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Surveillance to delay treatment, decision time?

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

I have read numerous books, chatted with many online, met with multiple doctors, talked to a few who have gone before me and I am coming to a place of acceptance that I will eventually have treatment. The critical questions that remain are When and How will I know it is time?
Active Surveillance’s intent is to watch those that may have an indolent disease that may not be the ultimate cause of death, ensuring the window of opportunity is not missed, and delaying the side effects of treatment. 
My Uro considers my case low risk, even with a bit of 3+4, in one core <5%. Now contrasting Klotz and Epstein criteria; I would be a candidate for AS in Klotz model but not Epstein. I believe about 20% of confirmation biopsy upgrade stage and trigger intervention. That also suggests the reminder doesn't get upgraded. 
The researchers/experts in the field talk probabilities and fortunately paint a good picture about long term survivability for AS candidates. And they point out some die from the disease and /or have a more challenging disease to deal with. My summary of the readings that I have done in the last weeks suggests there is a very low risk of AS contributing to dying from PC, with definitive AS regime and clear trigger points. 
What’s the debate? For me, it is less about side effects and more about the risk of surgery. I think the potential risk of surgery is equal to or higher than the risk of dying form PC with low-risk disease. Now that is my feeling, not a fact that I can scientifically prove. However, most of our decisions are informed feeling based. I have a friend who chose RP because the thought of cancer growing in him was not palatable. Now his outcome was great so in hindsight great decision. 
My internal debate can be more accurately described as a narrowing of my view as to the best course for me. I am trying to stay very open to other’s opinions and experiences, even those who think I might be taking a big risk if I stay on AS. All information is important to inform the next decision. 
The next decision is the way I am going to manage this. Increased PSA informed the decision to do multi parametric MRI, which informed the fusion biopsy, which is informing the treatment decision. I am awaiting Decipher results to inform the next decision, which I think will be confirmation MRI / biopsy sometime later this year or early next. 
Some days I feel like I am deciding not to decide but that is not accurate. I am making incremental decisions based on new data and new education. I really feel I am in a gray zone, young enough to have a long life ahead, a cancer that is not in the “very low risk” category, and I believe a great Urologist/hospital (Yale) that will guide and inform the next decision. 
I am attending a PC conference next week led my op Docs/researchers in the field, attending a weekend get away with fellow PC guys and their spouses in a few weeks, should meet with Uro soon to discuss next steps. These steps are all to help inform the decision. What I am clear on is there is no urgency to the “get it out of me” feeling I had the day I was told I had PC. I am throwing a wide net to get information, which I can then narrow through discernment and counsel. I am getting more comfortable with the approach discussed and there are moments of “what if you are wrong?” that concern me at times. 

I welcome any thoughts that may inform my journey. 
Thanks, Denis

GeorgeG
Posts: 127
Joined: May 2017

A high class outfit like Yale should be intergrating all available information such as PSA baseline, doubling time, MRI indications, biopsy core results, free PSA, family history, etc. for AS selection and trigger points. You are a collection of all of those factors. Your attitude about it also matters. My wife and I are both of the mind that if cancer is in there but not likely to be a threat then we leave it in there and move on. Most are not that way is my observation. I can also tell you that we are finally starting to move the needle with regards to PC death rates in the PSA era but I have seen multiple studies that show that in the great majority of cases, at least historically - intervention for PC does not change the outcome significantly in the large numbers (I have my shields up but take it easy on me, I am a grandfather). IOW, treatment does help many but needs to be considered wisely. If you live to 85 you have a 75% chance of dying with but not of PC. We find a lot of them in the modern era but the challenge is to decide which ones need action. I can't make your decision for you but it sounds like you may be arriving at one after a lot of research and consideration. I don't remember all of your information but if I was in your situation and Yale was recommending AS, I would tend to agree but follow it closely.

Good luck and once you decide - own it and know that you made the right choice. Then visualize you immune system getting stronger and PC leaving your body every day. The mind body connection is very strong. Look at a spouse that dies days after their partner of 65 years. It works the other way as well.

George

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

George thanks for a nice response.  I agree with your thoughts. Denis

ASAdvocate
Posts: 113
Joined: Apr 2017

Denis,

After following you on three websites for the past month, I would bet serious money that you will have surgery within the next 18 months.

You talk about AS, but I doubt that you see it as a solution.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks for your thoughts.  We all travel our own journey.  I do not know what the future holds. I will continue to investigate, ask questions and follow my docs lead.  Denis

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Active Surveillance is not for everyone. If you feel lots of stress with AS, you may wish to consider an active treatment.  

It is appropriate to have stress when we are threatened, and a significant percent of those who start active surveillance drop out because of  this stress, and seek treatment.

If stress of AS is too much for you, you might be better off considering an active treatment. 

 I mention the above, since it appears to me that you post an awful lot, ( Iknow that some is for knowledge) but I guess mostly  to alleviate your stress. It's still fairly new to you, but if significant stress continues you might be better off having an active treatment.

AS Advocate and I have followed an active surveillance protocol for many years. In my case, I have confidence in my doc to manage my case; I live with it, and go on with my life. Probably the same with AS Advocate.

Note: I regularly post, not because of any stress, but mainly to help others.

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Thanks, hopeful.  I do find it interesting how folks seem willing to guess how someone else feels based on posts.  Yep, there is indecision in my case as I feel I am still in the fact gathering phase. My discernment process is an active inquiry approach.  I read and I listen and i ask questions.  I also like to summarize my current state.  I have learned over my life that being as real as one can and let others offer insight is the best way to learn and make decisions.  I also find it intriguing that the number of posts causes you to think stress.  No criticism here just interesting.  

My truth today is I am not sure what is the appropriate thing to do at this point so I am going to follow my docs lead, which I believe will be to let this next 6 months or so go by and redo mp MRI and probably biopsy.  I also believe that many on AS are actually delayed intervention, particularly if younger and healthy.  

Thanks for taking time to respond to my post.  Glad you doing well on AS.  Denis

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

I think you did well in researching so that you can pair your doctor when discussing your PCa issues and deciding. You got to such a level of understanding that the possibilities in acting wrongful are minimal. Trusting the doctor caring our case is also important and a big step forward at the time of decision. In the end he will be recommending and you will be agreeing with his proposals. You will have to sign an agreement stipulating that you are aware of the intervention its effects and consequences, relieving him and the clinic of any wrong outcome.

Many here have shared with you their opinions and experiences. So much information may seem confusing but you will reach that final and best decision. I recommend you to involve your family in your judgements.

For those interested in your story and initial diagnosis; https://csn.cancer.org/node/311048

Best wishes and luck in your journey.

VGama

hopeful and opt...
Posts: 2218
Joined: Apr 2009

" I also believe that many on AS are actually delayed intervention, particularly if younger and healthy.  "

I just turned 66 when I was diagnosed, and now am on active surveillance for 9 years. I was and am physically fit, and have no other health issues. 

I am hopeful that I will continue with active surveillance for the rest of my life; many have. Autopsy studies have been done of the aged who passed away and it was found that a large percent of these men died with prostate cancer, not because.

At any rate, the active surveillance has been successful in my case since I lived life during the last nine years, without suffering side effects of active treatments (especially surgery) . During this time technology has improved, so I can consider treatment decisions that were not available nine years ago; I have become very knowledgeable about prostate cancer, and can make a decision in a non stressful manner.

When we are first diagnosed, we as patients are placed in a position of having to choose from various treatments, all having negativitivities. This is very stressful since we have incomplete information, and in a number of cases doctors who have their own interests lead you to poor decisions.

I'm glad  that stress is not stopping you from pursuing active surveillance.

 

airborne72's picture
airborne72
Posts: 274
Joined: Sep 2012

Denis:

I don't pretend to know any more than what I have experienced.  If this and if that thinking will drive a person insane.  You have conducted research, to a level that is personally satisfactory, and you have chosen a course of action.  More power to you!

If I could predict that within 18 months that you would revert to an invasive action, then I would also run out tonight and buy several lottery tickets.  It stands to reason that my cognitive/predictive abilities would prove successful in both venues.  Right?

Good luck my friend.  If divers do it deeper, then what do submariners do?

 

Jim

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Jim thanks, we are deeper and longer, as we don't run out of air!    This journey is

This journey is fascinating.  We all have such passion and need to know that we can defend our position to a point of ignorance.  I include myself in that camp.  I know what I think!   I don't know if my think is right!   However, I know that when I am truly in the inquiry mode, really willing to ask and listen, I have the best shot at making the best decision for me.  I have only one thing to offer others and that is my experience.  Sure I have opinions and beliefs but I must be careful with them, as they may lead someone in the incorrect path.  

I ran the training and education department for a fortune 100 company and rolled out a new customer service program for 10,000 folks.  One of the lessons was about communicating with an upset customer.  Imagine two people on the phone talking to each other.  Now the customer has steam coming out of their ears.  The vision of a big nasty dark cloud is between the customer and the rep.  Trying to communicate through this cloud effectively is nearly impossible.  The key is to diffuse the cloud and then get to business. 

 

PC is a BIG cloud for some of us and we hear and speak through that cloud.  For me, I need to temper my thoughts and posts, really listen for the message others are offering, as I know they only want to be helpful.  I need to wear my thick skin, which is not an issue after 24 years in the canoe club!  

We are all in this together and I really appreciate all responses to my posts, my questions, and my reflections.  I wish we all hit the PC lottery!  Denis

Grinder
Posts: 438
Joined: Mar 2017

My dad was diagnosed with PC and he lived to be 90, and passed away from organ failure unrelated to PC.

My neighbor died from PC.

The difference? My neighbor was in tip top physical condition, so he never suspected what was going on inside. The prostate is a peculiar organ. As far as I can tell it has no nerve endings that transmit pain messages to the brain. The only way to know trauma is occurring is the tissues outside of it.

My point is, you have already beaten the odds just my keeping careful track of your prostate condition. My neighbor didn't even think about prostates until things were beyond control. But now you are way ahead of the game because you can track its progress and take measures IF and when they are necessary.

Also, this is just my opinion, but you cannot visualize disease away. You can have a positive mental attitude that reduces stress and that certainly assists your immune system. But that is my opinion, and if it works for you, fine. Hermann Hesse popularized shaping reality through visualization. It's possible that it creates a placebo effect, but I would not bet my life on it... just my opinion.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

I liked the reference to Herman Hesse, Grinder.  It somehow or other reminded me of another bit of philosophy from history: The Dilemma of Buridan's ***.   The story is believed to be older than Aristotle, but get refreshed periodically.  An *** is by chance tethered between two identical piles of hay. The donkey can get as easily to one as to the other; there is no difference.  The donkey studies each pile long and hard, and can find nothing better about the one than the other -- they are both very reasonable choices.   Unable to decide, he starves to death where he stands.

 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

On of my first times as the Officer of the Deck, onboard a nuclear submarine, I was about to take on a tough situation.  It involved going to periscope depth in rough seas, a particularly challenging and possibly dangerous situation.  I was pacing on the conn and the Captin was sitting in his chair and he said, 'Denis you are great at deciding not to decide!"  I took a breath and went to periscope depth.  It went well and I will never forget that lesson!  Denis

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

Denis,

We were in the North Atlantic once, rough stuff. The XO had done mostly Pacific Fleet stuff, and told us once they were coming to PD under a typhoon and the boat started rocking at 150' down !

I obviously cannot say when or where, but we were within 100 feet of being run over by a monster cargo ship coming up once, well over 900' in length.   It would have possibly never known it sent us to the bottom if it had hit us.

You will decide correctly. Knowing it is an issue will assist in resolving the issue,

max

Grinder
Posts: 438
Joined: Mar 2017

I wish I had some cool submarine stories to tell. Still amazed that guys can tolerate that bizarre existence. I wouldn't make a good pilot either... Motion sickness. Or an astronaut... guess I'm just a landlubber.

Maybe I could buy some stories from Cosmo Kramer. Laughing

 "You are great at deciding not to decide"... Good one. And a good description of the AS strategy.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3258
Joined: May 2012

Grinder, the average submarine officer sounds about like Ben Stein (the economics writer, who did some acting, as in Ferris Bueller's Day Off).  

The best officers were always the ones who could run an emergency while still sounding like they were half asleep, "nothing to get excited about here guys."  Think of Stein doing his Clear Eyes commercial and you have it perfectly.  

Clear Eyes:  https://www.youtube.com/watch?v=RcH-3d-BZn4

I'd trade 10 sub stories for any 1 thing Kramer ever did.

denistd's picture
denistd
Posts: 596
Joined: Apr 2009

Denis, I have been on AS since 2014, I am still at gleason 6. I have another biopsy scheduled for October, will see then. I also have only one N in my name, regards, Denis

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Hi one N, Denistd,  I hope it all goes well. I have not met many one ns in my life.  You probably know our name means, "lover of fine wines" I don't drink anymore but always thought that was a classy definition. Be well. Denis

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