What I learned at the prostate conference

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Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/11/2017 4:48 AM (GMT -6)   
Here are my thoughts and feelings on the PCRI conference.

I attended the PCRI conference for the first time. I was struck by the number of men with advanced disease and pleasantly surprised by the number of men on AS and many with G3+4.
The keynote folks had one theme and that is seeking docs with high expertise. Caution on using someone who is a part time prostate doc, or said differently more focused on all urologic issues. The point was made there are 2000 published papers on prostate annually and there is no way a doc can keep up with all the literature unless they focus.
I was also surprised by the facts that pathologists have a 30% intra and inter-rater reliability error rate, including Epstein. Epstein was asked does he look at all slides that come into JH. He had a tentative answer that if his signature was on it “I should have looked at it” That did not give me a warm fuzzy. One statement, by one of the lead docs, was made that if your trust your Uro and he trusts the pathologist you should also.
One interesting study was done in the UK, protect study, recently reported no sig diff in the 10-year survival rate of a purely random assignment of 1500 men to AS, Surgery, and radiation. They also reported that 40 % of the AS group had intervention within 10 years. That also means 60% of the AS men had no intervention and 60% of the other two groups had an unnecessary intervention.
The presenters were critical of their field from a patient focus perspective and a bias towards their specialty for intervention. Many of the men I met had poor experiences with at least one doctor, some a few. Also, the danger of biopsy was discussed at length. Sepsis is a real threat and I met at least four guys who had it and were gravely ill. Many of the docs were discussing the overuse of biopsy.
Many of the sessions and vendors were more about advanced stage cancer. Not one presentation or vendor or breakout group on surgery. Genomics was discussed a lot and many felt it and gene therapies are the future.
I attended three AS sessions and the theme I gathered from most of the guys was a tug of war between acting too soon and not acting soon enough. However, there were many long term AS guys who said this feeling will pass. Virtually every guy who is new at this had genomic testing like Polaris, Oncotype or decipher. Most of the seasoned guys do 3-month PSA and periodic Doppler ultrasound or t3 MRI. Annual biopsy is on the decline.
PSA doubling time seems to be the big warning sign. There was very little reference to Dr. Klotz’s work in Canada. Bias seems to be the big threat to managing this disease. Bias by docs and patients. We need to be educated on our disease, be assertive in talking with our docs and at some point, trust our docs or if we can’t get another doc.
There was much discussion on diet and exercise. Common themes on diet were plant based, many guys went vegetarian, and low carb and eliminate dairy. Everyone seemed to agree that meat is out.
I found the conference informative and supportive. I am glad I went. I am not sure anything dramatic happened for me. I am more confident in my current state and current thinking. I do believe many men on AS will have an intervention. There was one guy who shared after 7years he had a successful intervention and that intervention was not available when he was first diagnosed, so the AS delay worked in his favor.
It was great to be around a bunch of guys in the same boat (800 attendees) and to have a variety of docs there to explain aspects of this disease. There were about 1/3 of guys with their spouses. It was a good investment and I may go back next year.

NKinney
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Date Joined Oct 2013
Total Posts : 532
   Posted 9/11/2017 5:28 AM (GMT -6)   
Subdenis, it sounds like you made a great decision to attend PCRI this year, and you absorbed a lot. 👍

How are you going to apply your learnings?

-Norm

Post Edited (NKinney) : 9/11/2017 7:36:26 AM (GMT-6)


TonyInVirginia Beach
Regular Member


Date Joined Apr 2015
Total Posts : 104
   Posted 9/11/2017 7:31 AM (GMT -6)   
Thank you for sharing.
DX@55-PSA 0.95
9/2010 BX: 3 of 12 Gleason 7
5/2011: Proton Therapy
PostPT PSA: 7/2011, .58; 1/2013, .61;2/2014, 2.07; 8/2014, 4.8
1/2015: BX 3 were Gleason 9
7/2/2015: Lymph Node Dx. All removed were clear
10/27/2015: Salvage Cryo
2/2016: PSA 4.3
6/2016: Firmagon (7/16,3.79; 1/17,1.44; 2/17,2.38)
2/2017: Xtandi added]
3/2017: PSA .07
4/2017: PSA .01
5/5/2017: AUS implant
7/11/2017: Provenge

BUSMAN
Regular Member


Date Joined Mar 2017
Total Posts : 24
   Posted 9/11/2017 7:54 AM (GMT -6)   
Subdenis,
Thank-you for posting the major items you gathered at the conference. Sounds like a lot of interesting
information.
DOB, 12/1955
PSA, Date
0.5, 2003; 0.95, 2006; 1.6, 2008; 6.6, 11/2016; 6.7, 12/2016 (free PSA = 11%); 5.6, 7/2017
Pca3 = 116 (< 25 normal)
DRE = suspicious ( 11/2016 )
3TMRI , 3/2017 ; 2 Lesions are PIRADS=4 ; Prostate volume 63.4 ml
BIOPSY 4/20/2017;7 of 14 cores positive 15-70% adenocarcinoma Gleason(3+3)=6;Perineural
Invasion in 1. Dr. Epstein confirmed.

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/11/2017 8:27 AM (GMT -6)   
Norm I am adjusting my diet. I am pescatarian and eat dairy. I am going to eliminate dairy and eggs. I am going to lower my carbs and cut back or eliminate fish. I walk the golf course nearly every day of the week and I have restarted my running. I also eliminated artificial sweeteners about a month ago. When we return to Florida in a few weeks going to add yoga as part of my weekly routine (can't walk the golf course where I live).

I also will continue my intense study of the literature on this disease. I meet with Uro in coulple weeks and will confirm that AS is appropriate and what our AS plan is.

And I am going to continue to love retirement. I have a dive trip; planned, a ski trip planned, my wife and I will get away on the trike, and we have our semi annual trip to Hawaii in November. I also will do more bike riding in Florida.

Finally, I plan to be an advocate for prostate awareness, not sure yet exactly how. I know we can impact catching this disease early if we all speak up.

Thanks, Denis
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in lesion, may be overlap All cores less than 30% 8/22/17 - second opinion Yale pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance. Thanks, Denis

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 532
   Posted 9/11/2017 8:42 AM (GMT -6)   
That's beautiful. Take it as a wake-up call, and enjoy the fruits of life to their fullest!

One of the things you probably learned about being an advocate is that it's not merely "catching" the disease early which is important—it's such a ubiquitous disease that actually having a detectable form of prostate cancer is not really such a big deal for most men—the big deal you can help men with is having their head together to make smart, informed decisions about what one does after he discovers that he has PC.

As an advocate helping others learn about the disease, here's a phrase I've used repeatedly in one-on-one conversations: prostate cancer is one of the most common, and least lethal, of all cancers. This clear, concise, factual statement helps others get a much needed sense of perspective.

Back to your case...a solid AS plan will essentially always start with a second, confirmatory biopsy within about a year. You accurately noted from the conference that biopsies are becoming less common/frequent in AS programs, but that 2nd confirmation by either biopsy or mp-MRI (or both) is absolutely key to getting off on the right foot. Once one confirms (2nd confirmation) favorable risk PC, risks of AS are dramatically reduced. (What is becoming less common is the frequency of biopsies after the 2nd confirmatory biopsy as other imaging techniques have become more effectively used in conjunction.)

Looking forward to your update after meeting with your uro in a couple weeks.

Post Edited (NKinney) : 9/11/2017 9:57:52 AM (GMT-6)


garyi
Regular Member


Date Joined Jun 2017
Total Posts : 158
   Posted 9/11/2017 3:46 PM (GMT -6)   
Thank for a most interesting report, Denis.

What specifically, were the reasons that motivated you to cut back or eliminate fish? Anything learned about lean, organic, poultry??
70 years old @ Dx, LUTS for 6 years
PSA's never over 3.0, Now 2.3
Ulcerative Colitis since 1973
TURP 2/16, G3+4 discovered,
3T MRI fusion guided biopsy 6/16
14 cores; G 3+3, one G3+4, Grade T1b
Second 3T MRI 1/17
RALP 7/17 Dr. Gonzaglo The U
G3+4 Organ confined
pT2c pNO pMn/a
Mostly Dry so far

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/12/2017 2:22 AM (GMT -6)   
Gari I was a vegetarian for some years. I have been questioning the safety of fish for some time due to the mercury and farming of fish. Said differently I am not sure I can trust the quality of fish available even if I caught them. There are many pollutants. I was struck by the number of guys that I met who had gone vegan at the conference.

I do suspect, my case for sure, is we all want to do something about our PC. Diet and exercise are something we can control. I have read or scanned numerous books and articles on PC diet and plant based is the major theme. The "how not to die" book which looks at many maladies we face supports that premise.

The notion of protein has always been by worry about plant based diet. But we only need 50 or 60 grams. I shifted to vegetarian about 20 years a go to help fight my family propensity for colon cancer.
When I eat a plant based I feel better. While the science is mixed on what is the best way, my feeling better is good enough for me.

Denis

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/12/2017 2:29 AM (GMT -6)   
NKinney thanks for the thoughts. I think my doc has a planned confirmation biopsy, will find out in a couple of weeks. However, 12 core biopsy sample less than 1% of the prostate. So from a probability standpoint, this is a very unreliable test. I think at the conference it was stated 40% error rate. Clearly, an MRI guided one is better but MRIs have the same error rate. The fidelity of the MRI is the issue, even the new 3T can only see PC when it is a certain size, and biopsies are such a dart throw we cannot count on them as evidence of no progression.

With that said I will probably have one, again because I want to feel I am doing something. The real key s looking at all the evidence, PSA kinetics, DRE, MRI, and Biopsies. I just need to be aware the risk a biopsy offers, deaths do happen. Denis
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in lesion, may be overlap All cores less than 30% 8/22/17 - second opinion Yale pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance. Thanks, Denis

Hope4Happiness
Regular Member


Date Joined Apr 2010
Total Posts : 27
   Posted 9/12/2017 7:28 AM (GMT -6)   
@Subdennis -- I very much appreciate the summary you provided on PCRI conference.

Like you, I've been a pescetarian for more than 10 years now. I've kept fish in the diet mainly to get the hearty omega-3s from wild-caught salmon.

And, like you, given my recent diagnosis and stats, I'm considering AS as the first step. I hope I can handle it psychologically without the letting thoughts of "Man, I know I'm letting something go unchecked" / "There are too many unknowns - just start getting direct treatment!" overwhelm me.
Age 52 at Dx - 8/17 (5th biopsy); MSKCC - NYC
2 /14 cores: Right base medial, G6 (3+3), 1%, linear amt. 0.1mm; Right apex medial, G6 (3+3), 3%, linear amt. 0.5mm
6/17, Pre-biopsy: Prostate MRI (MR PROST PRE TREAT W/O CON) - PI-RADS 3 - no lesions or adenopathy
Prostate size: 6.4x3.4 x3.8 cm; vol. 43 cc
PCA3 = 29
PSA at Dx: 6.19, fPSA = 23%
Currently on MSKCC's Active Surveillance (AS) program

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 532
   Posted 9/12/2017 8:37 AM (GMT -6)   
Subdenis (and Hope4Happiness),

I'd just like to help make clear the point that the risk reduction effects of the confirmatory biopsy are multiplicative...that is, when taken together the long term risks continue to decrease with each subsequent assessment.

I'll help provide you with some reading materials. You will begin to recognize the leading names in the world of Active Surveillance, and you were no doubt exposed initially to some at PCRI. Names like Klotz, Carroll, Carter, Cooperberg...these are some of the doctors who are AS gurus.

Here's a link to "Active Surveillance for Prostate Cancer: A Systematic Review of the Literature" co-written by many of the gurus.

One of the tables shows "Outcomes from confirmatory or first surveillance prostate biopsy" at the leading AS institutions: Johns Hopkins, UCSF, MSKCC, and Univ of Miami. Summarizing:
  • about a quarter of the initially low-risk category men showed an increased grade which was likely due to undersampling, and they likely moved on to treatment. (Separate studies show this profile of men has exactly the same treatment success rate as those with the same profile who go to immediate treatment.)

  • about half of the men had no change in biopsy results, and the 2nd confirmatory biopsy indicated that they should begin following Active Surveillance protocols.

  • but about a quarter of the men showed no cancer in their confirmatory biopsy, largely confirming the truly indolent or incidental nature of their initial findings. Let that sink in. Many peers of these men (like me), with these very same initial findings of low-grade cancer, might have otherwise leaped directly without any other follow-up into an aggressive, irreversible treatment laden with onerous side effects. These men need to continue to monitor closely, but treatment in the immediate term is completely off the table.


I mentioned earlier that in some AS protocols, the 2nd confirmatory step may not even be a biopsy. More recently, for selected patients, Klotz is prescribing a mp-MRI and if results are negative, biopsy is optional. See HERE.

Subdenis and Hope4Happiness, information is key to building your understanding and confidence in the AS protocols. Read on!

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/13/2017 2:33 AM (GMT -6)   
Hope, first your name is the key, we have lots to be hopeful for! My biggest battle is projecting the future.Wonder why I don't project happy outcomes???? Just the facts ma'am! I have found a great Uro at Yale and I am going to follow his lead. He told me he is conservative and that AS is a good choice for me. We did order a decipher tests to give one more piece of info. DOn't know if you read Klotz book but it is a good one. Hang in there and stay hopeful! Denis
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in lesion, may be overlap All cores less than 30% 8/22/17 - second opinion Yale pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance. Thanks, Denis

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/13/2017 2:35 AM (GMT -6)   
Nkinney thanks. At the conference, I think they aid MRIs miss 30 or40% as do biopsies. Yale's protocol is a confirmation biopsy and if my doc wants to do that I will agree. Denis
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in lesion, may be overlap All cores less than 30% 8/22/17 - second opinion Yale pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance. Thanks, Denis

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 532
   Posted 9/13/2017 5:30 AM (GMT -6)   
Subdenis said...
Nkinney thanks. At the conference, I think they aid MRIs miss 30 or40% as do biopsies.

You're welcome.

The mp-MRI statistic is not as straight-forward as one might imagine/hope. This imaging technique (which looks at the whole prostate; there is no undersampling similar to the TRUS biopsy) is intended to overlook low grade PC while identifying the probability of high grade patterns...do you see, therefore, the benefit for men initially diagnosed with low grade PC? The low-grade is fine, they want to know if there's high-grade which was undersampled. But the MRI results may then come back with no, or low probability. If it came back with no findings, did it "miss" the known low grade PC? Or did it successfully determine low probability of high grade PC. Some may interpret the results strictly one way or the other. [Perhaps too much/confusing info for now.]


Subdenis said...
Yale's protocol is a confirmation biopsy and if my doc wants to do that I will agree. Denis

I saw your note above that this doc confirmed to you that he tends to pursue a "conservative" approach when appropriate. You've done well finding a doc that matches your needs. Congratulations. With that in mind, if it were me (now with 8+ years PC experience) I would do exactly what you have written..."if he wants...I will agree." Trust, but verify.

Norm

Post Edited (NKinney) : 9/13/2017 11:00:54 AM (GMT-6)


Break60
Veteran Member


Date Joined Jun 2013
Total Posts : 1729
   Posted 9/13/2017 7:57 PM (GMT -6)   
I love fish and dairy . Are u saying that just guys on AS should cut those out or anyone with PCa including those like me who have had multiple treatments and recurrences?
I know of no benefit from diet for advanced PCa .
Bob
DOB January 1944 (now age 73)
PSA: 8/12 2.7; 5/13, 6.6 (actually double due to finasteride)
7/13 (age 69) Bx GS 4+5=9 (Epstein); 2 of 6 cores, 10%, 40%; stage Pt1c
9/13 ORRP, GS 4+5=9, BLSVIs+, margin+ (4mm,G7), EPE, 10 Nodes resected (clear); stage upgraded to pt3bN0M0
PSA: 11/13 0.1; 2/14 0.2; 5/14 0.3
6/14 SRT by IMRT/IGRT, 68.2 grays/38 Fx to prostate bed, ADT (6 months Lupron)
PSA: 9/14 to 8/15: <.1, <.1, .1, .3, .7, 1.2
9/15 MRI, CT-PET finds two iliac lymph nodes suspicious for PCa; organs and soft tissue clear ; Start ADT3 plus plus Metformin, Cabergoline, Estradiol patch, Prolia , Vitamin D3, calcium. IMRT 75 grays/50 Fx to pelvic lymph nodes. Stopped ADT 11/16.
11/15-5/17: PSA rises from .03 to 2.3.
5/17: F-18 Fluciclovine (axumin) PET/CT scan finds abnormal uptake in intertrochanteric region of the proximal right femur compatible with skeletal metastasis measuring approx. 9 mm. No other adverse findings. Restart ADT3; start monthly Xgeva
6/17 SBRT, 30 grays/ 3 Fx to femur met.
7/17 PSA 0.3, T 3.0

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 94
   Posted 9/14/2017 3:44 AM (GMT -6)   
Break60, the evidence is weak as to the role of diet but the wisdom of most sources and experts is the healthier our bodies are the better. The commercialization of dairy and poultry has introduced many bad things to the production of these products. So will it help? I am not sure and I feel good about taking care of my body through diet and exercise. Be well. Denis

ardeee
Regular Member


Date Joined Sep 2013
Total Posts : 57
   Posted 9/14/2017 11:33 PM (GMT -6)   
The PCRI break-out session on how to best use the internet for PCa education is now available for viewing with PCRI blessing.The recording and slides here:
https://www.ancan.org/recorded-calls.
Look under 'Plenary Sessions & Special Topics'.

Much thanks to Jake Hannam who patched together the slides and audio because I forgot to share my screen on the GtM recording.

Onward & upwards, rd
http:/ancan.org
www.medafit.org

RichardNY
Regular Member


Date Joined Jan 2017
Total Posts : 55
   Posted 9/15/2017 9:26 PM (GMT -6)   
ardeee,
Thanks for posting that link.
I plan to listen to those topics.

I notice that the Answer Cancer Foundation who posted that page also has a youtube channel.

/www.youtube.com/channel/UCOX221U27DhVDCe3Ozz2rDg
Age 75, Diagnosed at 74
PSA 10

CyberKnife completed May 26, 2017.
The radiation dosage was 36.25 gr ( 5 x 7.25). I think the margin was 5 mm + 4 mm laterally.

Gleason: 9 (4+5), one 7 (3+4), several 6 (3 +3)

DRE nothing detected
MRI & Bone Scan: nothing detected outside of prostate.

Going with SBRT/CyberKnife
+ 2 months hormone deprivation [Eligard] before SBRT and 6 months after.
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