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Active Surveillance: Why it would not have worked for me!

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Posted 11/20/2013 2:57 PM (GMT -5)
Jim agree and thanks for clarification. We are in same boat.

Allen - good info.

Casey, it's "a" message, not "the" message.it's not a message coming down on a tablet from mount sinai (no pun intended). And I don't understand why you continue to want to call cancer something else only because it helps improve the chances of pushing "a" certain message.
Posted 11/20/2013 3:52 PM (GMT -5)

John T said...
Davidg,
I agree that patients choosing AS are wired differently than those seeking immediate treatment. Fear of death over rides their fear of side effects from treatment regardless of the probabilities of either. As I posted previously the neural networks are developed over a life time of experiences, and may be as high as 40% genetically predisposed.
I would argue that a simple personality test along with some questions about cancer in general could predict a patient's decision on choosing AS in the 85% range.
This predisposition can also be changed over time with a broad education program about the benefits of AS. We can already see the change in attitude over the last 5 years among doctors and this will eventually filter down to patients.

In my case alone it wasn't because of a fear of death. Won't bore you with my reasons again but I think if there is any merit to this "wired" discussion the variables would be multiple and more complex and pragmatic.

They give us a survey to fill out to predict our response to potential SEs so yeah, they could probably provide one on personalty traits and what we are suited for. It's funny, the high school my son goes to does this and then tells the kids what type of college/university would suit them both academically and as far as environment/culture goes. Much to my dismay my son got Dartmouth. On the other hand he also got Unv of Michigan and Univ of Wisconsin/Madison which would be much more fun for him.

As far as education goes, it can go both ways. There is sound scientific proof to suggest certain candidates would do fine/better with any treatment too.
Posted 11/20/2013 3:56 PM (GMT -5)
I don't know if propensity to choose AS is nature or nurture. Like most issues that ask this question, it's probably a combination of both. I've met "worrier" types, often men who are perhaps more emotionally-driven, who say things like "I just want to get it out of my body." But sometimes those same "types" arrive at a different place because "I can't live with thinking that I will be permanently plagued with incontinence and ED." Sometimes fear and anxiety based on their experience with other kinds of cancer drive the decision.

I agree with Casey/Zeitman that innate personality is not destiny and anyone can be trained to be less reactive and more thoughtful about the decision. That decision ideally involves a lot of soul-searching about what is best for him based on who he is and what he values. It also involves learning the facts. It is the kind of decision that seems ideal for "shared decision-making" - the patient needs to learn the facts and probabilities of various outcomes from the doctor, and the doctor needs to learn what is really important to the patient.

I sat down with a psychotherapist who helped guide me through an exploration of what was consciously and unconsciously driving my thoughts and feelings about my diagnosis and treatment. He also taught me to practice Mindfulness, which allowed me to get away from the constant unproductive ruminations about what could happen under imagined future scenarios, and into dealing with things as they are. In my ideal world, everyone would be armed with these tools before making a decision.

- Allen
Posted 11/20/2013 4:03 PM (GMT -5)
I don't understand why we are automatically attaching emotional attributes to those that might shun AS. Labeling one as thoughtful and another as reactive. Isn't that unfair?

Can't it be a very rational and logical perspective for that person?

I would think that in order to have this discussion fairly and accurately, one/all would have to rid themselves of their personal bias first.

Allen - in my family almost everyone does psycho analysis. They do so for the same reasons I play soccer and tennis competitively, they enjoy it. My father practices Mindfulness. I agree there are many advantages to an aging person to embrace this, it's certainly functional, but there are also a lot of disadvantages in my opinion. For instance, why do you assume that such ruminations would be unproductive for everyone?
Posted 11/20/2013 4:04 PM (GMT -5)
DG, what makes you think your son won't have fun at Dartmouth -- the prototype for "Animal House"...LOL!

TA, perhaps when I used "wired" I was being too literal. Genetic and acquired personality traits is more what I mean. Of course there are exceptions, but in general I also think a simple personality test would be quite predictive of treatment choice....

Jim
Posted 11/20/2013 4:16 PM (GMT -5)

davidg said...
For instance, why do you assume that such ruminations would be unproductive for everyone?

I was using the word "rumination" in the psychological sense of going in mental circles over the same territory, which by definition is unproductive. In states of depression and anxiety especially, we all have a tendency to waste a lot of mental energy going around in circles. It is like repeating thoughts and feelings in an infinite loop. I find it exhausting. Practicing Mindfulness doesn't stop it, but it does help me become aware of it more quickly, acknowledge what I'm doing, and perhaps gently let it go in favor of more useful thoughts and feelings.

- Allen
Posted 11/20/2013 4:17 PM (GMT -5)
Jim, I like to tell my kids and especially my wife that I might be the dumbest in the house, but I'm still the only one who went to an ivy league school. I'll lose that line of defense when we mess with each other at dining table if he were to end up there. And then there is the sports... everyone I know who went to university in Madison says it was the time of their life, a perfect utopia for college kids. I want him to have fun. I don't think the difference in undergraduate education will matter that much if he intends to go to Grad School so I hope he picks a place where he can have the time of his life. It's a great American rite of passage in my opinion.

Seriously thought, the high schools here have this online system available to parents called "naviance" ( a guidance website) where they literally tell you what your child's personality is like based on testing, discussions with guidance counselors, etc. We looked at my son's recently and these administrators nailed him perfectly. They didn't tell us anything we didn't know, but they managed to tell us everything we did know. We were rather stunned at how accurate it was.Granted they've spent 3 years with him and most patients do not spend that much time with a doctor, but clearly a personalized identikit and how it would apply to treatments (including AS) would seem doable.
Posted 11/20/2013 4:23 PM (GMT -5)

Tall Allen said...

davidg said...
For instance, why do you assume that such ruminations would be unproductive for everyone?

I was using the word "rumination" in the psychological sense of going in mental circles over the same territory, which by definition is unproductive. In states of depression and anxiety especially, we all have a tendency to waste a lot of mental energy going around in circles. It is like repeating thoughts and feelings in an infinite loop. I find it exhausting. Practicing Mindfulness doesn't stop it, but it does help me become aware of it more quickly, acknowledge what I'm doing, and perhaps gently let it go in favor of more useful thoughts and feelings.

- Allen

I understand you and like what you're saying. That's absolutely the case for someone like my father. My mother on the other hand finds it rather cathartic to do so and will tell you how productive it is for her. She'll tell you her spirituality has a lot to do with that and my dad's lack of spirituality a lot to do with his.

I sometimes feel my dad (for example) is numbing himself to reality. He sure seems happier since he started, however.
Posted 11/20/2013 4:31 PM (GMT -5)
 If I was diagnosed today and, knowing what I have learned from this site, it is likely that I would be embarking on an AS protocol.

yeah, if. if you knew it wasn't going to kill you you might have done nothing.  sure.  okay.

ed

 

 

Posted 11/20/2013 4:54 PM (GMT -5)
I certainly can't hold myself up as a paragon of calm rationality. I struggle with my knee jerk reactions at times. It makes me irrationally grouchy, for instance, when we are having a debate here on the forum and the person who has taken the other side assures me that recent advances in psychotherapy can cure my point of view.
Posted 11/20/2013 9:40 PM (GMT -5)
Ed, I certainly do not consider AS "doing nothing". Dude, you need to be careful about projecting your own feelings and decision rules onto other people. All of us have different perspectives and I suggest you respect that.

Jim
Posted 11/20/2013 9:44 PM (GMT -5)
Jim -- hindsight calls aren't very helpful Jim.  I suppose you were one on the few who felt you were overtreated or didn't know? 

ed

 

Posted 11/20/2013 9:48 PM (GMT -5)
Clanda, Curious to know if you had a 3T MRI. If not it might have identified more cancer then the biopsy. I have been on AS for over a year and a half. New methods of identifying the PCa are being refined like the MRI guided biopsy and Gene testing.
The MRI guided biopsy has a significantly higher success rate of finding the PCa then the standard TRUS biopsy. Also new treatment methods are becoming more accepted like focal ablation.
Posted 11/20/2013 10:05 PM (GMT -5)
To young,

You ask a good question. The answer is Yes, as Tewari required it. Obviously he used it to both his and my advantage in performing my RALP as opposed to my using it as a decision making tool.
Posted 11/20/2013 10:36 PM (GMT -5)
Ed, I am not saying that at all. What I AM saying is that I suggest you refrain from thinking that you know what I would or would not do in any situation. You have no clue about my mind set and any suggestion that you do is highly presumptive and likely incorrect.

Jim
Posted 11/20/2013 10:44 PM (GMT -5)
okay Jim. 

ed

 

Posted 11/20/2013 10:50 PM (GMT -5)
There is a certain risk that must be accepted with following AS. But it is not as if it is one risk versus no risk - There are also risks with treatment. It all depends on weighing the risks and playing the odds.

As was said earlier, following AS is not doing nothing - There is constant monitoring and fairly good chance that advancing cancer will be detected. Generally 3+4 is considered the time to change strategies but it is not usually considered "advanced cancer". Probably it would have been picked up within the next couple of years. Would that couple of years make a difference in life expectancy - maybe or maybe not, but you would also have a couple more years before having to deal with surgery.

I do agree that people who choose AS over more conventional treatment are probably wired differently. I knew it was my preferred way to go almost from the start. Whereas I can tell from the comments of some men that they consider it a couple of steps away from lunacy. I can't help but thinking though, that some men, either consciously or unconsciously, put it in rather black and white terms of "dying or not dying". We are all going to die.
Posted 11/27/2013 3:57 AM (GMT -5)
After reading some of the blogs, it has me seriously concerned about continuing with AS., I'm a 63 yr.old with known BPH & rising psa levels. 08/11-5.14, 11/11-4.82, 01/12-5.43, 09/12-6.93, 01/13-5.17, 5/13-5.06, 11/13-6.85. I was referred to an Uro in 2011, DRE normal, had a T3 MRI 11/12 results were
prostate vol. 55.9cc's., everything is normal except for a suspicious area 2.4cm in the mid gland level.
1st biopsy 02/13 dx with 2 cores out of 10, RML and RBL less than 1mm convention microacinar, gleason 3+3 =6, no pca in the 2.4cm suspicious area. Uro recommends AS., but another MRI ordered 03/13., the 2.4cm suspicious area still remains, everything else is "unremarkable"
After a psa rise in 11/13 to 6.85 another biopsy completed, DRE normal, this time 13 cores taken with 3 from the suspicious area, no pca in that region found, now only 1 core with pca, less than 1mm in the RML nothing this time in the RBL.
My Uro strongly recommends for me to remain on AS.
With the above results I probably should remain on AS however from many blogs on this and other threads on H.W. how can one be mostly assured that the biopsy hasn't missed anything and that the
gleason score is also incorrect as many post RP results raise that score, perhaps I'm one of those individuals that is not wired to remain on AS. sure wish I knew positively that I am making the right decision.
Posted 11/27/2013 5:36 AM (GMT -5)
tak06,

Boy, I know where you're coming from. You've read my story and it is MY story, yet it is a cautionary one and you may have a sense that it may also be relevant to you. You may know if you are wired for AS. I thought I would have been until I was actually diagnosed and objectively reviewed my situation. If the thought of years of continuous AS is something you believe you can deal with, then that's one thing. If you already sense that this is not something you want to do, that's another thing. While I will never suggest the course that anyone should follow, there will be others with much more knowledge than I who will feel much more confident in helping you reach a decision. I know where you're at. What ever decision you make, really wrap your thinking around it and make it your own. Whatever you decide, realize that you did the best for yourself at that moment based upon WHO YOU ARE. Best of luck!
Posted 11/27/2013 6:04 AM (GMT -5)

tak06 said...
After reading some of the blogs, it has me seriously concerned about continuing with AS., I'm a 63 yr.old with known BPH & rising psa levels. 08/11-5.14, 11/11-4.82, 01/12-5.43, 09/12-6.93, 01/13-5.17, 5/13-5.06, 11/13-6.85. I was referred to an Uro in 2011, DRE normal, had a T3 MRI 11/12 results were
prostate vol. 55.9cc's., everything is normal except for a suspicious area 2.4cm in the mid gland level.
1st biopsy 02/13 dx with 2 cores out of 10, RML and RBL less than 1mm convention microacinar, gleason 3+3 =6, no pca in the 2.4cm suspicious area. Uro recommends AS., but another MRI ordered 03/13., the 2.4cm suspicious area still remains, everything else is "unremarkable"
After a psa rise in 11/13 to 6.85 another biopsy completed, DRE normal, this time 13 cores taken with 3 from the suspicious area, no pca in that region found, now only 1 core with pca, less than 1mm in the RML nothing this time in the RBL.
My Uro strongly recommends for me to remain on AS.
With the above results I probably should remain on AS however from many blogs on this and other threads on H.W. how can one be mostly assured that the biopsy hasn't missed anything and that the
gleason score is also incorrect as many post RP results raise that score, perhaps I'm one of those individuals that is not wired to remain on AS. sure wish I knew positively that I am making the right decision.

Tako6, if you had such reservations about any other form of treatment, people here would recommend to you that you talk to various specialists in the field and an oncologists so that you could cover every possible form of treatment and get second opinions on slides and procedures. They would urge you to get educated abut all alternatives before making your mind up.

I personally believe that if one isn't wired for AS then it's simply not his cup of tea. Living in such doubts and anxiety defeats the purpose.

That said, there are some AS programs in the country that are far superior to your average AS programs. They can determine, according to some, with a 95% accuracy the extent of tumor and aggressiveness. With AS it is critical that one follows the program diligently and that the program make use of the tools that are available but apparently not as widespread as desired. A good person to talk to about proper AS programs and tools is John T.

Best of luck. Either way, your cancer seems to be one that affords you multiple management and treatment options.
Posted 11/27/2013 1:36 PM (GMT -5)
tak06-

You've had a biopsy, and an MRI-guided biopsy confirming an insignificant amount of prostate cancer. If you track your PSA over time and have another biopsy in a couple of years, and perhaps once in a while after that, you'll be safe, as your doctor has assured you. If something starts growing, you'll certainly catch it in more than enough time to treat. So safety is not the issue. The issue is your comfort in living with it.

Let me ask you a question -- if your doctor had called it a pre-cancerous condition rather than a cancer, would you be equally concerned?

- Allen
Posted 11/27/2013 2:04 PM (GMT -5)
Tak,
With a 55 cc prostate the psa from the tumor is about 1 point, which is insignificant. Also the MRI identified the location as mid gland, the most favorable location for a tumor. I would say you are on pretty safe ground with a continued AS program. Your psa doubling time is also way above the three year cut off for AS which indicates a very slow growing or stable cancer. You have four data points, slow rising psa, an MRI, low psa density, also a biopsy reflecting low risk cancer, all are consistent with an indolent type of cancer. For a 65 year old man there is no survival benefit in being treated for a low risk cancer. With those confirming stats you have little to worry about unless something changes drastically in the future.
Posted 11/27/2013 7:42 PM (GMT -5)
Thank you all so much for all your input, I just love this Forum site and the knowledgeable people on it.
Appreciate your analysis John T., I'm going to continue with AS because that's basically what my Uro. told me also.
Posted 11/27/2013 7:58 PM (GMT -5)

Tall Allen said...
tak06-

You've had a biopsy, and an MRI-guided biopsy confirming an insignificant amount of prostate cancer. If you track your PSA over time and have another biopsy in a couple of years, and perhaps once in a while after that, you'll be safe, as your doctor has assured you. If something starts growing, you'll certainly catch it in more than enough time to treat. So safety is not the issue. The issue is your comfort in living with it.

Let me ask you a question -- if your doctor had called it a pre-cancerous condition rather than a cancer, would you be equally concerned?

- Allen

I see your point, I would not be concerned had the Dr. called it a pre-cancerous condition. I suppose with regular check ups., I should have time for treatment if the need arises.  I hate those regular biopsies though, but I realize it has to be done.

Posted 11/27/2013 8:29 PM (GMT -5)
tak06,

I am glad to hear you sounding so "up beat" now that you've made YOUR decision to stick with AS. Now go on and live your life to the fullest (see, I can give advice).

Best of luck to you!!!
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