It was hardest telling my wife! But I delivered mail in NJ and anyone on my route thats asked or maybe not heard my story. I found it to be great threapy hearing others going through what I was about to go through. For me the next set of words was it's back! Wasn't nearly as bad as the first as we knew it might happen at some point. Just not 1 year 4 months. The next set of words its back again, we were pros at it now! In a few days I'm hopping to hear my PSA is down from last months cyberknife treatments!
    steve d

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    Diag. 56 DOB 2/59 PSA 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins NP lN's 5 neg pT3a,N0
    PSA 10/16 0.1 1yr 02/7/17 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm BCR rt. SVB Casodex + Trelstar
    04/17 SRT (42)
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/30 03.2 6/19 0.34 7/19 0.06 8/19 0.08 9/19 0.056
    10/190 0.08 11/19 0.07 12/19 0.07
    7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion

     
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    Old 01-27-2020, 08:53 AM   #12
    NJMike
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    Re: "You Have Cancer"

    Steve,

    Thank you for taking the time to reply. hearing the words were hard but hardest thing was telling my kids.

    We now have a treatment strategy and are hoping for the best outcome.

    You and I are now "brothers-in-arms" in the fight against cancer. Let's keep fighting and keep charging.

    Mike

     
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    Old 01-27-2020, 11:03 AM   #13
    Steve135
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    Re: "You Have Cancer"

    Mike had my surgery 2015 at Monmouth Medical Dr Pierre Mendoza

    steve

     
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    Old 01-27-2020, 01:40 PM   #14
    Prostatefree
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    Re: "You Have Cancer"

    Cancer sucks. PCa is treatable. Still sucks. PCa is "curable." Still sucks.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    1-15-21 PSA less than 0.02; zero club 4.5 yrs

     
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    Old 01-27-2020, 01:46 PM   #15
    NJMike
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    Re: "You Have Cancer"

    I have to agree with you on that !

     
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