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New Advanced Prostate Cancer Guideline

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Prostate Cancer
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/25/2020 12:38 PM (GMT -8)
The American Urological Association, American Society of Radiation Oncology, and Society of Urologic Oncologists has released a new guideline today for Advanced Prostate Cancer (APC). This is directed at physicians and patients alike. From a logistical standpoint this took us two years to compile. We worked with NCCN, ASCO, ASTRO, and SUO. Again, if you have APC these statements may help clarify why you are on the path you are on. If you haven't had treatment yet, this may help guide you to what's next.

I hope all I know here are doing well. I don't post here anymore but was asked to do so on this one. As far as my journey with APC, I am 13 years out and still in remission. I hope the same for all. This document is the 14th published document as a patient representative in all the top societies and research teams. I can say I have a totally different perspective than when I started out in 2006. Peace to all! Stay well and Stay Positive!

Guideline Online:
https://www.auanet.org/guidelines/advanced-prostate-cancer

Post Edited (Tony Crispino) : 6/25/2020 2:42:21 PM (GMT-6)

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mattam
Veteran Member
Joined : Aug 2015
Posts : 4124
Posted 6/25/2020 12:55 PM (GMT -8)
Thanks! Very informative.
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Tudpock18
Forum Moderator
Joined : Sep 2008
Posts : 5433
Posted 6/25/2020 3:56 PM (GMT -8)
Tony, thank you for sharing. I'm sure this will be helpful to many men and their families who visit our site.

It's also nice to hear from you again. We have missed your wisdom, knowledge and passion but I'm glad to see that you are still very involved in our collective fight against the beast. Hope you won't be a stranger and will drop in from time to time.

Best regards,

Jim

P.S. For those of you who don't know Tony, he was a moderator on this forum for many years and has served as an advocate for all of us. As you can see from all of the letters behind most of the names in his link, Tony is one of the very few lay people involved so deeply with the medical community and brings a valuable perspective to them as both a former PCa patient and knowledgeable contributor.
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trailguy
Veteran Member
Joined : Jul 2015
Posts : 900
Posted 6/26/2020 3:47 AM (GMT -8)
Good read, thanks. I have added it to my library. smile
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JNF
Veteran Member
Joined : Dec 2010
Posts : 5773
Posted 6/26/2020 4:15 AM (GMT -8)
To add to Jim’s PS. Tony has been a named contributor on several such studies and reports demonstrating his significant contributions to several such organizations so important to the people on this forum. As I remember, this started when he was named a patient advocate on an advisory board for SWOG (Southwest Oncology Group), one of the nation’s largest and most important cancer research organizations. Currently nearly 250,000 patients are enrolled in clinical trials conducted by SWOG. They have sponsored many important PCa trials and studies that many of us and our doctors have relied on to direct treatments. My thanks to Tony for his dedication and work.
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steve0
Regular Member
Joined : Dec 2016
Posts : 276
Posted 6/26/2020 4:39 AM (GMT -8)
A lot of info but didn't see my diagnoses... All I have is nodules in lungs... bone scan clean.....
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/26/2020 8:40 AM (GMT -8)

steve0 said...
A lot of info but didn't see my diagnoses... All I have is nodules in lungs... bone scan clean.....

Steve,
It will help to define visceral in your case. Visceral is basically soft tissue organs such as: liver, kidney, lung, brain, etc. So if your lung nodules are confirmed (through biopsy or suspected response to treatment) then you fall in the definitions in Terminology and Definitions and attention to Table 3 as either high risk or high volume metastatic disease. We define the differences because there may be a dividing point in decisions on treatment. High risk and/or high volume may vary treatment approaches through standard or intensified treatment options.

We define 5 types/phases of advanced prostate cancer. BCR, nmCRPC, nmHSPC are out for you because those types show no clearly defined metastasis. So you are either mHSPC or mCRPC depending on whether you disease is responsive to hormone therapy. I do not know your current status but I think you can define where you are for your inclusion in this paper.

T
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SJO36
New Member
Joined : Nov 2019
Posts : 15
Posted 6/26/2020 9:06 AM (GMT -8)
Great document, and thank you Tony for all your work on it.

One question, why is there nothing about quality of life related to all the long term ADT? I would think that prescribing venlafaxine for hot flashes/depression and diet to control the weight gain would be in the expert reccommendation category at this point?

I know some guys don't struggle with it too much, but over in the wives support group there are a LOT of suffering families. The really heartbreaking ones are the guys diagnosed with mets in their mid-40s who have kids in elementary school that don't understand why daddy is grumpy and won't play with them anymore.
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/26/2020 9:08 AM (GMT -8)
Tud and JNF,
TY for the kind words. But I'd be forgetful if I didn't mention that my journey to becoming a published patient representative started right here at HealingWell in 2006 when I was diagnosed. At the time discussion forums were few and the finding of my peers helped me greatly. I learned a lot from not only my own case but from so many other cases as HW became one of the most popular forums on the internet for prostate cancer. I admittedly was not as good a moderator as others but technically I was learning a lot about prostate cancer cases. When I was asked to start partaking in advocacy groups I was ready. While there was some activities that I enjoyed doing the best were related to helping others. In 2010, I started running the UsTOO Las Vegas live support group and I still run that group. Although we haven't been having those meetings because of Covid-19, I am still doing that. From there my oncologist, who was a group co-chair at SWOG asked me to join SWOG. That included a lot more learning at a level I was quite novice. But it didn't take long to become as they say - a researcher. From there it was off to many great opportunities. From there I became friends and colleague to many great physicians in research and practice.

But it started right here. And I make sure the folks here are heard. I thank you all. This list below is an active list today. My work in these groups is strictly as a volunteer. But I do disclose that I get travel and expense coverage through The Hope Foundation - the leading supporting funding outside the federal government for cancer research at SWOG and the National Clinical Trials Network of the NIH. Everything else below they help fund as they consider it continuing education for me in research.

It's all been a blessing.

T

Affiliations/Memberships
American Society of Clinical Oncology (ASCO)
Southwest Oncology Group (SWOG)
National Cancer Institute/NIH (Prostate Cancer Task Force)
American Urological Association (AUA)
American Society of Radiation Oncologists (ASTRO)
Society of Urologic Oncology (SUO)
National Alliance of State Prostate Cancer Coalitions.
Movember Foundation
UsTOO International
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/26/2020 9:45 AM (GMT -8)

SJO36 said...
Great document, and thank you Tony for all your work on it.

One question, why is there nothing about quality of life related to all the long term ADT? I would think that prescribing venlafaxine for hot flashes/depression and diet to control the weight gain would be in the expert reccommendation category at this point?

I know some guys don't struggle with it too much, but over in the wives support group there are a LOT of suffering families. The really heartbreaking ones are the guys diagnosed with mets in their mid-40s who have kids in elementary school that don't understand why daddy is grumpy and won't play with them anymore.

SJO,
That's a lot of great points. In our comments on evaluation there is this statement:

Optimize pain control or other symptom support and encourage engagement with professional or community-based resources, including patient advocacy groups.

We know what to do to treat advanced prostate cancer with full understanding of the co-morbidities of treatment. But it is outside the scope of this document to get into the details of medical or complimentary and alternative medicinal approaches to easing the mental aguish that comes with it. But it certainly was discussed but it was not easy to put together a consensus statement. The need for anti-depressing drugs actually begins all the way back to prostate cancer diagnosis. Many do not deal with the "C" word well. But from my experiences outside of this panel I can say that every physician I have worked with has concerns about the mental well being of their patients. Some are better than others but none ever felt good about depression or side effects like hot flashes, weight gain, bone weakening, etc. Each patient is different and the science about what to do as these situations arise is really weak. Physicians receive training about co-morbidities caused by treatment and diagnosis but it is highly insufficient in my opinion. And it may be asking too much as well of them. Causes of depression may be strictly the diagnosis and treatment, but diagnosis and treatment may also act as amplifiers rather than cause. I was part of the decision to include the mention of community based resources, like HealingWell, to broaden thinking if the physician is challenged by what to do in these scenarios. I can tell you I get more done on this side of the discussion in the support groups than what the doctor can do in the examination room and I have been passionate about that since coming here the first time in 2006. My anxiety was tremendously eased by talking to my peers, learning methods that worked for me on depression, hot flashes, etc. At one point I felt enough depression when my mother died of cancer while I was in ADT that I approached my physician about taking an anti-depressant. He offered but also coached me, to work hard at knowing it was being enhanced by the ADT. And that was all I needed. But for others that's simply too simple.
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alephnull
Veteran Member
Joined : Dec 2013
Posts : 2482
Posted 6/26/2020 10:23 AM (GMT -8)
Thanks for the info Tony!

It's great to hear from you again!

Question: What is the difference between BCR (BioChemicalRecurrence) and nmHSPC (nonmetastaticHormoneSensitiveProstateCaner)??
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/26/2020 11:05 AM (GMT -8)

alephnull said...
Thanks for the info Tony!

It's great to hear from you again!

Question: What is the difference between BCR (BioChemicalRecurrence) and nmHSPC (nonmetastaticHormoneSensitiveProstateCaner)??

I hope you are doing well, alephnull. Here's what's in the test. I'll add to it.

Biochemical recurrence is a rise in PSA in prostate cancer patients after treatment with surgery or radiation (PSA of 0.2ng/mL and a confirmatory value of 0.2ng/mL or greater following radical prostatectomy and nadir + 2.0ng/mL following radiation). This may occur in patients who do not have symptoms.

HSPC refers to prostate cancer that has either not yet been treated with ADT or is still responsive to ADT as manifested by the absence of clinical progression, radiographic progression, or a rising PSA of >2.0 ng/mL above nadir. This may also be referred to as castrate-sensitive prostate cancer, endocrine-sensitive prostate cancer, and hormone-naïve prostate cancer.


The BCR patient has undergone localize therapy and exhausted these option yet still has a rising PSA and no evidence of metastasis. BCR patients are not recommended to go straight to treatment unless within a clinical trial or the rise in PSA kinetics shows high risk (PSADT of <12mos.)

These patients may become nmHSPC patients if they respond to ADT but continue to show no metastatic disease. In the recommendation in this guideline we outline the possibility of using intermittent ADT.

If that BCR patient started HT and the PSA kinetics show a continued rise in PSA then this patients state is nmCRPC as long as mets are not identifiable.
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steve0
Regular Member
Joined : Dec 2016
Posts : 276
Posted 6/26/2020 11:22 AM (GMT -8)
Tony, Thank you so much...Looking at the chart I would think I am mHSPC. I have so far responded well to ADT. Just had my second shot and PSA went from 1.32 to 0.90 and they are doing genetic testing on me. A few brothers on here had the exact same diagnoses as me and their nodules dried up after three months of ADT... So I am believing the same outcome this time around.
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/26/2020 12:38 PM (GMT -8)
I think alephnull touches a point that I need to clarify and the document does not.

nmHSPC was a 6th state we dropped after peer review in March due to conflicting opinion. We added it to BCR and we had a consensus. That's sometimes how these things get done. In order to become a statement, everyone has to agree.

And I am clearly the one that needs the most explaining to in those panels.

T
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Wings of Eagles
Veteran Member
Joined : May 2013
Posts : 1227
Posted 6/26/2020 12:48 PM (GMT -8)
Tony,
First , Thank you this post, a wealth of info that I will study and come back to you with a question, as soon as I can digest it. I will definitely print it out and share it with my Oncologist.

Also, Thank you from the bottom of my heart for your dedication to us over all these years, that is quite a overall massive number of posts here. I am always reminded of you at the start of our forum post by your sticky tab there-"Long running threads and PC abbreviations". Your Bio is a testament and a testimony to your selfish dedication to all of us here.You are one of my PC Heroes, along with a select few other Guardians of the PC Galaxy out there.

It was an honor to have met you at the PCRI event in Los Angeles I think it was three years ago. Privileged to have been introduced to you and Joel Nowak by Todd Seals (got me a nice photo too!!!) Take care and keep the Faith Brother!!
Wings aka Dan Kasper in So Cal-90 degrees today
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Bohemond
Veteran Member
Joined : Apr 2012
Posts : 1453
Posted 6/26/2020 2:08 PM (GMT -8)
Tony,
Many thanks for posting this. I've added it to my "papers and studies" archive and will come back to it as I continue treatments.
Jim
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Skypilot56
Veteran Member
Joined : Mar 2017
Posts : 1452
Posted 6/27/2020 4:54 AM (GMT -8)
Tony, I just wanted to thank you for your contributions that you have made in the fight against PCa. And to let you know that I added you to the list of my heroes for PCa. Thanks for posting this I just wish I had your knowledge so I could grasp all of it but I'll keep working on it.

Larry
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Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 3117
Posted 6/29/2020 7:45 AM (GMT -8)

Appreciative of the time, research, due diligence, and careful thought that went into this new guideline.

Organized into distinct categories, it becomes a helpful reference guide, and resource.

It would certainly help patients, but I see it also being used by volunteers at cancer resource centers, physician's assistants, & oncology staff members.

I was struck by this thought ...

Think how DIFFERENT this document would have looked 10 or 20 years ago!

Taxotere chemotherapy infusions became FDA approved in 2004. Provenge was approved in 2010, followed shortly thereafter by Xofigo, Zytiga, and Xtandi, in quick succession ... just in the past few years.

I remember reading an article when I was diagnosed in 2013, calling those new FDA approvals, which occurred in rapid succession, as the "GOLDEN ERA" in prostate cancer research & development.

So MANY of us here know the importance of those new developments!

Thank you, also, for your continued ADVOCACY in seeking continued research for new and emerging prostate cancer treatments.

We all know the significance of the pink ribbons worn for the important cause of breast cancer research & awareness in the month of October.

My HOPE is that more and more people will know the significance of the light blue ribbons & light blue shirts worn in SEPTEMBER for prostate cancer awareness, as well.

Education leads to advocacy, and advocacy leads to research. Thank you for your part in that.

Continue to beat the drum ... keep lighting the lighthouse beacon ... and keep SHINING THE LIGHT on this valued cause for our brothers, comrades, and compatriots.

May the "GOLDEN ERA" of prostate research continue!

With sincere gratitude,
CYCLONE ~ # Iowa State University
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Mrs.BD
Regular Member
Joined : Jul 2019
Posts : 93
Posted 6/29/2020 9:31 AM (GMT -8)
Thank you so much!
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