Better had never known

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Ron42661
Regular Member


Date Joined Sep 2017
Total Posts : 25
   Posted 9/11/2017 8:04 PM (GMT -7)   
With surgery date 3 weeks out I can't help but feel that it would have been better to never have known I had this. Know it sounds odd given that they believe it's still contained with one Gleason 8. But I just think I would have been happier not knowing and letting things go they way they were going to go.

Wings of Eagles
Veteran Member


Date Joined May 2013
Total Posts : 611
   Posted 9/11/2017 8:24 PM (GMT -7)   
Ron,
To each his own, but for me, I never once even remotely felt that I should not get treated. Doing fine with a lot of treatment 5 years later, keep the faith brother.
Wings aka Dan in Sunny So Cal
DX PCa -Nov/12, age 57=Biop-GS 3+4=7 and 4+3=7 w/mets PSA=71.2 start Lupron ,

1/13=2.7 2/13=0.7 3/13=0.2 6 /13=0.1
9/ 13=0.7 11/13=1.4 12/13=2.7 4/14=2.7
6/14=3.8, 8/14=5.2 Zytiga:
9/14=1.4 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06
9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06
3/17=<0.06 8/17=<0.06

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2596
   Posted 9/11/2017 8:27 PM (GMT -7)   
Ron42661 said...
With surgery date 3 weeks out I can't help but feel that it would have been better to never have known I had this. Know it sounds odd given that they believe it's still contained with one Gleason 8. But I just think I would have been happier not knowing and letting things go they way they were going to go.


Are you having any misgivings about your choice in treatment? With 1 G8, if you had never known, it could have ended up bad later own, but who knows it might be way later on. Plus, just because they only found 1 core of G8 does not mean there is not some more stuff in there. If you are not sure of your treatment, there is still time to make another choice. Not that I am trying to talk you out of your choice, not at all. But I will say you really need to be certain. And you are not sounding real certain, what with " I just think I would have been happier not knowing and letting things go they way they were going to go".

I'm not sure that never having known would have worked out in your favor better than some form of treatment. But then I obviously don't know. God bless you, Brother!
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
At 15 months, not wearing a pad most days, mostly dry
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17

oldbeek
Regular Member


Date Joined Sep 2017
Total Posts : 63
   Posted 9/11/2017 8:29 PM (GMT -7)   
I felt that way a few weeks ago. The cancer was worse than the Gleason score showed. The examination of the removed prostate and nerve bundle confirmed that if not the RT, I could have died a miserable painful death as my brother and sister did. Keep fighting. The incontinence is a mess. I am getting some control at 6 weeks out. Going to start penile injections next week. Kidding wife about what is she going to do with a 2 hr hard on. Life is good after RT. Do not loose hope.

jannnett
Regular Member


Date Joined Jan 2015
Total Posts : 116
   Posted 9/11/2017 8:36 PM (GMT -7)   
Dear Ron,
My father is suffering from gleason 9 (more aggressive than gleason 8) bone metastatic and we are fighting for the disease since 3 years. Dont loose hope and be strong. your loved ones need you and you should do treatment well.

With Good Wishes

Jannet

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2510
   Posted 9/11/2017 8:39 PM (GMT -7)   
If you were a Gleason 6, I would agree with you. But a Gleason 8 needs to be treated. It's way better for you to know now, than be blind sided by something worse in a few years.

But...at the risk of being a jerk here when our main purpose is to be supportive...are you sure surgery is your thing? There are lots of treatments that can cure you. I've been here five years and have been active in the community and spoken with lots of PCa guys so I see successes all the time. No guarantees, of course, but the successes are the rule, not the exception.

Whatever you choose, we support you and will help as we can!
Age 56, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga)
Completed HT (18 months) in April 2014
3/17: T = 167, PSA = 0.13

MDNative
Regular Member


Date Joined Nov 2015
Total Posts : 160
   Posted 9/11/2017 9:59 PM (GMT -7)   
Ron, all due respect and I understand the feelings you're having, but 'never knowing' would have likely ended miserably for you. I don't think you would've wanted your family to endure that. A G8 is serious business. If you're re-thinking your treatment options that's certainly understandable, but if you're thinking of blowing any treatment off, that's not a good idea. It's a _good_ thing that it was found. Heck, if not for a routine PSA test during a routine blood draw by my primary care doc a couple of weeks after I turned 50, I never would've known myself!

My stepfather was a G8 with adverse pathology after surgery (NOT a top surgeon!). He fought the beast for 6 years, and even being the tough, salty, old US Navy bird that he was, he died miserably (bone metastasis) with my mom praying for God to take him at the very end. I wouldn't wish that on anyone.

It's difficult to digest now, but after surgery and especially after catheter removal, you'll feel better. Frankly, my rotator cuff surgery recovery was worse.

Hang in there,

MD
51 yoa at Dx--Some family history of PCa
From 9/2013 to 3/2015 PSAs between 4.85 & 6.7, TRUS Bx-neg 12/2013, 12/2014 PCA3:38, 3/2015 switched from local urology group to Johns Hopkins, PSA 5.8/FPSA 17.4/PHI 28.4, 3/2015 mp3T MRI & Fusion-Guided Bx @ JH, 2/14 cores pos, Bilateral, <5% involvement, GL=6, RRP: 8/2015 @ JH (Dr. Carter)

Post surgical pathology – Upstaged to G7 (3+4), confined throughout. Margins, LN (11), SV, EPE, all negative. Additional findings: HGPIN

pT2C NO

PSA 11/2015 <0.1, 05/2016 <0.1, 9/2016 <.02 (new lab)

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 218
   Posted 9/12/2017 1:41 AM (GMT -7)   
Keep sharing how you feel! Our mind and feelings of fear can be our worst enemy! I wish you peace! Denis
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in lesion, may be overlap All cores less than 30% 8/22/17 - second opinion Yale pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance. Thanks, Denis

Ron42661
Regular Member


Date Joined Sep 2017
Total Posts : 25
   Posted 9/12/2017 3:45 AM (GMT -7)   
With sincere due respect. My feeling is before this chance discovery I had no idea that I have cancer. I would still be doing my every day routine without wondering what is to come and then looking over my shoulder afterwards for the time it raises its head again or finding that things weren't as promising as we thought. Things would go as they always had until one of the symptoms showed up and the time could possibly be short until the inevitable I'm sure I may feel different afterwards. And from all indications surgery is best option for me but right now it is hard to believe that this will ever be put behind me. Sorry this is still new to me

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3388
   Posted 9/12/2017 4:27 AM (GMT -7)   
You say from all indications that surgery is best for you. Have you met with a few different radiation oncologists that specialize in PCa for an assessment?

Look at Michael's and my signatures and you will see that there are radiation therapies that work wonderfully. In no way did my treatment change my life.

Now is the only time to do this research and you can get it done in a few weeks. Too many men end up with treatment regrets because they really didn't do effective research. It is disturbing that you are expressing regrets before the treatment.

Take your time and get multiple assessments so that you can be confident and comfortable with your decision.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2291
   Posted 9/12/2017 4:30 AM (GMT -7)   
This disease, cancer in general, is hard to handle emotionally. It's unpredictable, we don't know when we would have become aware of it, what it would have done untreated, what the truly best treatment is, what side effects we'd have with a different treatment choice, and on, and on. And after treatment, while dealing with those side effects, there will always be the risk of recurrence lurking in the background. Always. From nearly zero, fuggedaboudit, to virtually certain.

Given all of that, is it better to know, or not? There can never be a sure answer to that. We can empathize with your angst, your stress. You're bringing up the whole issue of whether or not screening is a good idea, overdiagnosis, and so on. That's been argued both ways for a long time, and tends to become a lively and contentious thread once it begins. There's no simple answer.

A doctor has been widely quoted saying:
The distinguished urologist Willet Whitmore recognized overdiagnosis as a problem in his famous quote, “The quandary in prostate cancer: Is cure necessary in those for whom it is possible, and is cure possible in those for whom it is necessary?”

This discussion made me think about, of all things, Alfred Hitchcock's discussion about how he created suspense in his movies. The example he gave was of a couple sitting in a restaurant, with a bomb under the table. If they're dining and the bomb just goes off, as a story-telling device it's weak, as it's a merely a sudden shock and over very quickly for the audience. But, as he preferred, you show the audience the restaurant, couple, then the bomb. Then the timer. The couple ordering, the timer counting down, the couple dining, the timer... and so on. The audience is on the edge of their seats, tense, in suspense, practically yelling at the screen "Get out!".

The cancer screening process is like being shown the bomb long before it goes off. We get some vague idea of the size of it (severity), and the timer (anyone's guess), and then live in suspense. Do we try to disarm it (treat it)? Do we just live with it until it goes off? How do you live life carefree knowing it's there, even if it's small with a long timer?

I dunno, it's just an interesting (to me) metaphor that came to mind.
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16

PSA <0.1 : 8/13 - 5/16;
steadying? - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/12/2017 4:41 AM (GMT -7)   
Ron,
I think it depends upon your age and your general health. I don't know your numbers and stats but you can run them yourself to see if treatment will save you.
I was 56 and in excellent health when diagnosed. I ran my numbers and saw that I had a 30% chance of being killed by PCa in 10 years without treatment. And it would be a horrible death. Those odds were too great for me to pass. A 50% chance of having a wet noodle was nothing compared to that big 30%. Treatment reduced my odds to 3%. I can live with that.
Run your numbers and see.

Don't cash out your 401k yet. ;-)
Jeff
Age: 64, Mar. 41 yrs, 56 dx, PSA: 4/09 17.8, 6/09 23.2
Biop.: 6/09 Pos 7/12, 20-70%, G4+3; Bone, CT Neg
DaVin RP: 7/09, U of Roch Med Ctr
Path Rpt: G3+4, pT3aNOMx; 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE, PNI extensive; Sem Ves, Vas def clear, Lymph 0/13
AdVan Sling 1/11
ED total
PSA: 10/09 .04, 7/10 <0.01, 7/11 <0.01, 1/12 <0.02, 4/13 <0.02, 3/14 <0.02, 4/15 <0.02, 5/16 <0.02, 6/17 <0.02!

Ron42661
Regular Member


Date Joined Sep 2017
Total Posts : 25
   Posted 9/12/2017 6:18 AM (GMT -7)   
Coincidently 56 as well and in great health too in fact have lost 50 pounds in last year which makes this almost more unbelievable. The wet noodle thing for better or worse is not an issue as haven't had sex for fifteen years and little chance of it going forward without treatment I had 12 cores 9 benign and one Gleason 6 one 7 and the aggressive 8. If treating I know surgery us best option but the anxiety building up and the unknown has it spread (right now all scans are negative) and wondering will it return for the rest of my days makes me wander down this path. Just venting just scared just so didn't want this. But then who did??? Thanks to all for your time in allowing me a sounding board

Bohemond
Veteran Member


Date Joined Apr 2012
Total Posts : 846
   Posted 9/12/2017 6:36 AM (GMT -7)   
Ron,
Anxiety after learning you have cancer is absolutely normal. For nearly all of us we felt perfectly fine physicaly when told we had cancer and then had to get our heads around undergoing treatment that would make us feel worse, at least for a while. That's the way it works with many cancers. But not knowing would lead to knowing sooner or later, at least for those with the higher risk flavors of the disease.

As for knowing interfering with our ability to get on with our everyday routine, you wil get beyond your initial worry and get back to normal life, because you'll become accustomed and maybe also learn to compartmentalize. That one thing this forum is good for. It's a place to check in with others who are in the same boat.
Jim
Age 71
-2002-PSA 9.4, 5 of 10 cores positive - 30-50%.
-RP April 2002. PT3B N0 MX Gleason=7 (3+4), 75% left lobe; small focus rt lobe.
-PSA low of 0.01; slow rise to 0.4 (Aug 2009).
-SRT Jan/Feb 2010. One lymph node targeted. Casodex 3 months during SRT -PSA 0.00 through Apr 2014;
-0.02 Oct 2014; 0.04 Apr 2016; 0.23 Oct 2016; 0.51 Jan 2017; 0.64 Mar 2017, 0.92 Jun 2017

Post Edited (Bohemond) : 9/12/2017 8:16:09 AM (GMT-6)


BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2596
   Posted 9/12/2017 7:15 AM (GMT -7)   
Ron42661 said...
With sincere due respect. My feeling is before this chance discovery I had no idea that I have cancer. I would still be doing my every day routine without wondering what is to come and then looking over my shoulder afterwards for the time it raises its head again or finding that things weren't as promising as we thought. Things would go as they always had until one of the symptoms showed up and the time could possibly be short until the inevitable I'm sure I may feel different afterwards. And from all indications surgery is best option for me but right now it is hard to believe that this will ever be put behind me. Sorry this is still new to me


That is true, before discovery you had no idea about the problem you had, and now you know. And it is true that- depending probably on your personality type- even after treatment you might worry about this the rest of your life, or as you say "looking over your shoulder".

But would you really prefer, as opposed to being quite possibly cured, making the discovery a few years down the road when painful symptoms show up, also when it is quite possibly too late to do anything to stave off painful death? Sure, you might get a few happy go lucky years before that happens, or maybe quite a few- or maybe not many. I have a friend from HS who died in his early 60s from PC. I'm betting he also didn't know until it was too late. If so, I don't see the advantage to him or his loved ones of dying from PCa vs being cured of it(or at the least almost certain many years of remission/control). Being cured and then having to deal with the fact he had that cancer and it might even come back requiring more treatment, and all of that being on his mind, vs a painful death in his early 60s. Really? Even if he was even more unlucky and had to deal with some bad side effects of treatment, is choosing painful death- possibly at an early age- really a rational choice?

I completely understand the negative emotions that go with this disease an even with treatment for this disease, even negative emotions after treatment that hopefully is successful. I have had my share of all of those negtive vibes. And I can see having some serious concerns about which treatment or possible SEs to choose- and whether or not to have any treatment in the case of low risk guys. But you have been given a gift. The odds say that you are able to choose to completely avoid painful, and maybe early also- death. Assuming high quality treatment, the odds of you NOT dying from this disease at an early age, or really at any age, are solidly in your favor. But only because you know, in time, and are able to choose treatment. That is a gift IMO. Take advantage of it! I understand the fear and anxiety, but screw it: punch this PCa in the nose and then kick it in the balls, take advantage of the gift you have been given. Celebrate not finding out AFTER the odds of dying from it are quite high. Instead, you get to die from something else, most likely! And if you are lucky, you get to die from something else many relatively happy years down the road! yeah smilewinkgrin
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
At 15 months, not wearing a pad most days, mostly dry
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17

Post Edited (BillyBob@388) : 9/12/2017 8:24:46 AM (GMT-6)


AZ Guy
Regular Member


Date Joined Feb 2017
Total Posts : 39
   Posted 9/12/2017 8:38 AM (GMT -7)   
Since my diagnosis in February I had been primarily concerned with side effects of treatment. Given my age and personality, I decided on aggressive treatment and thought I could deal with side effects over time. The surgery was fine and I was able to get an erection after the catheter came out. Regaining continence has been better than expected. But the pathology was a punch to the gut. Upgraded to Gleason 4+3 with positive margins. I feel like there is now a cloud over my head that didn't exist after diagnosis or prior to surgery. I'm trying to adjust to my new normal which will be continual PSA anxiety. It is what it is and I just have to get to that place where I can be a good father, husband, friend, employee, etc... while living in this new normal. I have to believe I will be OK once I reach that acceptance of my new normal. In the meantime I miss my old life very much and am envious of my friends who are not dealing with PCa. But I had PCa whether I knew it or not. It's still better to know so I can take action. Knowledge is Power.
Age 49
DX 2/17: G6 2/12 cores <5% in each; one lobe
PSA 6.6 (doubling actual 3.3 due to Finasteride use)
RALP 8/17
pT2c R1
Gleason 7 (4+3)
Margin Positive
-ECE; -SVI; +PI

tennisplayer
Regular Member


Date Joined Nov 2016
Total Posts : 307
   Posted 9/12/2017 8:40 AM (GMT -7)   
It is natural to feel what you're feeling. Getting a cancer diagnosis when you otherwise feel fine would be a shock to anyone. Plus, there's no way to prepare yourself. It's all a big surprise; the diagnosis, and your reaction.

I didn't experience what you are, but I can assure you I wondered how I could have cancer while I was thinking how healthy I was. I guess cancer can sneak up on you.

I'd urge you to join a prostate cancer support group in your area. You'll meet people like yourself at different points on their journey. Talking and listening should help you gain perspective.

My wife currently teaches meditation. You might want to consider that as well.

My hope is you will treat this disease in the best way for you, and then go forward and live a long, productive life.
Age at diagnosis-66 Diagnosed 6/16
RALP 10/16 at U of Chicago, Dr. Shalhav. Experienced internal bleeding post op requiring transfusion of 2 units.
Pathology Gleason 3+4=7, tumor volume 15% Margins negative except for one focal margin, .1mm
pT2c,N0,MX,R1
PSA @ 6 wks <0.02;16 wks <0.02; 5/17 <0.02
My storywww.healingwell.com/community/default.aspx?f=35&m=3777359

schoolpsych
Regular Member


Date Joined Aug 2016
Total Posts : 145
   Posted 9/12/2017 9:27 AM (GMT -7)   
Cancer sucks. As has already been said, you are not alone in your thoughts. I'm sure many feel this way at some point after diagnosis (I know it popped into my mind a time or two for a short time). It is a normal stage/step of dealing with the diagnosis. However good intentioned, others cannot talk you out of your feeling, it is what it is. However, it is important work through it by continuing to read about PCa and talking with and examining the stories of others who have gone before you.

The reality is that this isn't a disease like an aneurysm or massive heart condition where one minute you're happily eating lunch, the next minute you are dead. If you didn't find it now, chances are very good that some symptom would have caused it to be found within the next couple of years anyway, and then not only would you have been aware of it, but then it would be further along.

"I once was sad because I had no shoes, and then I met a man who had no feet." Look at it this way. Compared to you, I'm the guy who had no feet. Unfortunately, when I came here I found other guys here who had no feet compared to my situation. Finding it when you did is a blessing compared to those who weren't lucky enough to have found it at the stage that you did.

You've got a chance to take care of this while it is still "curable". Even in the worse case scenario, getting treated now is practically guaranteed to give you many more good years as opposed to not having it treated. I've done surgery, radiation, and ADT. Am I cured? Who knows, but I can tell you that I am "back to normal" as far as the quality of life I had pre-diagnosis and feeling even better physically and mentally since the lifestyle changes I made after diagnosis. Hit that $hit with everything you've got. Good luck!
DX at age 50 July 2016 PSA at DX =47
Mixture of G7 and (4+5) G9 cores.
CT Scan, Bone Scan, and lymph node biopsy found one pelvic node positive
open RP At Cleveland Clinic w/Dr. Eric Klein on 12/19/2016. Post Op Path Report confirms G9 and positive pelvic node
1st Lupron shot on August 19th (scheduled for 18 months ADT)
ART w/Dr. Rahul Tendulkar 5/17 -6/17. PSA undetectable since surgery.

Post Edited (schoolpsych) : 9/12/2017 10:30:40 AM (GMT-6)


WifeofPie
Regular Member


Date Joined Feb 2017
Total Posts : 131
   Posted 9/12/2017 5:45 PM (GMT -7)   
Hey Ron,
My husband and I have both had the same fleeting thought. He's a Gleason 9 and went the radiation route, and while he's tolerated it well, the hormone therapy is really nasty. He was asymptomatic and has several times openly wondered if he'd have been better off enjoying life until the disease showed symptoms and then just took its course (because things seemed so fine before, and right now they are NOT FINE).

But those thoughts are fleeting. At this point, it's worth it to us to aim for a cure. I just wanted to let you know that I get what you're saying. I feel like January 2017 was our last normal month, and it'll be a while before we ever get another one. And that just sucks all around.

Stay with us on here. We help each other when we these moments come up (and they do). You have a good shot at a cure, knowing about the cancer earlier means you get to take that shot.
Husband Dx 2/2017 age 57 no symptoms
PSA 6.4
12/12 cores positive - 10 Gleason 7, 2 Gleason 9 (4+5)
bone scan clean, MRI shows no evidence of mets, F18 PET scan clean
PNI present
Stage 3a
Casodex/Lupron started 3/2017. 8/2017 Zytiga added in place of casodex.
HDR Brachy 5/23/17 at UCLA with Dr. Demanes
25 sessions IMRT with Dr. Ash at St. Joe's completed 7/10/17

Fl Drifter
Regular Member


Date Joined May 2016
Total Posts : 289
   Posted 9/12/2017 6:29 PM (GMT -7)   
hey Brother ....all I can add is really read JNF`s post again ..............and yes, ...this all sucks ..............David
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)

Octorobo
Regular Member


Date Joined May 2009
Total Posts : 384
   Posted 9/12/2017 7:07 PM (GMT -7)   
Ron

I know some of the what if feelings. I received the results call at 11:00 am on Friday before labor day ten years ago. Did not know anything about pc. Dr. wanted me and my wife to come visit as the patient of the day on Tuesday. Oh no, Friday night, Saturday, Sunday, Monday, Tuesday what is he going to tell us. 57 years old, great life, had heart bypass surgery 15 years before- age 42,. Talked with friends, and most ignorant "caring" people greeted the news with:"Oh that's the best kind of cancer to have!" I wanted to respond, ok you can have my share of this good thing. Well my family surrounded and prayed for me, my wife said we will get through this. I was better by Sunday with the what if's. I called two friends and got there knowledge- they went to my same doctor. My wife got on the internet and found one of the best pc doctor's in the country. We went to the Tuesday afternoon meeting. Heard that surgery would do the trick. Wednesday we called the other doctor, he could see us Friday morning. He was transitioning for academia to private/research practice. Met him in a shared basement office space in downtown Houston. The building was where I had gone 55 years earlier as child. Not impressive at all. His staff greeted us, did preliminary exam, drew blood, the Dr. popped the glove on and did the deed. We talked with him immediately- he was ready for lunch. He was very confident and reassuring about his skills and the probable outcome. Well, the road has had some bumps in the last ten years- however changing doctors, IMO has saved my life. He was and continues to be a top flight PC specialists. His new digs are first class. He has given me exceptional care. I am grateful for my wife's love and research and his ability. You just do what you have to do. Hopefully your treatment plan will be effective and you will have many years of non-eventful life. Unless I missed something, you really do have to go down some path at this point. GS8 is a dog that will bite- you want to kick it in the teeth every time it even thinks about growling at you.
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

oldbeek
Regular Member


Date Joined Sep 2017
Total Posts : 63
   Posted 9/12/2017 7:12 PM (GMT -7)   
Fl Drifter said...
hey Brother ....all I can add is really read JNF`s post again ..............and yes, ...this all sucks ..............David
X-2 the only regret I had was not finding this group before the RT and exploring all options. You do have the time to do that. In the end, I am still happy with my choice to do the RT. 75, out doing field work today and looking forward to hunting season with my grand children and our bird dogs.

Joe1.
New Member


Date Joined Sep 2017
Total Posts : 11
   Posted 9/12/2017 8:13 PM (GMT -7)   
I think you have received excellent advice to use these weeks before your scheduled surgery to explore all your other treatment options and most of all to be comfortable with your treatment choice before you pull the trigger

What prompts my reply is the oft repeated statement that should one not have treatment they are dooming themselves to a horrible, terrible death from PCa....my response is maybe....

Statistically 10 and 15 year survival for even the most grim of PCa cases show that something other than the cancer is likely to kill you and even a significant number of men who opt for no treatment will survive. Of course PCa is an individual disease and only the man being treated can determine what is an acceptable risk for his particular case.

As to the issue of a horrible death...

My father in law was an lifelong athlete, in 2005 at age 85 he was as strong and vigorous as he had been at 35, spending ten to fifteen hours weekly at the gym and fitting in a round or two of golf a week in addition being the patriarch and mentor to his six daughters and their families. Quite unexpectedly he collapsed one day during a game of handball and was rushed to the hospital. Testing showed he was suffering from severe anemia had a PSA of 16,000, extensive bone mets and organ involvement. He immediately chose to be admitted into a Hospice program and passed peacefully a few months later without having any significant pain that could not be controlled by the hospice staff.

Last summer one of my sister in laws husband was diagnosed with Gleason 9-10 at the age of 59. He chose to "throw everything but the kitchen sink at it" radiation, HT, chemo. Two months into the treatment program he picked up a drug resistant pneumonia and passed within a matter of days.

In 2010 based on my PSA I advised my 53yo brother to have his PSA checked. He scheduled an appointment but was killed in a car wreck before he could make it.

The point of these stories is to illustrate that the only predictable thing in life is its unpredictability and that is especially true of a PCa diagnosis.

Ron, take a little time, focus on your entire life situation not just the part of it that includes a PCa diagnosis, and most importantly come to the best decision for you...
January 03, 2005 2.70
December 12, 2011 6.40
November 09, 2012 7.60
January 08, 2014 7.00
January 14, 2015 8.10
April 20, 2015 10.00
July 06, 2015 9.10
January 19, 2016 10.00
July 15, 2016 8.68
October 20, 2016 11.18
February 10, 2017 10.00 (Finasteride lowered it to 5 so doubled it)
April 6, 2017 3T MRI PI-RADS 4 - High
July 21, 2017 10.2 (5.1 on Finasteride)

Ron42661
Regular Member


Date Joined Sep 2017
Total Posts : 25
   Posted 9/12/2017 8:36 PM (GMT -7)   
This may have been the best post yet on my feelings -- one of the comments I keep going back to is the 30% chance of death -- honestly if the surgeon had said you have a 70% chance to be fine and do nothing you would have seen smoke coming from my feet as I headed out the door -- right now I am seriously considering cancelling the surgery and letting the chips fall as they may - thank you though for all your comments

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2076
   Posted 9/12/2017 10:57 PM (GMT -7)   
Hi Ron,
Before you opt for non treatment please read my thread about my husband's end of life journey thread. If you cancel surgery toexplore other treatment options, that could be helpful in alleviating your anxieties about treatment. But if you don't treat and if that aggressive G8 turns into mets to bones and lymph nodes, at your age, it will be an unpleasant turn of events with no option for complete cure and a long haul with palliative treatment or painful demise. Our MO said younger men's PCa is often more aggressive. Don't know if that's proven fact.
For most dying from PCa is a worse alternative to having to deal with the anxiety and SE's of the potential cure. It's your decision, but you should make it with your eyes wide open.
Best wishes to you in whatever path you choose.
Beth
DH 52@dx 2010
PSA:1983 G4+5=9 multiple mets bones & nodes
Xgeva lupron Docetaxel, Zytiga 2012 Smarium, Xtandi 2013 xofigo 2014 Cabazitaxel, Zytiga
RT sacrum X 10
PSA 1/15 100
2/15 liver mets
DRibbles trial 3/15 PSA:259
6/15:Psa 900
docetaxil PSA 7/15:1054,9/15:921,12/15:1008
xtandi 1/16:665 3/16:1316+ascites
Mitoxantrone 8/16:792 Oct:590 Dec:532 1/17:412 jaw necrosis,
900+ R.I.P. 7/29/17
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