-
 Originally Posted by Another
Not to start another thread about sexism, the assumption if someone opts out of AS they are subcumbing to anxiety does his own advocacy for AS a disservice, imo. There can be legitmate reasons for opting out before the cirteria is breeched. One is simply because a person chooses it for themselves, no reason. Personally I see no inherent value in choosing AS because I met the criteria. There is much more to consider the least of which, imo, is anxiety.
The word that we are playing ping pong over is "anxiety". You have an objection to that being a valid possibility for why men, with no worsening of their pathology, would leave an active surveillance program and have definitive treatment. You believe that they do so only for practical reasons, and that describing them as having anxiety somehow slanders them. Well, fear and anxiety are emotions. And, here we are talking about what motivators could have caused their actions. You can say what you want, but I contend that emotions are a stronger motivator than reason. Don't believe that? Ask any car salesman or politician.
DOB: May 1944
In Active Surveillance program at Johns Hopkins
Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
PSA has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
Hopefully, I can remain untreated. So far, so good.
-
Top User
As I mentioned, I think there is a continuum from reasoning/concern to anxiety. No one leaves AS and treats for No Reason. Some will opt to treat if their G6 burden and/or PSA goes up even though still within AS parameters. Nothing wrong with that. The final weighing of Pros and Cons is done on an internal scale that has emotional springs. It's how we're made.
Djin
69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
7-05-13 TURP for BPH (90→30 g) path neg., 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
Bone scan, CTs, X-rays: neg.
8-7-17 Open RP, neg. frozen sections, Duke Regional
SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
Dry; ED OK with sildenafil |
9-16-17 (5 wk) PSA <0.1
LabCorp uPSA, Roche ECLIA:
11-28-17 (3 m ) 0.010
02-26-18 (6 m ) 0.009
05-30-18 (9 m ) 0.007
08-27-18 (1 yr.) 0.018 (?)
09-26-18 (13 m) 0.013 (30-day retest)
11-26-18 (15 m) 0.012
02-25-19 (18 m) 0.015
05-22-19 (21 m) 0.015
08-28-19 (2 yr. ) 0.016
12-18-19 (24 m)
Avg. = 0.013 |
-
Originally Posted by DjinTonic
As I mentioned, I think there is a continuum from reasoning/concern to anxiety. No one leaves AS and treats for No Reason. Some will opt to treat if their G6 burden and/or PSA goes up even though still within AS parameters. Nothing wrong with that. The final weighing of Pros and Cons is done on an internal scale that has emotional springs. It's how we're made.
Djin
Anxiety as well as other emotions play a huge part of these decisions, along with reasoned thought.
After all, we aren't urologists here, and even those trained in the field can never be certain what the natural history of anyone's disease will be with any degree of certainty.
If I had no internet, and I relied on my 16th edition of the Merck Manual, would I have come up with the same strategy? Would a harder sell job or a nicer staff have been able to convince me to have surgery? If I had different insurance made a difference? A lot of emotions involved, I'd love to think it was based strictly on logic and reason, but that probably isn't true.
Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0
DOB 1956, in Pittsburgh, USA
-
Top User
Originally Posted by DjinTonic
As I mentioned, I think there is a continuum from reasoning/concern to anxiety. No one leaves AS and treats for No Reason. Some will opt to treat if their G6 burden and/or PSA goes up even though still within AS parameters. Nothing wrong with that. The final weighing of Pros and Cons is done on an internal scale that has emotional springs. It's how we're made.
Djin
Very true....just as many stay in AS for decades for questionable reasons, like plain fear of having an operation or radiation. Yet they undergo lots of DRE's, biopsies and have higher than usual PSA anxiety....
We're all wired differently. "To thine own self be true." ~ Shakespeare 
72...LUTS for the past 7 years
TURP 2/16,
G3+4 discovered
3T MRI 5/16
MRI fusion guided biopsy 6/16
14 cores; four G 3+3, one G3+4,
CIPRO antibiotic = C. Diff infection 7/16
Cured with Vanco for 14 days
Second 3T MRI 1/17
Worsened bulging of posterior capsule
Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
Grade Disease 81%, Likelihood of Organ Confined 80%
RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
G3+4 Confirmed, Organ confined
pT2 pNO pMn/a Grade Group 2
PSA 0.32 to .54 over 3 months
DCFPyl PET & ercMRI Scans - 11/17
A one inch tumor still in prostate bed = failed surgery
All met scans clear
SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
Radiation Procitis, and Ulcerative Colitis flaired after 20 years
PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19, .116 11/19 
We'll see....what is not known dwarfs what is thought to be fact 
-
Anxiety can certainly be unreasonable ("irrational" might be a better word), but it can also be an entirely reasonable and justified response to stress.
Irrational anxiety often harms the ability to make correct judgments while reasonable anxiety might actually be the spur to reaching a wise decision.
For example, a guy might be so irrationally anxious about the after-effects of surgery that he seriously considers playing Russian roulette with 4+3 prostate cancer until a reasonable anxiety about the likely consequences of that brings him to his senses.
In any case, there is no such thing as pure logic when it comes to the human mind. Instead, there is an interplay of reason, emotions, biases, convictions, and so forth -- resulting in either wise or unwise decisions.
YOB: 1954
PSA 4.4 -- March 2016
PSA 5.9 -- January 2017
Cystoscopy to assess unexplained episode of severe overnight bleeding from urethra in December 2016; results normal; incident unexplained -- February 2017
PSA 7.7 and PHI 59 -- March 2017
3T MRI of prostate -- April 2017; prostate found to be enlarged (79cc) with two potentially cancerous lesions, one PIRADS-3 and one PIRADS-4 -- the latter in the anterior apex of organ
Fusion biopsy -- August 2017; 14 cores taken, with two measured at Gleason 4+3, corresponding to the MRI PIRADS-4 target location
PSA 7.0 -- November 2017
RALP at Johns Hopkins, Dr. Allaf (highly recommend) -- February 2018
Pathology report upgrades G4+3 tumor to 4+5. One additional cancerous nodule found, G3+4; organ-confined; margins clear, SV clear, LN clear
Continence: One pad for two months, then dry
ED: Resolved at one month with aid of Cialis
PSA <0.1 -- May 2018; Aug 2018; Dec 2018; Apr 2019; Aug 2019
-
Of course anxiety has an impact. My point was unless they say what it is for themselves the assumption that over 190 men left an AS program and the reason is anxiety is a gross assumption about people. It reflects a bias, not an insight into the motivations of the participants in the study.
I have tremendous anxiety concerning my cancer. So much so, I avoided accepting it and taking positive actions to the point of threatening my life. My anxiety worked to keep me in a program of avoidance. It did not compel me to seek treatment. Intervention by a clear thinking doctor made a difference.
One could just as easily have declared most men are driven by anxiety into choosing and staying in AS. Neither view can be assumed to be true without evaluation of the participants in a long term study. At the time, I did not have the developed insight I do now about my behavior around my cancer.
Anxiety is used as justification to underlying sources of behavior. It's a symptom to a source, not the source itself. For example, ignorance is an underlying source. If everything was known including outcomes choosing a successful path appears as relatively anxiety free. Even then chronic anxiety as a justification mechanism will find a way to surface. It's a two headed coin toss for some. Once I moved into treating my cancer my anxiety was still with me and clouding other ways forward.
Learning to distinguish it apart from more useful things and setting it aside had been very useful. A head conversation, "Oh there it is again, thank you for sharing, but no thank you." Accepting it as a chronic condition had given me the power to dismiss it and ultimately disappear it. It is in our resistance to it that it persists for us.
As an example for ASAdvocate, there may be survivor's guilt and the anxiety over it. Why me? Why have I survived and my brothers have not? I have experienced this with my own brothers who's paths are proving more troublesome than my own. It takes strength and persistence to remain with us and share his journey. I acknowledge you for this AS. You are a valuable and often lonely contributor. Thank you.
Last edited by Another; 12-04-2019 at 03:03 PM.
-
Top User
Last edited by DjinTonic; 12-04-2019 at 10:17 AM.
-
Thanks for your ending comments, Djin. I have great respect for you and your contributions to this forum.
I am amazed that one single word I wrote has generated a page of comments.
Truthfully, I only feel lonely on this forum. I also participate in about a dozen others, including 2 AS-only, one non-surgery, several pro-radiation, some pro-other treatment, and one surgery-only. On that last one, the moderator and I have an understanding of the limited situations where my opinion is OK. On the AS groups, my opinions are considered conservative, as there are many real risk-takers there.
No, I don’t spend all my time on these forums. I’ve travelled to 170 countries so far, with more planned. But, there are always downtime minutes in every day.
This is the first online forum I joined, and the one I respect the most, despite being in a small minority. The length of many posts reflects the consideration and knowledge of the FB’s. That is SO different from the “I chose X, and you should too” posts that I often see on Facebook groups.
Lonely? Maybe. But, here by choice.
DOB: May 1944
In Active Surveillance program at Johns Hopkins
Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
PSA has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
Hopefully, I can remain untreated. So far, so good.
-
It's an important discussion, imo. Anxiety is an always present as part of these conversation. And, I thank you for being a part of it.
Last edited by Another; 12-04-2019 at 03:05 PM.
Born 1953
family w/PCa; grandfather, 3 brothers
07-12-04 PSA 1.90
07-10-06 PSA 2.02
08-30-07 PSA 3.20
12-01-11 PSA 5.69 Internist recommends urologist, I say no
05-16-12 PSA 4.76 manipulate w/diet & supplements
12-11-12 PSA 5.20, Health system changes to 3 years on testing
03-07-16 PSA 7.20 Internist adamant on urologist
DRE smooth, enlarged
03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
03-31-16 MRI pelvis w/o dye
05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
Catheter out - 16 days
Incontinence at 6mos is minimal – no pad
Cialis 3x/wk & Viagra on occasion
Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
Erections 100% - 14 months
12-08-19 PSA <0.02, Zero Club 3.5 years
-
Originally Posted by garyi
Another consideration and an interesting read.
Impact of Historic Migrations and Evolutionary Processes on Human Immunity
https://www.cell.com/trends/immunolo...906(19)30210-8
Human evolution has been constantly influenced by pathogens; therefore, a great number of human genes linked to immune functions and immunity-related disorders have evolved along with humans.
Genetic variants that have been under evolutionary pressure can contribute to explaining the differences in the susceptibility to diseases observed across different populations.
The ancestry of individuals from different populations across the globe greatly influences their possibility of developing autoimmune diseases and inflammatory disorders.
A better link?:
https://www.cell.com/trends/immunolo...906(19)30210-8
TY garyi! Fascinating information!!! You obviously prefer high altitude subjects! Going to have to reread a few times to get it distilled down to sea level and then digest and absorb the key morsels.
MF
|
|
|
Reply With Quote