Better had never known

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fiddlecanoe
Regular Member


Date Joined Oct 2016
Total Posts : 175
   Posted 9/13/2017 1:23 AM (GMT -6)   
Why are you convinced that surgery is the best option for you?
Why do you think you have a 30% chance of dying of prostate cancer?
I think you should probably slow down, learn more, visit a radiation oncologist to learn more about radiation therapy (if you haven't already), learn more about non-treatment, and wait a while before deciding what to do. The choice facing you isn't surgery in three weeks or nothing. You could put off the surgery for a couple of months, you could pick an alternate therapy such as radiation, or you could decide to do nothing. It seems to me that you are engaging in bit of wishful thinking, imagining that if you don't treat, the cancer will not kill you, or that if it does kill you, it will be clean and relatively painless. You can and should investigate these possibilities before you decide what to do.
Age: 62
Diagnosed in July 2016 with G7 (4+3) PC & PNI
Bone & CT scans clear
Surgery at Lenox Hill Hospital in NYC, 9/12/2016
Post-surgery pathology showed G7 (3+4), with SVI and PSM
Lymph nodes clear
First post-surgery PSA October, 2016: <.008
Second post-surgery PSA December, 2016: 0.01
Third post-surgery PSA June 2017: 0.05
IMRT begun: July 18, 2017 (35 fractions)

Octorobo
Regular Member


Date Joined May 2009
Total Posts : 373
   Posted 9/13/2017 4:05 AM (GMT -6)   
Wow Ron

Your last post gives the impression that there is more going on here than just anxiety over the descition to have surgery. You have had excellent, compassionate advice given to you by individuals who have been down this undesirable road. Yes statistically you have options of different kinds of .treatments, yes, with treatment, you have a pretty good chance of a positive outcome. That 70% number is a pretty positive outcome with treatment or if you are 80 years old. The responses you have received are general for sure. None of us know the specifics of your life. Your response and your need seem to be greater than what a knowledge based and experiential based forum can deliver. Every PC case is unique. Every life's circumstance is one's own as well. This known for sure, you have at least one core of GS8 cancer in your body. How you process that and come to terms with moving forward is something that is your responsibility. Your life has changed. You have medical, emotional and other circumstantial desitions that require your "big boy pants". I encourage you to get a team around you that will be your advacate in this joinery.
Diagnosis in August 2007
Age 57
PSA 4.1 Gleason 3+4=7
Robotic Surgery - 10/2007
GS 3+4=7, Stage T3a N0 MX, Margins-, EPE +, PIN+, Nodes-
Post- Surgery PSA .005, Jan. 2015 .06
SRT ended 5/15/15. 35 treatments 70 Gy's 8/1/'15 PSA <.006 11/1/2015 <.006 5/2016 <.006. 12/2016 <.006, 5/2017 <.006

Ron42661
New Member


Date Joined Sep 2017
Total Posts : 15
   Posted 9/13/2017 5:13 AM (GMT -6)   
Please don't get me wrong or think I do not appreciate all of your input and support. I have looked at all the options and discussing with several doctors and other folks who have had similar situations. Surgery was the preferable option. The one thing that nobody would ever tell me or give any input was if I did nothing because in all opines it seemed idiotic given the general belief that it had been contained and one 8 score. how long will it take to run the inevitable course if ever? If I am hearing the possibility of it getting me in five years or 70% that it may never maybe it's worth the risk of doing nothing instead of going through this Excercise that "likely" will help but no guarantees I absolutely appreciate all your comments and appreciate that everyone's choices are those that are best for them. Rambling again. But I wanted to all to know your opinions are very helpful and appreciate them but am probably unsuccessfully portraying my view point. Thanks all

Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 135
   Posted 9/13/2017 5:21 AM (GMT -6)   
Hi Ron, looked back to your earlier posts and saw that your fairly young yet with many possible years ahead of you to enjoy what's sounds like a great family you have I would kinda myself be thankful that I found out this dx early so You can take care of it in whatever treatment you select consider it just a bump in your life's journey and keep on keeping on enjoying your loved ones and friends for many years

Larry
Male 61 DX age 60
Father had PC
2002. Psa. .08. Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Path Report: Gleason 9, Seminal vessels and one nerve removed, negative on margins, 35 lymph nodes removed no cancer, tumor was pt3b. Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia repair
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
8-29-17 shoulder replacement

Fl Drifter
Regular Member


Date Joined May 2016
Total Posts : 274
   Posted 9/13/2017 6:43 AM (GMT -6)   
Hi Ron....me again....I don`t want you to think I`m being unsensitive...just trying to be real here ....with your not really caring about haveing any treatment attitude ...why not just take the EASIER way? No scalpel ...no cath....no down time ....none of he possible SE`s that come with surgery....just get that little walnut fried and be on your way......radiation kills Pca cells .....all of them...and it covers a small area around the nut if your worried about the G8....too easy ....your making this all very difficult for yourself........your our BROTHER now ... we do care
67yr.-PSA 10(2016).. 12 Biops 7 of 12 cancer ...Gleason 7-T2c-neg. bone scan and neg iodine MRI - 3+3=6 50% 3+4=7 60% 4+3=7 20% 3+4=7 60% 3+4=7 50% 3+4=7 30% ( all in left apex) then 3+3=6 5% in right apex...Lupron (6mo) shot 6-16... Markers-45 fractions of IGRT,,,81 Gy...starting fractions Oct.2016...finished on Dec.20th ..1st PSA-.4(4-2017)2nd PSA .7(8-2017)

Gear
Regular Member


Date Joined Oct 2016
Total Posts : 157
   Posted 9/13/2017 9:46 AM (GMT -6)   
Sounds like you are facing death for the first time. It really changes your perspective on life and you start to realize for the first time there is no happy ending to this story. No doctor can stop your death and you can’t run or negotiate different facts, but luckily we live in a time where we can find problems and have some tools to delay the inevitable. - Use them!
DX 9/2011 @ age 50, PSA: 2.1, 10/6/2011 RP Da-Vinci
4-3 Gleason, PT2C, -SV, -Mar,+PI, NX... <.02 first 4+ years
Start SRT@ PSA 0.25, 38 Sessions-68.4 Gy, Finished 02/1/17
PSA: 5/17-.12, 8/17-.031,

duke68
Regular Member


Date Joined Mar 2007
Total Posts : 238
   Posted 9/13/2017 10:21 AM (GMT -6)   
Hi Ron
Just for some personal information on my situation.

In 4 weeks I'll be 11 years out from diagnosis .

Gleason 9 and 2nd opinion Gleason 8. tertiary 5

I was aggressive on treatment. How much that helped I don't know, but that's my attitude
fighting this disease.

Best wishes to you on your treatment decision.
Gerry
age 68 Oct 2006 G8 T2b psa 11.7
4 of 8 cores 20% 30% 60% 100%
rrp Dec 2006 G9 4+5 m+ sv+ ece 6 wk psa 0.6 Dana-Farber pT3b N1 4+4 + T5 = G9
3/2007 ADT2 6 months
4/2007 SRT 35 sessions LN and prostrate. Psa <0.1 6- 2007 to 3- 2010
Psa 6/10 0.3 12/10 2.5 sad clinical trial
Dana- Farber Ph2 Avastin 6 month Adt2
46 month Psa 3.1 out of trial. adt1
Lupron fail psa 3.0 add casodex psa 0.3 6/2017

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2459
   Posted 9/13/2017 10:50 AM (GMT -6)   
Ron42661 said...
Please don't get me wrong or think I do not appreciate all of your input and support. I have looked at all the options and discussing with several doctors and other folks who have had similar situations. Surgery was the preferable option. The one thing that nobody would ever tell me or give any input was if I did nothing because in all opines it seemed idiotic given the general belief that it had been contained and one 8 score. how long will it take to run the inevitable course if ever? If I am hearing the possibility of it getting me in five years or 70% that it may never maybe it's worth the risk of doing nothing instead of going through this Excercise that "likely" will help but no guarantees I absolutely appreciate all your comments and appreciate that everyone's choices are those that are best for them. Rambling again. But I wanted to all to know your opinions are very helpful and appreciate them but am probably unsuccessfully portraying my view point. Thanks all


In response to my probaly panicked questions along the line of "what are the odds of this actually killing me before I die of something else:One thing my URO(not the one who actually did my surgery) said to me that really got my attention, and that we may not always consider: it is no picnic living with prostate cancer.

Now, that may sound like stating the obvious. But we often think only in terms of the actual death, which may not come for many years down the road even with no treatment. And in fact, even with an aggressive and advancing PC inside of us, no telling how many of us will die of heart attack or stroke or even some other far more aggressive cancer before the PCa can actually take us out. If that happens, we end up in the statistics of men who had PC but did not die of PC. But that does not mean we won the gamble against PC, hence his statement about living with advancing PC being no picnic. He mentioned, for example, spread into the bladder. And of course the pain associated with spread into the bones. So he could or would not really tell me my odds of living maybe a long time even with an untreated high risk case. But as one who deals with lots of PC patients on a daily basis for many years, who could tell me that just because I lived a long life with aggressive PC and even died of a heart attack like most folks, that does not mean my long life was going to be a good one. And as much as I did not want treatment, I decided he might have a point. But to each his own.

Also, when you asked them "how long will it take to run the inevitable course if ever?", too bad they didn't at least give you an educated guess, what the statistics show. But I just keep in mind my friend, several years younger the me(now 68), who died several years ago of PC. He must have been early 60s. And I'm betting the last few years of his life- with or without treatment, I don't know his details- were not all that much fun. So the point is, it does kill some guys pretty quick, or quick enough. Others go along time but suffer from the disease before dying of something else. I guess there is a final group that, even though hi risk, make it quite a while, die of something else, and never even suffer from the PC. Which group will you be in?

Post Edited (BillyBob@388) : 9/13/2017 11:53:31 AM (GMT-6)


BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2459
   Posted 9/13/2017 11:50 AM (GMT -6)   
"how long will it take to run the inevitable course if ever?" I don't know, but:
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3091266/
Somebody said...

Results

The three models project that 20–33% of men have preclinical onset; of these 38–50% would be clinically diagnosed and 12–25% would die of the disease in the absence of screening and primary treatment. The risk that men under age 60 at PSA detection with Gleason score 2–7 would have been clinically diagnosed in the absence of screening is 67–93% and would die of the disease in the absence of primary treatment is 23–34%. For Gleason score 8–10 these risks are 90–96% and 63–83%.
Conclusions

Risks of disease progression among untreated PSA-detected cases can be nontrivial, particularly for younger men and men with high Gleason scores. Model projections can be useful for informing decisions about treatment.


www.healingwell.com/community/default.aspx?f=35&m=2230814. From the OP:

Somebody said...
Review of the medical literature —Mortality of Untreated Prostate Cancer.
Prostate cancer mortality before the PSA era. .........................................
What follows are selections from various sources related to the mortality of untreated prostate cancer:

1. Prostate cancer mortality was 80% in men younger than 60 years, 63% in men 60-69 years old, 53% in men 70-79 years old and 49% in men older than 80 years.
Source.
Damber JE, Grönberg H .Mortality due to prostatic carcinoma in northern Sweden. : Urologe A. 1996 Nov;35(6):443-5
........................................
6. The long-term outcome in patients with prostate cancer treated with palliative
intent was examined in two populations from Göteborg, Sweden. The results showed a prostate-cancer-related mortality of 62%. The cumulative mortality increased over time, indicating that prostate cancer may be a slow-growing tumour, but that patients were at considerable risk for disease progression and eventual death. Dying from prostate cancer was associated with a long hospital stay and frequent demands for palliative treatments such as TURP, radiation and procedures due to upper-urinary-tract obstruction. In a subpopulation of patients who survived for more than 10 years, the cancer-related mortality was surprisingly high, 62% after noncurative treatment. Even if the patients were diagnosed before the PSA era, the above findings should be taken into account when advising patients with prostate cancer about therapy if they have a long life expectancy.
Source:
Aus G, Hugosson J. [Non-curative treatment of prostate carcinoma. Outcome in
Göteborg]. Urologe A. 1996 Nov;35(6):449-53.
...............................


www.aboutcancer.com/prostate_untreated.htm

This last source indicates about a 10-20% chance of cancer survival at 10-15 years for untreated high risk, click on the links at the bottom for your Gleason then look at age of diagnosis. I don't vouch for any of these sources, just what I was able to come up with after a search.

Post Edited (BillyBob@388) : 9/13/2017 12:05:18 PM (GMT-6)


Ron42661
New Member


Date Joined Sep 2017
Total Posts : 15
   Posted 9/13/2017 2:10 PM (GMT -6)   
What great info -- thank you so much for all your work!!

mattamx
Regular Member


Date Joined Aug 2015
Total Posts : 185
   Posted 9/13/2017 6:54 PM (GMT -6)   
"It's not the things we do in life that we regret on our death bed, it's the things we do not."

Probably an over used saying, and not entirely accurate, but still worth considering.

I hope the best for you, whatever you decide is best for you.

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 2994
   Posted 9/13/2017 6:58 PM (GMT -6)   
Ron, I know it may sound like we're harping on you, it is because we care, and we've all been mentally where you are.

I'm curious, why are you so set on surgery? Have you actually consulted with at least one radiation oncologist? What did they tell you?

Seriously, with the G8, I'd think twice about surgery simply because you may wind up with the worst of both worlds: having the surgery then finding out you'll need radiation anyway because the surgery didn't get it all. With that significant possibility, why do the surgery at all?
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Works Out
Regular Member


Date Joined Dec 2014
Total Posts : 224
   Posted 9/14/2017 2:07 PM (GMT -6)   
Ron

You are 56 years young with likely many years of good active healthy life ahead of you.

Think most reading this understand what you are going through and understand how desirable blissful ignorance must appear.

I'm not a doctor, and I'm far from the most knowledgeable guy on this site, but think GL8 at your young age has the potential to get ugly if not addressed.

I've mentioned before, my judgement on these things is strongly affected by having a dad diagnosed, also at 56, with advanced cancer, and wishing it had been discovered earlier when he could have had a better outcome with aggressive treatment when it could have made a difference. So I get the controversy where many are saying Pca is needlessly screened for and that there is overtreatment being done in cases. But think in your case you are fortunate to know this now and are treating.

Best of luck
Born 1953 - You Do The Math

-DX Jan 2015
-PSA (Finasteride reduced) 2/15 - 3.46, 9/14 - 3.38, 8/14 - 2.5, 2/14 - 2.1, 9/13 - 1.7, 12/12 - 1.4

HDR Brachytherapy at UCLA 4/30/15 and 5/7/15

-2 cores positive - 30-40%
-Gleason 7 (3+4)

Post Procedure PSA's

8/15 3.5
11/15 1.9
2/16 2.6
5/16 1.4
8/16 1.0
11/16 0.7
2/17 0.6
5/17 0.4

geop
Regular Member


Date Joined Nov 2014
Total Posts : 142
   Posted 9/14/2017 10:08 PM (GMT -6)   
Ron
I wish that I had found out about mine early as you have and had your options. Just look at my signature.
Enough said
Stay strong and do not put off treatment for one minute
diagnosed on 11/11/14- PSA 209, 55 years old
Biopsy on 11/21/14 with 8 cores GL 3+4 and 4 cores 4+4
mets on lower spine, left pelvis and lymph
HT of Firmagon and Casodex strated on 12/4/14
1/5/15 PSA down to 1.2, T-63,
3-15 to 12-2016 PSA remains at <0.02., 5-23-17 <0.02, 9-14-17 <0.02 Still on Firmagon (Degarelix) and Casodex.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6698
   Posted 9/15/2017 10:47 AM (GMT -6)   
Ron,

Welcome!

I got a preliminary diagnosis at 56 based on lab work (with no symptoms I noticed), then a biopsy showed G3+4 up to G4+4 in 9 of 12 cores a few weeks after I turned 57.

I visited and consulted with more doctors and specialists than I can remember, covering all the available types of treatment, and a snake-oil or two. I did choose surgery, and turned out a G4+5 that was not contained. Maybe not the best decision, but it was based on massive amounts of data, I have no regrets, and am not staring in the rear view mirror.

I don't know what would have come of me if I had not made some treatment decision, but because of my job at the time, it likely would have hit me while on some long assignment in a developing or third world country. Once we knew the parameters, it was clear I would not have had much more "good" time.

My life has certainly changed, but I'm still here seven years later, and still get to do some of the things (not all) that I enjoy. Having limits on some life paths has forced me to find new ones to stay busy and positive.
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/09
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12, 6/14 to present
Prolia 6-mo inj 12/12 to present
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-8/17
IV chemo being planned

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2452
   Posted 9/15/2017 11:16 AM (GMT -6)   
Ron, I know that sometimes the side effects of treatment can be life changing but I'll never regret my decision. It has been 8.5 years since my surgery and I'm still kicking. Sure my ED is a problem but there are ways around it. At least I can enjoy every day as it comes. I wish you the best outcome.
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