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  • How dire is this path report. Gleason 5+4

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    Old 06-09-2021, 06:31 PM   #31
    DjinTonic
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    Re: How dire is this path report. Gleason 5+4

    Stereotactic pelvic radiotherapy with HDR boost for dose escalation in intermediate and high-risk prostate cancer (SPARE): efficacy, toxicity and quality of life (2021)

    https://www.sciencedirect.com/science/article/pii/S0167814021065671?casa_token=Z-5fIVQCvMEAAAAA:Bx_Kd--CJbpYCtC4Vn0ICMrE-GiVLtyU8-6RqwcyZKMy35osoHnOQiBfotOad1ThPo4GbGGR

    Djin
    __________________
    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 06-10-2021, 02:12 PM   #32
    Terry G
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    Re: How dire is this path report. Gleason 5+4

    Hi John, Although the scan result was not the news you hoped for it’s better to have that information before selecting a treatment plan. The information in this thread will most likely prove valuable not only to yourself but to others struggling with a treatment decision.

    I have a friend who is just finishing up two years of ADT following surgery for Gleason 9. His urology team thought his cancer was fully contained and that surgery was his best option. Following the surgery his PSA failed to drop to undetectable and he’s since had EBRT and ADT. Since you expressed concern for ADT I thought I’d pass on his comments and experience.

    “I had 39 radiation treatments and I really didn’t experience any severe side effects. The hormone I have been getting is called “Eligard”. There are some side effects with this but other than the hot flashes and somewhat of a lack of energy, I really havn’t had any problems. I know some guys claim that the ADT is turning them into a women but I’m convinced that the key to avoiding that is to push thru the lack of energy and stay as active as you possibly can. It has worked for me. My doctor said there is a prescription drug that might help with the hot flashes but I declined.I didn’t want to take anything if I could get by without it so I just grin and bear it. He also said some people find an all natural supplement called “Black Cohosh” helps but I havn’t used that either. Working out almost every day and trying to keep a positive attitude is what has worked for me.”

    My RO says he definitely sees that patients that remain active during and following RT clearly do better than those that are not active. My friend and I are both active at our YMCA and regularly attend spinning (cycling) classes as well as other light exercises. John…if you don’t already have a gym membership you might consider getting one. The best way to combat the side effects of ADT is to be as active as possible.
    __________________
    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 06-10-2021, 02:40 PM   #33
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by Terry G View Post
    Hi John, Although the scan result was not the news you hoped for it’s better to have that information before selecting a treatment plan. The information in this thread will most likely prove valuable not only to yourself but to others struggling with a treatment decision.

    I have a friend who is just finishing up two years of ADT following surgery for Gleason 9. His urology team thought his cancer was fully contained and that surgery was his best option. Following the surgery his PSA failed to drop to undetectable and he’s since had EBRT and ADT. Since you expressed concern for ADT I thought I’d pass on his comments and experience.

    “I had 39 radiation treatments and I really didn’t experience any severe side effects. The hormone I have been getting is called “Eligard”. There are some side effects with this but other than the hot flashes and somewhat of a lack of energy, I really havn’t had any problems. I know some guys claim that the ADT is turning them into a women but I’m convinced that the key to avoiding that is to push thru the lack of energy and stay as active as you possibly can. It has worked for me. My doctor said there is a prescription drug that might help with the hot flashes but I declined.I didn’t want to take anything if I could get by without it so I just grin and bear it. He also said some people find an all natural supplement called “Black Cohosh” helps but I havn’t used that either. Working out almost every day and trying to keep a positive attitude is what has worked for me.”

    My RO says he definitely sees that patients that remain active during and following RT clearly do better than those that are not active. My friend and I are both active at our YMCA and regularly attend spinning (cycling) classes as well as other light exercises. John…if you don’t already have a gym membership you might consider getting one. The best way to combat the side effects of ADT is to be as active as possible.
    Thanks Terry for the encouraging feedback. My plan is to continue rigorous weight training during treatment and beyond, along with plenty of cardio. Fortunately my apartment has a nice gym and trails. My biggest struggle is my treatment resistant anxiety.... not good.

    -John

     
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    Old 06-11-2021, 07:42 AM   #34
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    Re: How dire is this path report. Gleason 5+4

    Good morning John. You wrote:
    Quote:
    Originally Posted by john_ct1 View Post
    Next week I'm consulting with the head of Urology at UPENN in Phildalphia.
    Thx -John
    PS. Just got off the phone with my urologist. He said I'm no longer a candidate for surgery. I'm meeting with a radiation oncologist on Friday.
    I too heard almost exactly those words, only slightly more blunt: "You're not a candidate for surgery!" I was devastated, as was my wife. That was back in late 1999, and the obvious options beyond surgery were not good back then. Fortunately, I found a good path.

    As you probably now know, modern radiation with imaging plus supportive technologies is at least as good as surgery at eliminating the cancer and has a good profile of side effects. You have a good shot at beating this thing. Keep your spirits up!

    ….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 06-11-2021, 07:55 AM   #35
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    Re: How dire is this path report. Gleason 5+4

    Quote:
    Originally Posted by DjinTonic View Post
    Jim, "persistent PSA" occurs when a the post-RP PSA is detectable on the standard PSA test (i.e. the results are not <0.1) after an adequate waiting period, of course....
    Thanks Djin. I am accustomed to thinking in terms of ultrasensitive PSA test results and trends and had not noticed the term "persistent PSA", which I am now already noticing in frequent use.

    For those of us curious about prostate cancer and its treatment, learning is constant.

    Jim

     
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    Old 06-11-2021, 08:06 AM   #36
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Thanks Jim (I love your feedback and wisdom!). Just met with an amazing Radiation Oncologist. With my lymph node involvement treatment is pretty cut and dry.. IMRT Radiation (2 months) + ADT (up to 2 years). The RO was very encouraging. He expects me to tolerate therapy very well (being young and very healthy is a big plus) and a cure/remission is quite possible. I was also very impressed with the staff and facility there. They only treat PCa at this facility. I chatted with a patient in the waiting room who's halfway through his treatments... he had glowing comments about his treatment there and the docs/staff. Next step in starting Casodex and SpaceOar/Markers. Also scheduled for a 2nd opinion next week with the top guy at UPENN for peace of mind.

     
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    Old 06-11-2021, 08:32 AM   #37
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    Re: How dire is this path report. Gleason 5+4

    John, regarding exercise, you wrote:
    Quote:
    Originally Posted by john_ct1 View Post
    Jim,

    "However, effective use of known countermeasures will substantially reduce or eliminate most side effects, making ADT quite tolerable for many of us, including me."

    What countermeasures did you employ? I keep hearing that consistent and intense weight training is very effective.
    You have probably noticed the master thread I started about side effects of ADT and countermeasures for those effects. When I started to respond to your question earlier, I realized that there was a lot of ground to cover and that the question was of general interest, so I decided a new thread was best.

    However, regarding your specific question about weight training, I fully agree with Terry and his friend: being physically active is very important (if possible) in my opinion. It helps with many potential side effects, including energy, muscle strength, fatigue, weight gain, metabolic syndrome, and depression; that's just what immediately comes to mind; I hope to do a more comprehensive look someday under the umbrella of the new thread on countermeasures and side effects. As a very important side benefit, an exercise program is also heart healthy, and cardiovascular disease is an even greater threat than prostate cancer for most of us.

    I'm speaking from experience. I was active throughout my fourteen years on intermittent ADT. My main exercise prior to that was racewalking, and I kept that up, though at lower speeds - still a lot faster than most people are able to walk. It's a great aerobic and weight-bearing exercise, but walking at a slower, even a normal or slow pace is also very good for maintaining fitness, and there's research to prove it.

    Back at the start for me, around early 2000 there was not a great appreciation for weight/resistance exercise for prostate cancer patients, but that soon changed as research accumulated. Now it is seen as important. If you are up to it, intense weight/resistance exercise would probably be best, but any such exercise would probably be good.

    It is true that ADT with drugs that reduce testosterone (not all ADT drugs do) will reduce muscle mass and thereby decrease strength unless countered. However, my own experience proved that it can be countered. I did not know this for my first round of 31 months of ADT with Lupron, and I lost some muscle mass and strength. But in my second or third round, having learned about the importance of weight work, I deliberately tried to maintain my strength, mainly by regular gym work - not frequent, but once or twice a week with workouts of one to two hours. I logged the weight I could lift (mostly resistance machines) with a regular routine. I was actually able to increase the total weight somewhat while on ADT! Not all of us will be able to do that, either because we are not up to the exercise physically (which I appreciate ever more as I approach my 78th birthday), or because we just lack the motivation. But if you are up to it, I'm convinced you will find the effort rewarding.

    To me, the best program focuses on both aerobic and weight/resistance exercise but also includes elements for flexibility and balance.

    Dr. Stacey A. Kenfield, ScD, presented on exercise for prostate cancer patients at the recent 2021 Patient Conference for Prostate Cancer by the UCSF and California Prostate Cancer Coalition. Her talk will be online, hopefully soon. She made many important points.

    Good luck with your program.

    ….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 06-11-2021, 08:41 AM   #38
    Terry G
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    Re: How dire is this path report. Gleason 5+4

    The best can make a huge difference. The ones specializing in PCa generally keep great data and regularly meet with their peers to stay at the top of their game. Terry
    __________________
    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 06-11-2021, 08:58 AM   #39
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    Thanks Jim. It's surprising to me that one can actually build muscle without testosterone and other androgens. Yes, the other health benefits of exercise are huge... you can add delaying cognitive decline/dementia to your list. Interesting to think that dramatic lifestyle changes, that a conscientious PCa patient would not have otherwise made, might be adding to their overall longevity/quality of life w/o PCa.

    "The most potent drugs we have are food and exercise" -Dr. Peter Attia.

    -John

     
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    Old 06-18-2021, 09:59 AM   #40
    john_ct1
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    Re: How dire is this path report. Gleason 5+4

    I just meet with the top Urologist at UPENN (Dr. Guzzo) for a 2nd opinion. He recommend an RP with extensive lymph node removal. My regular Urologist discounted surgery and recommend Radiation plus ADT (actully got my 1st ATP shot on Wednesday - Firmagon). The UPENN doc said surgery will give me the best flexibility going forward. Interestingly Dr. Guzzo trained my current urologist. Guzzo has done many 1000s of RARPs. I'm leaning towards surgery. I wasn't expecting this recommendation given that a lymph is already evolved.

    -John

     
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    Old 06-19-2021, 06:30 AM   #41
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    Re: How dire is this path report. Gleason 5+4

    Debulking surgery is a cancer treatment strategy. Your young age, general health and natural life expectancy, local tumor extent, and the genetic aggressiveness of the cancer will be factors to consider imo.

    Major life insurance companies have good monograms for calculating life expectancy. Mine came in at 88 years.

    Extensive removal of lymph nodes can have side effects.

     
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    Old 06-19-2021, 08:20 AM   #42
    DjinTonic
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    Re: How dire is this path report. Gleason 5+4

    I am not at all surprised that RP was advised as a primary-treatment option.

    When the cancer is either prostate-confined or locally advanced (as your imaging would indicate), surgery for high-grade men is done with what is termed "curative intent." It is possible that removing the prostate and a number of nodes removes all the cancer.

    As I wrote above, adjuvant therapy may needed to complete your primary treatment because of an adverse finding in the path report and/or persistent PSA following surgery. If any of the removed nodes are confirmed to be positive, adjuvant therapy will likely be recommended.

    There is also a decent chance that your definitive (post-op) Gleason score will be downgraded to G8 (4+5) for a number of reasons. Very briefly, (1) pattern prevalence is 3 > 4 > 5. (2) Pattern (4+5)+ is much more common than (5+4). (3) About 32% of men who are G9-10 on biopsy are downgraded after the whole prostate is examined. (4) When there are two different patterns in the biopsied tissue, is basically hit-or-miss whether the predominant pattern in the small amount of biopsied tumor is the same as the predominant pattern in all the tumor prostate-wide. If spread to the lymph nodes is confirmed, however, the actual Gleason score is not that important.


    Djin
    __________________
    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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