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    Old 01-31-2021, 09:27 AM   #1
    aleaddict
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    FNG with PC

    Greetings everyone,

    My name is Brian. 62y/o with hypertension, otherwise in excellent health.

    I had my routine annual physical in mid-Dec 2020. Found out my PSA was 22.6 (only prior PSA was 4.6 from 2016). MRI confirmed a 9x6mm T2 lesion PI-RADS 4.

    Biopsy results were equally as scary. Of the tissue samples that came back positive for adenocarcinoma, I had a Gleason of 3+3=6, 3+5=8, 3+4=7 and 3+5=8. Only one core states there is perineural invasion.

    Next came Chest x-ray, CT of abdomen and pelvis with contrast and full body bone scan. There was no radiographic evidence of metastatic disease on both CT and x-ray. However, the nuclear med study was inconclusive. Waiting for pre-auth for chest CT to rule out mets in the cervical/thoracic region.

    If there is any good news is that there is "No lymphadenopathy or obvious extracapsular extension."

    I'm anxiously waiting for ins co to authorize my chest CT. What happens next depends all on those results. I have discussed three possible treatment plans with my oncologist, assuming no distant mets found in lymph nodes or bone. One is RP using robotic surgery. Second and third options both involve radiation therapy: EBRT and brachytherapy as one option, and the other using same therapy except adding AST for 1.5-2 years. My first instinct is to surgically remove the prostrate and margins, plus resect some regional lymph nodes for biopsy. On the other hand, recent literature seems to support "beam & seeds" over surgery. One consideration I was told is if I choose radiation the option for surgery is off the table.

    So that's my introduction. I'm grateful no mets have been found (yet) but still feel I got a late jump out of the gate. I want to meet my unborn grandchildren someday... I want to ride motorcycles throughout Viet Nam for a month... I want to visit every distillery in Scotland in search of that perfect single malt. There are a lot of things I want to do in life and its scary to think I'll never do them. But knowing your enemy and engaging is half the battle, and before this is all over I plan to make the enemy my *****!

     
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    Old 01-31-2021, 03:55 PM   #2
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    Re: FNG with PC

    It the combination of beam radiation and a brachytherapy boost fails, the cancer was probably already outside the prostate, so surgery will not be done. A PSMA scan followed by targeted radiation of the prostate bed is a next step if that happens.

    The recent studies show strong non-recurrence results for brachy boost protocol, usually with ADT. Ask and research, the more you learn, the more confident your treatment decision will be.

     
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    Old 01-31-2021, 06:32 PM   #3
    Terry G
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    Re: FNG with PC

    FNG, Sorry to meet you here; but, glad you found this site. It’s an excellent place to learn and since you’re up for fight you’ll find other’s in your corner. Your diagnosis is serious but one where a cure is likely. One of the most difficult challenges is selecting the best treatment for you and there are a lot of choices to wade through. You’re in the high risk group and surgery may not offer the best chances for a cure. A site called prostatecancerfree is helpful at understanding the rate of success for different treatments. It takes a little time to learn some of the features but I found the graphs very helpful especially if you clear all the circles first and then add treatment choices one at a time.

    I’m sure you heard that once you’ve had radiation that surgery is not likely if the radiation fails from a urologist. Although the statement is accurate it is also very misleading. If surgery fails...you don’t have more surgery...you most likely will have radiation. If radiation fails there are other options. I would focus on what treatment offers the best chance of a cure and has least long lasting side effects. The motorcycle ride is far more comfortable without urinary pads.

    Most high risk guys are better served with some kind of combination radiation treatment. A urologist is not prepared to discuss radiation options and neither is a radiation oncologist prepared to properly discuss surgery. I would strongly recommend seeking out a RO who specializes in PC. The best can make a difference between success and failure. If you post a location often times you can find more specific recommendations. It’s very important to make an informed decision. Keep learning and keep posting.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
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    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6, 0.8

     
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    Old 02-01-2021, 12:53 PM   #4
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    Re: FNG with PC

    Hi Brian and welcome to the Board!

    I suspect the vast majority of us think, shortly after diagnosis and scans, that surgery would be the best choice. I certainly did. (Thankfully, the surgeons rejected my request.) That’s probably because we feel we want the cancer out of our bodies and the problem done with, case closed. Unfortunately, even for men who are good bets for success with surgery, prostate cancer cells have usually already left the prostate before surgery and may even be in the bones. The good news is that, for lower risk men, these cells are often not capable of lasting on their own; they are not viable, and therefore they do not cause metastases that have any staying power; they are not a problem. But for the higher Gleason-score cancers, especially GS-8 and higher, those escaped cells often do have staying power, and they are often out of the reach of surgery unless limited to reachable lymph nodes. Moreover, initially these cells often form very small metastases (“micro metastases”) that cannot be picked up by standard CT (including contrast) and technetium bone scan imaging. In short, they are dangerous and stealthy.

    That’s why Gleason 8 cancers treated with surgery have a VERY high recurrence rate. One study at Johns Hopkins, a citadel of prostate cancer surgery world-wide, found that, despite average PSAs well below ten and DREs that suggested no penetration of the prostate capsule by the cancer, 80% of “high-risk” patients experienced cancer recurrence over the next fifteen years! (J.I. Epstein and colleagues, Long-term survival after radical prostatectomy for men with high Gleason sum in pathologic specimen, Urology, 2010, abstract available for free at https://pubmed.ncbi.nlm.nih.gov/20350749/ with link to free copy of the complete paper). (On the good side, actual survival of prostate cancer by these men approached 90% at fifteen years if the disease was confined to the prostate per the post-surgery pathology. Therefore, older men, though they might have burdensome and serious metastases, would often outlive their prostate cancers.)

    Therefore, in the early 2000s, when surgery was still “the gold standard” for treatment and radiation had well-known limitations both in curing cancer and in its burden of side effects, a diagnosis of Gleason 8 cancer, was not exactly good news. It still isn’t, but these days the situation is far better. Radiation has improved greatly in both effectiveness against the cancer and in the side effect burden, in fact achieving remarkably low average side effect burdens, with specific long-term side effects in the low single digits. The turning point was roughly around 2007 when really effective imaging and targeting for radiation coupled with other advances. Either as a salvage follow-up after typical surgery failure to cure for Gleason 8 and higher-risk cancer, or as the main therapy focus, almost always joined with a limited course of ADT, radiation is quite effective in either achieving a cure or throwing the cancer way back on its heels. The great thing about radiation is that it can reach locations of cancer that are far beyond the reach of surgery, and these days it can do it safely in the vast majority of cases so that the patient does not pay a heavy price in side effect burden. Also, the micro mets treated by such radiation are not continuing to grow for years after surgery before they show up as a recognizable recurrence. You need to at least give yourself the benefit of learning what modern radiation can do.

    An outstanding recent book that goes over the options for men with Gleason 8 and other high-risk prostate cancer (as well as all other types of prostate cancer) is “The Key to Prostate Cancer” by medical oncologist Mark Scholz, MD, and 29 others, most leading experts. The “Azure” section of the book is for men like you who have “high-risk” prostate cancer.”

    At the end of the day you must make your own choice, and the fact that YOU have made the choice will give you a certain sense of empowerment. There is a lot to think about, and I’m sure there will be others who will be glad to chime in to help in addition to those of us who have already posted. I hope you get to enjoy those grandchildren, motorcycles and distilleries in the years to come. I think you have a good shot at succeeding.

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

    Last edited by IADT3since2000; 02-01-2021 at 12:54 PM. Reason: Typo.

     
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    Old 02-02-2021, 08:27 AM   #5
    aleaddict
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    Re: FNG with PC

    I appreciate all the replies. This experience has been a real kick in the gut. My CT results from yesterday show "No dominate non-calcified pulmonary nodules or mass lesions," so I suppose that means no mets in radiographic speak. Also mentioned was "no lymphadenopathy." Now just waiting for oncology office to open this morning to discuss results and formulate a plan of attack.

    A little more background ... I live in Eagle, ID. I work in cardiac as a perfusionist (operate the heart-lung machine). I am what you would call an Allied Healthcare Professional, similar to PA, NP or CRNA. When it comes to PC I'm a total noob, especially after reading some of the bio's you guys have written.

    I have studied the graphs on prostratecancerfree(dot)org and read nearly every study cited within the last 10 years. Now I know why my oncologist recommended the 3-prong approach: EBRT, brachytherapy and ADT. He has sent several of his PC patients to Seattle, WA for seed placement. RO graduated medical school from UCI and did his residency at Stanford. As soon as my oncologist sends the referral I'm booking a flight to Seattle for consultation. I hear the weather is lovely there in February lol.

    I was hunting chukar with my pup Zac Brown the day my PCP called about my PSA results. Season ended two days ago but my fight against PC has just begun. Thanks for everyone being there and providing this forum to share your experiences.

    Last edited by aleaddict; 02-03-2021 at 12:19 PM.

     
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    Old 02-03-2021, 03:40 AM   #6
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    Re: FNG with PC

    Glad you found the board. Keep asking questions. Maybe see you in two weeks! Denis
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    65YO healthy man, PSA 5/17 4.6, MPMRI, 5/17 lesion. 13 core biopsy 3 positive 3+3 All cores less than 30% 8/17 - second opinion Yale (3+4) in one core, < 5%, decipher test shows intermediate risks. HDR BT completed 2/6/18. 5/3/18 3 month Post HDR BT PSA 1.3, 6 mo PSA 1.2. 1-year PSA 1.0, testosterone 475, 18 month PSA 0.4 Testosterone 524, 24 month PSA 0.4, 32 month PSA 0.4 Testosterone 391, 40 months PSA 0.3, Testosterone 630.

     
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    Old 02-03-2021, 05:10 AM   #7
    IADT3since2000
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    Re: FNG with PC

    Quote:
    Originally Posted by aleaddict View Post
    ... I have studied the graphs on prostratecancerfree(dot)org and read nearly every study cited within the last 10 years. Now I know why my oncologist recommended the 3-prong approach: EBRT, brachytherapy and ADT. He has sent several of his PC patients to Seattle, WA for seed placement. RO graduated medical school from UCI and did his residency at Stanford. As soon as my oncologist sends the referral I'm booking a flight to Seattle for consultation. ....
    Hi again,

    We know more than you do now about prostate cancer, but no doubt you are far ahead of where most of us, including me, were at the start. That medical career is now paying off in that accessing and using medical research papers is old hat to you, and you have likely had quite a bit of at least indirect exposure to medical decision making and the whereabouts of medical expertise.

    Also, how ideal that you are consulting with a medical oncologist! They are kind of honest brokers as they do neither surgery nor radiation - their bag of tricks being mostly drugs, but they tend to be familiar with the research on both surgery and radiation, as well as on drugs, and my impression is that they tend to do a good job of keeping up generally with research and advances. They are also best suited, in my view, for post-treatment monitoring and drug treatment, especially with ADT, which is so important for supporting radiation for high-risk cases.

    As you may know, Seattle was a hotbed for bringing advances in radiation, particularly in brachytherapy, to the US years ago, and I'm confident it is still excellent in radiation. Stanford (and the nearby UCSF community) has been a leader in radiation and prostate cancer imaging, which is very important in supporting radiation.

    In addition to the resources already mentioned, the website of the Prostate Cancer Research Institute, pcri.org, has an abundance of useful resources.

    It looks to me that you are doing all you can to put yourself in the best position!

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 02-03-2021, 11:17 AM   #8
    Terry G
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    Re: FNG with PC

    FNG, a great choice and a great attitude. With your background you may have participated or observed surgery and know how difficult it is to see either nerves or cancer. As my wife who is an RN who has observed and assisted in surgery likes to tell me, nothing is color coded like you see in textbooks. Some cancer cells can go undetected during surgery to later metastasize; especially Gleason pattern 4 or 5. The combination of radiation and ADT can treat the prostate and surrounding areas. A double course of radiation will make short term side effects worse and the ADT will not be fun; but, I believe this combination offers the best chance for a cure. I also believe that this option is far better than dealing with the effects of a failed surgery.

    Since my RO is almost three hours away all of my follow up has been by virtual visit. Possibly some of your preliminary consults can be done using that technology. I’m glad you’re seeking out the best practitioners and learning the ropes; after all you are in the ring. It’s your fight to win.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6, 0.8

     
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    Old 02-05-2021, 10:00 AM   #9
    Insanus
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    Re: FNG with PC

    I would do two things. I would get a second option on the biopsy and a genomic test of the tissue.

     
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    Old 02-05-2021, 10:46 AM   #10
    aleaddict
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    Re: FNG with PC

    Quote:
    Originally Posted by Insanus View Post
    I would do two things. I would get a second option on the biopsy and a genomic test of the tissue.
    Even through the pathologist who diagnosed and graded my PCa completed his fellowship with Epstein, I did request the core samples be sent to JHU for a 2nd opinion. In my research I have yet to read anything about a genomic test but I'll look into it.

     
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