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Posted 3/17/2017 4:50 PM (GMT 0)
Looks like I've found a program that will be a good fit.
Some backround:
I live in the Nashville Tn area and was diagnosed last year with three cores of low grade Prostate cancer (3+3) at Vanderbilt. Since I didn't meet its criteria I was not offered the option of active surveillance but rather advised to undergo surgery ASAP. Upon self study (and in large part thanks to websites like this one), I realized I have options and after finding no such luck locally, reached out to NorthShore in Glenview IL and am now a participant in their active surveillance program. I have family in the area and routinely visit, so distance isn't an issue.
I have an MRI guided biopsy scheduled in March, (which will be my second).
My latest PSA came back 3.7 which is about where it was two years ago.
I realize my situation can change at anytime, but I'm grateful for whatever time I can be side effect free.
Posted 3/17/2017 5:09 PM (GMT 0)
I'm happy you have found a treatment plan that makes sense to you given your current diagnosis.

I live near Glenview, and am a patient of the North Shore Univ. Health System, although not for my urology care. In my opinion, North Shore is a well run health care organization.

Good luck and keep us posted.
Posted 3/17/2017 5:16 PM (GMT 0)
Glad to hear that you took it upon yourself to learn a bit more about this disease, and to understand for yourself (as it is for many men) that immediate, drastic, aggressive treatment may NOT be the best choice. A lot of guys just skip the step of learning more before they leap from the cliff...you are to be congratulated for keeping a level head.

good luck!
Posted 3/17/2017 7:08 PM (GMT 0)
Glad you didn't rush into anything. Do your research and feel comfortable with your treatment decision. When I was diagnosed my Dr. suggested surgery or radiation. That was 5 years ago, Still on AS.
Posted 3/17/2017 7:50 PM (GMT 0)
That sounds like a great plan.

Hang in there,
Andrew
Posted 3/17/2017 10:58 PM (GMT 0)
Good Choice in my opinion, Wish I was a 3+4 instead of a 4+3. AS would have been a real consideration for me.
Perry
Posted 3/18/2017 5:36 AM (GMT 0)
Good for you! I have been in Johns Hopkins' AS program for eight years. Best choice possible for me.

The key to your most successful AS experience is regular testing, including new types of tests as they become available.

Good luck to you.
Posted 3/18/2017 1:36 PM (GMT 0)
Thank you everyone.
I will update as needed and hopefully this thread will provide a small measure of helpful info for others.
Posted 3/19/2017 12:43 AM (GMT 0)
Robertmp,

Yesterday, I was at a doctor meeting with a patient. The doctor made a recommendation that the patient felt uncomfortable with. The doctor replied, "I'll do whatever you decide, and I'll try to do the best I can with whatever you decide." The patient was so amazed by that that he reconsidered and went with the doctor's recommendation.

I post this anecdote because it is the opposite of your experience at Vanderbilt. Clearly, a doctor can't give you a treatment that he believes will harm you, but in the case of active surveillance for low risk PC, there are no studies that suggest any harm to that approach. He should have said, "it's not the optimum, but we'll track you especially closely." It saddens me that there are still doctors who take that paternalistic approach. Kudos to you for having the courage to take charge of your own health decisions.
Posted 3/19/2017 2:08 AM (GMT 0)
Boy I'll say, that's quite the opposite of paternalistic...what would you call it...patientistic? smile Wherein the patient decides what treatment is best...that's not even "shared decision making". But I suppose the patient in question somehow thought he did know best..but decided he didn't when they doctor agreed?
Posted 3/19/2017 2:46 AM (GMT 0)
Sheepguy-

You always make me smile. What you don't get (and perhaps never will) is that there is no one best treatment- there is only the treatment that is right for a particular patient. There are always options and there are always unknowns. Even the largest RCT in the world never predicts for the individual. It is the opposite of paternalistic, and it is called shared decision making. The patient listened to the doctor's recommendation, the doctor listened to the patient's reservations and the features of the treatment that he could and could not live with. Based on that, they came to an agreement. That is how it is supposed to work.
Posted 3/19/2017 3:01 AM (GMT 0)
Robertmp......nice work. Got a great plan with a doc that agrees.



The only caveat I would add TA is what would otherwise be a great plan, with a provider that's not 100% all in...1st choice....it CAN nag some....."Even though my doc is accommodating, I'm still going against this learned man's best judgement". Not ideal, not that it can't be done. Just takes a REALLY strong constitution to override the experts.


OP.....done good. Knew what was best for you and found a doctor that felt the same. Cool beans..


TA....on further reading.....you ARE describing where the doctor sees that the patient's plan isn't unreasonable.


When I had my lithsotripsy....my uro knew my grave concerns about more instrumentation on a stricture that had already been dilated once. I DID NOT WANT A STRICTURE THAT NEEDED CONTINUING INSTRUMENTATION. He knew how serious I was about this. He came up with the idea of letting this kidney die....rather than another dilation to get a stone (he was serious, giving me my options, no judgements). That's when I knew I could trust this man.

He was giving me my options with no judgements.

Happy ending. stricture had not closed up when he went in to check it... a blasted that rock
Posted 5/1/2017 7:32 PM (GMT 0)
Update:
3T MRI completed.
No evidence of Prostate carcinoma. No lymphadenopathy, bone marrow normal.
Prostate gland enlarged @41cc and mildly protruding into base of urinary bladder.

Confirmatory biopsy in three weeks.
Posted 5/1/2017 7:42 PM (GMT 0)
Winner!
Posted 5/1/2017 7:44 PM (GMT 0)
Certainly good news!

BPH often shows as that kind of protrusion from the TZ into the base of the urinary bladder (even when the outside volume of the prostate isn't all that large). It can cause problems in peeing. Proscar or Avodart may be helpful and might reset your baseline PSA so that it becomes a better measure of cancer progression.
Posted 5/1/2017 8:27 PM (GMT 0)
Robert, good news! Thanks for the update and congrats for being a smart, empowered patient.

Jim
Posted 5/1/2017 9:07 PM (GMT 0)
I'm confused, what happened with your 3 positive cores? Not being a party pooper here, but curious how this is possible after a positive biopsy.
Posted 5/1/2017 9:08 PM (GMT 0)
RobertMP -

Glad nothing suspicious showed up on your MRI.

I'm curious in a case like that what your follow up biopsy will be like. I assume since the MRI showed nothing, then there is no imaging data to use as guidance... so do they just do 12 random cores, or is there extra focus of the biopsy around your original tumor area(s)?
Posted 5/1/2017 11:57 PM (GMT 0)
Jack -thank you

Tall Allen- I do have issue with urgency and incomplete voiding and now have a prescription for Flowmax (which I have yet to fill).

Tudpock - dunno about smart, but stubborn and cautious.

Searchinginla- My understanding is the MRI doesn't detect low grade/low volume cancer, but rather the purpose is to highlight areas of higher grade/volume to target at time of biopsy. So yes my Gleason 6 is still there but not in high enough volume to show up.

Tutor Paul- I don't know the answer, but that is a question I have for the doc when I speak with him
Posted 5/2/2017 12:27 AM (GMT 0)
tutorpaul is correct - usually 12 systematic cores plus a few extra from areas that were previously shown to have cancer. Of course, the way to be almost totally sure is with a transperineal template mapping biopsy.

Flomax + finasteride is a popular combination - there's a combo called Jalyn - or you can just take 2 pills (they are generic and fairly cheap). I think the finasteride will shrink the blockage and give you a lot of relief.
Posted 5/30/2017 3:58 AM (GMT 0)
Update, Confirmatory 12 core biopsy on 5/23/17 @ Glenbrook NorthShore Hospital, Glenview Il:
No evidence of malignancy found on all twelve cores
Two cores of adenomatous hyperplasia
Posted 5/30/2017 11:16 AM (GMT 0)
Super cool!

Aren't you incredibly glad you didn't follow the lemmings off the cliff!
Posted 5/30/2017 11:53 AM (GMT 0)
Jack, yes. Had I chose to treat last year, my postings here would undoubtedly be about some side effect or another I'd likely be suffering from.
Got the news yesterday via the North Shore portal, and my wife who is a nurse and was skeptical of my wanting to pursue AS,started crying and thanked me for being such a stubborn SOB.
And for the record, I couldnt be happier with the treatment I've been receiving NorthShore. They've been a refreshing 180 from what I encountered @ both Vanderbilt and the local mega Uro group.
Posted 5/30/2017 12:41 PM (GMT 0)
Great news! I recall reading a report from Johns Hopkins a couple of years ago which stated that a negative biopsy following a previous positive one was a strong indicator of an indolent case, which would likely never be life-threatening. You made a smart choice, and you get the rewards of a normal quality of life.
Posted 5/30/2017 2:49 PM (GMT 0)

Robertmp said...

Got the news yesterday via the North Shore portal, and my wife who is a nurse and was skeptical of my wanting to pursue AS, started crying and thanked me for being such a stubborn SOB.


Hahaha...that's a great story. I'm happy for you both!

A smart, stubborn SOB!

Congratulations to you...on behalf of all the folks here at HW/PC. Your story will probably help some other guy who shows up scared, unaware, but with favorable-risk PC.
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