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Posted 11/6/2015 10:13 AM (GMT -5)
Thanks again for the update. You are on a solid path forward.


You asked: "What a mess, how do you guys deal with this stuff"


The reality is that as your patient education builds, it becomes much less confusing. In my own personal opinion, and this is shared by quite a number of the leading pathologists who specialize in prostate cancer, the medical community does a real disservice to many men by calling what you've got AND what others at the other end of the spectrum have by the same name: "prostate cancer."

The word "cancer" conjures up fear of dying a quick and painful death in our society, and prompts emotionally-based responses like your wife's. No disrespect for that...it's widely recognized as being the common first response.

I think it throws favorable-risk men like us "under the bus" by branding us with the label "cancer." That term puts lots of favorable-risk men on a slippery slope leading to overtreatment.

Anyhow, no need to dwell on this now...my point in these opening sentences is that all this becomes more clear and less of a "mess" as your own patient education matures and develops, and then it becomes less emotional, frightening & confusing. I encourage men in cases like yours to take the time to educate yourself...you have absolutely nothing indicating you should rush.



Have you ordered the book I recommended "Invasion of the Prostate Snatchers" yet? Are you a reader? I don't (of course) make medical recommendations to men who show up here at HW, but I do recommend men educate themselves about PC. This book was co-written by Dr Mark Scholz who is one of the leading PC docs in the world, and doctor to many men here at HW, and it was written for men like you because he recognized that favorable-risk cases were underserved.

Here's a passage from the book which relates to what I wrote above:
The psychological impact of a cancer diagnosis is overwhelming, and the emotional appeal of “cutting it out” drives far too many frightened and vulnerable men toward surgery although, in many cases, no immediate treatment is necessary. According to Stamey, prostate cancer is a disease all men get if they live long enough. “Our job now,” he said, “is to stop removing every man’s prostate who has prostate cancer. We originally thought we were doing the right thing, but we are now figuring out how we went wrong. Some men need prostate treatment but certainly not all of them."

Post Edited (NKinney) : 11/6/2015 1:02:39 PM (GMT-7)

Posted 11/6/2015 4:53 PM (GMT -5)
Nkinney

Haven't gotten the book yet, do plan to read it. If the Cancer DNA report comes back "Favorable non-aggressive", am leaning toward AS. At least until a elevated PSA with additional positive cores is encountered.
Posted 11/6/2015 4:55 PM (GMT -5)

NewDay said...
Nkinney

Haven't gotten the book yet, do plan to read it. If the Cancer DNA report comes back "Favorable non-aggressive", am leaning toward AS. At least until a elevated PSA with additional positive cores is encountered.



Smart! yeah yeah But you will be ok with a higher PSA, and also with a few more cores positive...I'd think in terms of waiting to do something aggressive, wait until something shows up on mpMRI, which is more PC-specific. You will learn more as time goes by...


www.amazon.com/Invasion-Prostate-Snatchers-Unnecessary-Treatment-ebook/dp/B003E8AJ5Q/ref=sr_1_1?s=books&ie=UTF8&qid=1446847525&sr=1-1&keywords=invasion+of+the+prostate+snatchers&pebp=1446847536814&perid=06SBANDQJ7Y4J7WR75AX

Post Edited (JackH) : 11/6/2015 2:59:07 PM (GMT-7)

Posted 11/6/2015 5:39 PM (GMT -5)
The psychological side effects of AS is seldom mentioned in these discussions. AS is not the best option for everyone. If a man can not psychologically bear the thought of carrying a cancer - low risk or not - and when knowing that you have cancer goes out over the quality of life, then that man naturally can, and must be allowed, without feeling guilt, to chose to treat the cancer aggressively with RP or RT instead of AS. It can for some men diagnosed with low risk PCa actually be the best option when all the pros and cons are weighed together.
Posted 11/6/2015 6:18 PM (GMT -5)
Glad you got confirmation on your G6 from JHU. You can check off that box.

I don't know quite how to answer your Risk Management question, other than I think that would be answered at the time by you and your doctor if you're in a good AS program. (If you do go that route.) In general, PC is a slow-growing cancer and keep in mind that the PC mortality rate for AS (for those that qualify) is very, very low.
Posted 11/6/2015 10:36 PM (GMT -5)
Thanks gentlemen, all points well taken.
Posted 11/7/2015 12:44 AM (GMT -5)
Am I wrong to think it makes no sense to do a test to see if a cancer which has been deemed less aggressive by the leading PCA center in the world, is in pathological fact less aggresive. What am I missing? Is it the emperors new clothes. It makes absolutely no logical sense. I challenge anyone to make logical sense out of this. I mean by all means do whatever you want NewDay. I support you all the way Baby... But do not ask me to accept the logic as it is not there...It just ain't. Can you all not see this very simple fact. I feel like I'm the last of the citizens of the town from the town in the 50's movie " Invasion of the Body Snatchers" no disrespect meant to any one. throw me a bone. Just tell me I am right but you just want to make sure it is really less aggressive... any thing so I don't have to worry about that big seed under my bed. NewDay I am being jocular, plz take no offense...but I am correct you know. If not someone...sum baudy tell me, I'm begging sumbaudy... Its got my nose...its got my nose... come on thats a big LOL right there
Posted 11/7/2015 8:58 AM (GMT -5)
logoslidat, already did, at some length. But in a sentence, the purpose for someone in low risk case is to give them MORE confidence in pursuing AS.

Check my earlier post and look for the underlining....I usually underline or italicize or bold for emphasis.
Posted 11/7/2015 10:01 AM (GMT -5)
Logoslidat,

I probably do need to explain my logic on the additional DNA test.

The traditional Gleason Score is a human visual interruption of cell appearance/pattern. Until recent gene technology, it was the only assessment to gage cancer aggressiveness. The new gene testing will give me a biological DNA makeup of the existing cancer tissue. It is hoped, the added cancer DNA data will add some clarity to the aggressiveness risk condition.

In theory, the cancer DNA test should support the Gleason Score report. However, if it does not, then the human visual assessment (Gleason Score) didn't fully represent the cancer threat lying beneath the physical appearance.

Here's the link for the cancer gene test: http://www.usmdpcc.com/news-genetic-testing-a-game-changer-for-prostate-cancer.php

I do value your opinion, please tell me if the cancer DNA test adds no real value to evaluating the risk of aggressiveness.

Post Edited (NewDay) : 11/8/2015 8:30:52 AM (GMT-7)

Posted 11/7/2015 10:11 AM (GMT -5)
Rogerthat. I have to admit on some of the longer posts I skim rather than read them "as I should" Ive been busted before, which usually presents a laugh to others. I have fairly thick skin. Anyway "the rest of the story" as Paul harvey would say, is I got out of bed to tell my wife the story and of course she was watching on tv....drum roll...cymbal clash...The Invasion of the Body Snatchers.. I scare's myself...
Posted 11/7/2015 11:51 AM (GMT -5)
New day, that last line of yours, in an earlier post.."what a mes, how do you guys deal with this stuff".... is a great question. It's really hard.

For me the answer is digest all the science you can, absorb it all, analyze it all, look at the nomograms, consider the studies, TC wtc etc. then with all the knowledge you have, go with your gut.

You may be a great candidate for AS. If your the type that will have a really hard time mentally, living with the knowledge that you have cancer in you, however indolent, then some form of active treatment will possibly be your best option.

Post Edited (Pratoman) : 11/7/2015 10:02:01 AM (GMT-7)

Posted 11/7/2015 12:03 PM (GMT -5)

Gemlin said...
The psychological side effects of AS is seldom mentioned in these discussions. AS is not the best option for everyone. If a man can not psychologically bear the thought of carrying a cancer - low risk or not - and when knowing that you have cancer goes out over the quality of life, then that man naturally can, and must be allowed, without feeling guilt, to chose to treat the cancer aggressively with RP or RT instead of AS. It can for some men diagnosed with low risk PCa actually be the best option when all the pros and cons are weighed together.

Well said. I've said before, sometimes, the psychological factors are underestimated in their value to the decision making process. As long as one has done their due diligence, and gotten the education necessary to make the right decision for them, there is nothing wrong with giving heavy weight to ones make up
Posted 11/7/2015 3:18 PM (GMT -5)
Gemlin and Prat:

VERY well-stated.

Mel
Posted 11/7/2015 9:36 PM (GMT -5)
NewDay I cannot tell you whether it cn or can not. You however will be able to after you get the results. My analysis is based on expert pathological readings of cancer cells and the integrity of same. I extrapolated backward to where if this test can in fact do as you{and the"inventors" of this hope for, i suppose we will have situations where a std pathological review,will come up clean.i.e no cancer...then someone will not be satisfied with that... take the test and lord knows what the results will be and we will be, coupled with ultra sensitive psa tests, off to the races, where some study will "show" "nano gains" in psa as a trigger and over treatment will result Its not as farfetched as it sounds,. I have had saves in ATC situations, with less data than my example above put out. I am gifted/cursed ? with the ability to see very small data points in any situation and draw conclusions from them. Granted its not perfect.. in the 90 % range{dead reckoning}. In any case good luck to you... I wish you well
Posted 11/9/2015 11:34 AM (GMT -5)
Just sharing, thought you might enjoy a laugh to break the stress of the day,

While waiting on the Oncotype cancer DNA test results, I started my wife's natural oil blend treatment for PC. The only side effect.
When I pee, the restroom (public or home) smells like one of those craft/gift stores on vacation :) :) :).

Don't know where this home treatment (daily f/21 days) is going, but, it makes my wife happy to try it. The only background info I found on one of the primary oils was this link: http://www.cancercompass.com/message-board/message/all,76272,0.htm

Go figure, a treatment from the Roman Empire era.
Posted 11/9/2015 2:10 PM (GMT -5)
Researchers discover cancer-killing properties of frankincense in ovarian cancer
www.news-medical.net/news/20131220/Researchers-discover-cancer-killing-properties-of-frankincense-in-ovarian-cancer.aspx
Posted 11/9/2015 4:42 PM (GMT -5)

NewDay said...
...The new gene testing will give me a biological DNA makeup of the existing cancer tissue.....if the cancer DNA test adds no real value to evaluating the risk of aggressiveness.

I believe there is value, but am uncertain of the level of accuracy and so uncertain of the level of value.

"Analytical accuracy was excellent with average biases at qPCR inputs representative of patient samples <9.7% across all assays while amplification efficiencies were within ±6% of the median. Assessments of reproducibility and precision were performed by testing 10 prostate cancer RNA samples over multiple instruments, reagent lots, operators, days (precision), and RNA input levels (reproducibility) using appropriately parameterized linear mixed models. The standard deviations for analytical precision and reproducibility were 1.86 and 2.11 GPS units (100-unit scale) respectively"

Maybe there is a statistician on here who can translate that to a rough % of accuracy?

Also, in a recent thread here it was stated that true Gleason 6 _never_will metastasize and some believe it should not be reported, just as Gleason 5 no longer is reported.

The problem arises in that pathology on a removed prostate will sometimes increase to a higher score when they can section the whole prostate. So, how do you know? Maybe that test will tell. If insurance will pay for it, why not?

And last but not least, Prato nailed it when he said that often here at Healing Well, there is not enough weight given to individual makeup when recommending AS. He has indicated in previous posts he is not the type of personality that would handle it well. Me, every day I would wake up and think "heck, yeah. Beating treatment another day, and a glorious day it is. I literally would be proud of every day. But, that is how I would handle it.
Posted 11/9/2015 7:19 PM (GMT -5)
The good news is that you have many options. The bad news is that you have many options. Good luck with making you decision. Take your time. You can read what my experience was by clicking on the link in my signature.
Posted 11/9/2015 11:06 PM (GMT -5)
Because of what I have learned from the PC site as a whole and my own thread, the condition elements are becoming clear as to the risk.
So many, with so many serious conditions and fights.

I am very, very, lucky to be where I am (Day one of Stage I). If the Urologist had not said, "go home and think about the options for couple of weeks", my wife would of had my RALP scheduled that very day. The quick PC death (age 65) with my Dad is stuck deep in her head. Doesn't help we lost both her parents to cancer (each a 4yr struggle) and our brother in-law (age 45) to cancer. My mother and daughter in-law is also fighting cancer now.

That said, due to the current PC science and data, AS is becoming a stronger option for me.

Post Edited (NewDay) : 12/5/2015 6:51:48 AM (GMT-7)

Posted 11/9/2015 11:57 PM (GMT -5)
It's tough, New. When we first heard that I was positive in the early Spring, I mentioned to my wife that maybe AS was an option since I was seeing Dr. Carter and he is in charge of the program at Hopkins. She didn't really say anything, but I could tell by her demeanor that she was thinking, "Um... yeah, right....."

When the doc didn't mention the possibility I wondered why? I knew I was on the young side for it at 51, but I found out later that being 'bilateral' ruled me out of the JH AS program even as a Gleason 6 with low involvement. It was apparently a fairly recent decision by their team as, for whatever reasons, the risk is greater that bad things can happen bilaterally. As we were returning home, she told me that she was relieved. I didn't get it, but when I told her that I wasn't so relieved and was at least hoping for the AS option, she said "that doctor was going to have to do a whole lot of talking to convince me to leave that poison thing in you." Tough love, right?!

So, it's out and life goes on. Honestly, knowing now that I was upstaged a bit after surgery, it made me feel a bit better about my....er, her decision, LOL! We don't truly know what we have until it's under the 'scope in pathology! My stepfather passed in April after 6 tough years of battling this disease, and we watched him suffer at the end (Gleason 8 and out and about of the capsule when Dx'd). My wife's mom had breast cancer treatment a few years ago and seemed fine--until she suddenly wasn't. She apparently developed aggressive leukemia in response to her treatment and was quickly, and suddenly, gone between her bi-monthly blood tests this September.

Good luck with your decision. I may have fought for the AS route if there were no other considerations, but knowing that the biopsies don't always catch the bad stuff, and with the family stuff on top of it, I was OK with my decision. Now....calling to schedule the surgery was another matter, and a classic example of procrastination! LOL!!!!!

This all sucks, and as you very well know, many here have had it much worse than you or I. Bless them all.
Posted 11/10/2015 8:52 AM (GMT -5)
MDNative, feedback much appreciated. Sounds like you are in a good place after surgery.

Two things you mention stir mixed emotions on the matter.

1. It appears, that there is a considerable amount of Gleason Score upstaging after a prostatectomy. G6's get revised to a G7. This is very disturbing. Should we just assume our G6 is not the real risk status. Thus my logic of getting a cancer DNA test (Oncotype DX) for quantifying the risk I may have.

2. Then there's the $64k question that nobody can answer with todays science. When does it travel, T1, T2, T3, G6, G7 etc? And, how do you time the treatment change to avoid that killer trigger? Time between PSA reporting periods may be to late.

If I take AS, it will probably be under the assumption that PC detection/analyses/treatments will have "significate" advancements in 2-3 years.

Basically, folding now to get a better hand later.

Post Edited (NewDay) : 12/5/2015 6:52:45 AM (GMT-7)

Posted 11/10/2015 9:33 AM (GMT -5)
Don't know about the time frame for sure, but I would hope that the planned "ION" radiation machine would be online in three years or so. Tall Allen made a post about that which shows much promise and having less side effects.
Posted 11/10/2015 9:59 AM (GMT -5)
It is true that some G6s are upgraded to G7 after surgery--I can think of a couple of regular contributors right off the top of my head and I know there are many others. (I can also think of one G6 that had surgery and afterwards they could find no cancer at all.)

I can certainly see the concerns about a G6 going the AS route and wondering if they're really a G7. At the same time, the stats on AS don't show that as being a risk--long term AS studies show it to be extremely safe so that risk doesn't necessarily translate into an issue.

Regarding some other comments here, I've remarked many times that well-meaning friends and family (including spouses) will frequently say "get it out." It's very understandable--you have cancer and you're supposed to do something. I think it's everyone's right to do "get it out" if they choose to do so, but I always think the best decisions come from making considered decisions. That way no matter what route you go, you do it from a position of knowledge and strength.
Posted 11/10/2015 12:18 PM (GMT -5)
but if your test only checks the dna of the gleason six on the original biopsy and it has been verified by experts. nothing is going to be upgraded on that specific biopsy. A new biopsy is needed and/or post op pathology is required to determine. Unless the the test is on findings of newly discovered cells, the test is meaningless in the pathological sense, but not in the physchoical sense, tho even that is questionable to me. It like someone who every time they locks the front door...know it is locked they keep checking it. Caveat: If indeed this test can check the dna of their doubly verified gl6 cell and determine if it will become ore aggressive, then is this not the holy grail of pca research, i.e. being able to determine what is indolent and what is not. Thus making moot all the what if's and buts disappear and well the Holy grail, as it were.
Posted 11/10/2015 5:07 PM (GMT -5)
Generally, 25-30% of surgical pathologies indicate either an upgrade or a downgrade from the biopsy. The whole question of whether G6 "becomes" G7 or higher later is much discussed and not entirely clear. Some researchers (Epstein at JH notably) say that "True" G6 never does anything. Others are less certain.

To me, it is somewhat academic whether a current G6 later turns into a G7 or 8 later on, or whether the G7 or 8 that appears later is from a new source. Bottom line is, that there is no such thing as certainty when it comes to diagnosis. It truly is a judgement call. Now, with highly qualified experts, their judgement is correct most of the time. But, if you want certainty, it's not likely to happen.

This is where we do our best to find experts that we are comfortable with, do our digging and our research, and then we make our decision. And, in the end, we are the ones who have to be good with our decision. No matter what happens next, we have to decide to not let ourselves be consumed by regrets or second-guessing after the fact.
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