Newly diagnosed PCa brothers~tips~tricks~and fits

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zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 6:46 AM (GMT -6)   
Be aware that the usual or average case of PCa is a slow growing cancer and yes you have plenty of time to study it up and decide if and when and what type of treatment you may have. First thing you may encounter is biopsies from the prostate gland, you can get an local anesthetic to avoid the stinging pain that otherwise you will feel during the process. Probably you will get 12 needle biopsies, perhaps more, 6 is a less useful sampling. The biopsy taken is somewhat definitive as to what is found (small sampling) and experts may vary some on rating the cancer via Gleason score, percentage found, type of prostate cancer (there are variations). This pathology is put into a report, demand that your doctor give one to you (by law you are intitled in the USA), then use that information to find out what level of cancer is presented= get to understand the language of pathology or have some others fill you in on some of that. This is still not totally definitive as to what you could have in your body, as the needle in a haystack is what a biopsy sampling actually is, you can also have various grades of cancer (different Gleason scores) found within your gland. I had 3 different Gleason scores and had 12 of 12 positive biopsies with high percentage of cancer found in all of them, it was kind of equally spread out on both sides of the gland in similar biopsy fashion. Very daunting numbers to look at and knew zero on this when diagnosed at age 52.
Went to 2 leading surgeons I found out about, and got 2 totally different prognosis's and opinions. Doc 'A' "curative and 1% chance of incontenence" (how did he know???), doc "B" after examining my stats and records  "I will not do surgery on you"  (how did he know???) Well after that I got about 6 more opinions from various types of protocols/docs and they confirmed doc "B" as a more correct opinion, although they would like to sell me their treatment/protocol. Interestingly I fired a couple of docs and cancelled a radiation treatment a day or so before it was to begin, because I was not told total truths. Best of all insurance company paid for everything, even firing of docs, this exceeded my expectations.
Suggestions for newly diagnosed:   get impowered and do not be passive about your treatments, I saw bias, agendas and even falsehood  (lying). Do not let anyone rush you into a particular treatment, they will try and convince you that you don't have time or only they could cure you. (bull)
Road map:  use internet, books, tapes, join support groups (local or otherwise), get newletters like (Paact Newsletter), get the book "A Primer on Prostate Cancer-the empowered patients guide", find websites like www.prostate-help.org  or  www.yananow.net  to find out about questions, answers, other case histories (actual people that you can even contact). Learn all you can and it will help you decide upon your course of action, only you have to live with the treatments, side effects, maintenance etc.  The world of PCa is unreal at every turn: diagnose, biopsies, protocols, scans, therapies. Nothing is totally definitive with 100% accuracy, the docs in fact never know "they got it all", never know if they "see it all" (scans are far from definitive and reliable enough). Don't believe me? The failure rates on surgery and other PCa protocols are note worthy(long run 30-34% for surgery), and not everyone is a candidate for successful surgery which hopefully the doc would reveal to some patients who are very high risk for curative surgery, atleast let the patient decide if "debulking" the cancer via removal is worth his considerations and risks.
All treatments can have side effects or changes to your life, manhood etc., hopefully you are told about such up front before your gland is: removed, fried, cooked, frozen or whatever.
I will post another thing on hormone related therapies which is another avenue for considerations.
 
The more factual truth we are given, the better peace of mind you will have after the dust settles.
 
Bob  (neutrondbob-aka)
 "Youth is wasted on the young"-W.C. Fields

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/26/2008 7:27 AM (GMT -6)   
Bob, your posting hit me the wrong way, I won't speak for anyone else here but myself. What kind of snake oil are you selling here? Your opinion stated here cheapens every struggle, every decision, every worry, every choice, every bit of research, my wife and I, my long term family physican, and my well experienced and compassionate urologist/surgeon I was fortunate enough to be teemed up with. None of this was easy, I went through the whole gambit of emotions in the decisions I made to this point, and yes, being human, and at times of suffering, I still try to second guess my decisions. What you wrote to me, is either some kind of scam in disguise or just heartless without feelings. As for myself, I don't appreciate it. Thanks for nothing.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/26/2008 8:49 AM (GMT -6)   
Bob, I am not sure if you are angry or what. Finding out you have PCa is devastating for most families and yes it is incumbent upon us to do our due diligence however at some point a level of trust needs to be established between you and your doctor. I found that my doctor appreciated my research and input so I honestly had no problems. We always appreciate everyones views here at HW and will extend that same respect to you. With that being said I will say I respectfully disagree with you. There is lots of love and compassion on this forum try to join in a share the values expressed here.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 12/26/2008 9:56 AM (GMT -6)   
Hey Bob,

Personally, I am very glad I had surgery. I had no incontinence and am very happy with my sex life after surgery. The best part is that I have had two years of 0 PSAs. Last May I was dxed with lung cancer and would hate to have to fight it and prostate cancer at the same time. I had surgery and chemo and now both cancers are in remission. No other protocol can beat that.

Got cancer? Get rid of it!!!

Jim
Age 74. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
50 mg Viagra + 1000 mg L-Arginine + .03 cc Trimix = Excellent Results
PSAs from  1/3/07 - 7/17/08 0.00. 
Next PSA test on 1/28/09
Lung cancer dxed on 5/16/08.  Surgery on 6/25/08  T1N1M0 - Stage IIA  Finished 4 cycles of chemo on 11/7/08.
CT scan on 12/2/08 - in remission!!!
Next scan on 2/26/09.
"Patience is essential, attitude is everything."


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 10:10 AM (GMT -6)   
Bob,
At this point we are all pretty much experienced with a biopsy. And anyone who has been here a couple months already has the skinny on what you posted here. I am more interested in your prostate cancer story or credentials for posting this. It's pretty canned advice but I give it out as well. I am a member of no less than 10 websites and/or advocacy organizations (including Yana), and I don't believe I have seen you elsewhere, but there are a lot of Bob's out there I am in touch with, and I just may have seen you around. I guess what I am getting at is that we are cautious about folks who post advice with little information about themselves or their experience with prostate cancer. I would be more inclined to take the advice a doctor who is touting his 1% story than a new member touting a friend who chose ADT3 to treat what just may have been an indolant cancer. Tell us more about neutron Bob, your advice is actually in step with many others, but when we don't know who is giving it, I would stick with a doctors advice.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/26/2008 11:26 AM (GMT -6)   
I think Bob's user name should start with a d rather than a z. Then again with all his misspellings it may. That said I don't think this is a legitimate post. He had eight different opinions all paid by insurance. Seems rather doubtful, and he shows up here like a veteran who has seen it all. Color me skeptical. I'm on record thinking many with low risk Pca are being over treated but I don't have an agenda like d er zufus here appears to have.
Diagnosed 11/08/07
Age: 58
3 of 12 @5%
Psa: 2.3
3+3=6
Size: 34g
T-2-A
 
2/22/08
3D Mapping Saturation Biopsy
1 of 45 @2%
Psa:2.1
3+3=6
28g after taking Avodart
Catheter for 1 day
Good Candidate for TFT
(Targeted Focal Therapy)
Cryosurgery(Ice Balls)
Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center at Denver Fitzsimons Campus
Catheter for 4 days
Slight soreness for 2 weeks but afterward
life returns as normal
 
7/30/08
Psa: .32
 
11/10/08
Psa.62
Not unexpected bounce after
the 80% drop the quarter earlier.
Along with urine flow readings, and
acceptable amount left in bladder measured
by sonic. Results  warrant skipping third
quarter tests, and to return 
April, 2009 for
final biopsy scheduled to
complete clinical research study 
 
 
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/26/2008 12:05 PM (GMT -6)   
Although he is new to our forum, Bob has been around for some time as Neutronbob (proton therapy?). I've seen the aka many times...I think. To each his own. Everyone has an opinion. Frankly, I prefer the one our physician has...a cure has likely been accomplished!

Swim
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 12:18 PM (GMT -6)   

Thanks for the replies, I guess, sorry I stepped on some toes herein.  I did want to warn others, especially the innocent newbies that agendas, bias and worse can exist out there in the PCa world. There are some great docs and compassionate ones, there are also some that would treat you as used car needing repairs. I know cause I met some of them, I had 8 opinions and heard all kinds some that were of sales pitches. Hopefully someone else can have there eyes open enough or mind focused enough to smell an agenda or not be afraid to walk-out or (fire) and get a different doc. I am pleased with the docs I did settle upon, thankfully insurance paid for everything including multiple opinions.

I don't think there is enough straight talk about PCa issues and outcomes, treatments and side effects. I would much rather hear truthful and frank openess, than sugar coated and brushed aside information on PCa and what a patient might expect or go through.

Just look at how many patients have heard stuff like:  "I got it all" (after surgery or such) or "little or no side effects with this" or " little or no chance of incontinence".  It is sugar coated and not the actual truth of PCa. We read alot of posts in various places on such folks. More truth will come out about PCa and treatments and facts and it will not be pleasant for many patients to listen to, this already has seen t.v. time awhile back as to PCa being a 'cottage industry'. You don't have to like me or what I am talking about, someone needs to speak out and push the envelope for being patients advocates for full disclosure and truthfulness up front to new patients. Maybe it is beyond a few voices. I have not posted anything in the last couple years, perhaps I had some pent up expressing to do.

 

(Bob-aka neutrondbob-zufus)

 

 

 

 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 12:54 PM (GMT -6)   
That's ok Bob,
I do agree with you about doctors over-selling their treatment option. But would I have it any other way? They better believe in what they do or please get me to another doctor quick. The fact is, there is no silver bullett and surgery/radiation is the gold standard we have right now for primary care for prostate cancer that is below stage IV. That is not to say that these options are not good for stage IV, just less beneficial.

Hang in there with the group. They are understandably cautious. But you have not attempted to sell anything, and you have advanced knowledge. I think most people who hear someone blindly say that their surgeon or radiologist is dishonest will react the way you have seen. The fact is these doctors do believe in their protocol and so do their patients. My doctors were 100% up front with me about SE's so there was no dishonesty there, and I also did my own research too. I have to say that there is no clinical evidence that ADT3 or DES are great replacement therapies to a patient with Stage T1c/Gleason 5 disease. Did it work for your friend? Probably, but the doctor who decided to prescribe this protocol is easily outside of standard protocol to practically every medical association and journal.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/26/2008 1:46 PM (GMT -6)   
Fair enough replies my friends or enemies, I was very blunt. I hope you did not come away with that you could not be cured by surgery or whatever, you could and many look like they have or did. I would be somewhat leary if a doc claims curative surgery or whatever protocol to you up front in sort of a guaranteed fashion (not the wisest thing to say from "experts"), he should say more like very high chance of curative or looks very favorable, etc. Especially when patients have Gleason scores of 7 or higher and multiple positive biopsies. What does that doc say to his patient a couple years or months down the road when his cancer is continuing and psa rising etc.??? I have heard some testimonals on that too, really sad. How would you feel about what was told to you up front if it sounded like a guarantee?

Even if we cannot win the battle with PCa of which I doubt I will(but will fight hard and consider all choices maybe a breakthrough is coming soon), atleast lets do the best we can on our terms and not on someone elses agenda(consider your choices, all of them). Notice how many docs don't agree even on the simplest of things about PCa? So who's opinion is the right one or the best one???? Many docs will not even do a consensus together on a shared patient, perhaps egos get in the way, I have heard this a few times even among some promenient names in the PCa world, sure they are good at what they do, but they would not get together in their patients best interests, when he requested they do so and he had hired them all at one time or another and perhaps should do it for his sake.

Peace be with us all

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 2:00 PM (GMT -6)   
I once was speaking in front of doctors and mentioned to them that if there were 20 doctors in that room, that I could get 21 opinions on how to treat me. A couple laughed, but the rest wished to instill into me how there may be a hundred ways to treat me. I had to reiterate that I was joking. But you hit the nail on the head about doctors and their commitment to their modality they they specialize in. I don't think they are being dishonest, but let's face it, they do only mention their successes vivadly, and failures marginally. But the same goes for oncologists who tout ADT3. And it irks me when they charge over and above what insurance will pay mostly based on hype. ADT3 and DES are legitimate treatment options for all stages. But I will mention that my little buddy worked before I started ADT. But not since. ED is a nasty side effect that can strike almost all treatment modalities. Some simply luck out, and some simply don't.

Stay with us, Bob. You are a knowledgable poster and the team needs to get to know you better. I apologize if I was too forward with you.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 12/26/2008 2:45 PM (GMT -6)   
So in other words this is just a very long winded way to say the following:

Take your time in choosing a treatment.

Learn all you can to empower yourself.

Know that all doctors will usually recommend their own speciality.

Be skeptical of 100% claimed cure rates and after effects. Wasn't there a claim from some doctors that one pad a day is continent?

Unless you have an ultra high risk PCa the panic that you have to have it out now asap!!!! is foolish. I swear some guys spend more and effort time choosing a car than their PCa treatment.

Most of the above usually gets posted to newbies upon arrival. Some listen some do not.

I'll add once you choose a treatment go ahead and don't look back. Also at that point you need to trust and have faith in your doctor/s. That said whoever posted MD doesn't mean medical deity was right on too.

Also don't be shy asking about after effects. A past post where after surgery one guy was surprised to learn of dry orgasms should never happen.
Diagnosed 11/08/07
Age: 58
3 of 12 @5%
Psa: 2.3
3+3=6
Size: 34g
T-2-A
 
2/22/08
3D Mapping Saturation Biopsy
1 of 45 @2%
Psa:2.1
3+3=6
28g after taking Avodart
Catheter for 1 day
Good Candidate for TFT
(Targeted Focal Therapy)
Cryosurgery(Ice Balls)
Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center at Denver Fitzsimons Campus
Catheter for 4 days
Slight soreness for 2 weeks but afterward
life returns as normal
 
7/30/08
Psa: .32
 
11/10/08
Psa.62
Not unexpected bounce after
the 80% drop the quarter earlier.
Along with urine flow readings, and
acceptable amount left in bladder measured
by sonic. Results  warrant skipping third
quarter tests, and to return 
April, 2009 for
final biopsy scheduled to
complete clinical research study 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/26/2008 9:49 PM (GMT -6)   

Hey team,

Bob is a good standing Yana (www.yananow.net) member and he is very serious about his approach.  His feelings about doctors are from his experiences.  I have encouraged him to post his story to make things understandable.  Here is his link at Yana:

http://www.yananow.net/Mentors/RobP.htm

BTW, Yananow is a great site run by my friend Terry Herbert in Australia.  Terry recently posted a prostate cancer guide he authored that is simply fantastic and great for new and old members.  If you get the chance read Terry's booklet and Bob's story.  Interesting readings indeed!

Tony


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/27/2008 11:30 AM (GMT -6)   
Just wanted to say, know that I know who Bob is, and what he's been through, this whole episode makes more sense. And a relatively newcomer (Oct), I may have over reacted a bit to the original post, particularly since I've never seen the name before, and there was no signature at the bottom to indicate that he was "one of us" and known. It did "spook" me reading his original post, because, I am still at the touchy stage of what I am going through, and hoping and praying I made the right choice in the right order. Bob has the same freedom of expression as the rest of us, so I respect that.

David in SC

"Let there be Peace on Earth, and let it begin with me."
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/27/2008 12:05 PM (GMT -6)   

Hey Dave thanks for the openess and I am not in your shoes or others like you that have been recently treated and maybe second guessing the choices or atleast wondering about them (we probably do that)and definitively we all worry about the outcomes of our treatments and  the followup,coming tests (anxiety factor) is heavy duty to live with camly and peacefully and without tension, etc.  I know you will be sweating bullets on the first few tests, cause I am sure I would have and did even though I was beyond a reasonable candidate for surgery, sweated out 1-2 years of tests to know how successful (my other protocols)did appear, even if it was not going to be a cure.

I call it Limbo land, where alot of us PCa patiens do reside in a world of unknowns, with waiting and anxiety hanging over us constantly. Support groups and boards, newsletters , books, tapes and all such things can help us understand and simpathize our plights. It is harder probably for those who turn inward and hermitize themselves from others. Support is a beautiful thing it like picking up a brother on the battle field and telling him I am with you, I will help you, you are not forgotten and you have value even when you are disabled, maimed or whatever. 

 

Bob Parsons  Dx 2002- bpsa 46.7  12 pos. cores high % in everyone, Gleason 8 given overall, found out via urinary blockage going to emergency room...fyi that catheter was the best gig ever I filled 1-1/2 bags(normal sized) in nothing flat and the relief factor was equal to orgasm at that time. Flomax given immediately and it worked.

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/27/2008 12:57 PM (GMT -6)   
Yeah Bob, even though we all have a common core here, PC, there's no one right or wrong way, no sure thing, and I will agree with you, some articles blow a lot of smoke up people's rump. I will give my dr/surgeon much credit, he's a straight shooter with me, we spent a lot of time talking odds and risks, plusses and minuses, and he never ever sugar coats a thing. He knows I am well read on the subject (not claiming to be an expert), which makes his job easier explaining things to me. He let me know, despite good surgery and a very good post pathology report, with my rapid psa rising prior to surgery, psa well above 10, and a gleason 7, there's more than a casual chance I may have to deal with this again. His best logic to me, was how dangerous salvage surgery is after radiation. I was originally inclinde to radiate this thing, as they did with my previous cancers, strong doses, and then do surgery as a back up. But from I have learned since, this may not be the wisest order of events for many men. Just my take. You are a hell of a fighter and advocate, and I respect you for that.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/27/2008 1:58 PM (GMT -6)   

Back to you Dave that makes alot of sense to not do radiation first then surgery and surgeon docs do not want the job or the risks in so doing. Same is said of hormone treatments and then possible surgery, it becomes a stickly like mess to do surgery on, I have heard from a doc whom said he would not do the job (it aint about money always). Glad you are one of the well informed types and had open and frank discussions with your doc, first.  No monday morning quarterbacking and second guesses is always a good thing. I have met some speakers like David Bostwick pathologists and got to ask a question or two at a support group. This guy is passionate about his work and he lights the room on fire, you would have to see him in action. I would recommend him for pathology review as one of the best, which is said about him anyway, but there are others in the small group of experts (Epstein etc.). He also offers a newer urine testing for PCa screening methodology. (used to be around $350-450 if insurance did not cover it).

I almost got snagged into "curative" surgery by one doc, only he was full of agenda and tried to mis-guide me to make a nice sale. My stats were so terrible that I did not realize I was not even a legimate candidate for successful surgery, found that out a while later after alot of studying up and interviews with many other docs. I was hoping I could do well with such and was getting ready to do robotic lapro method which just started up here in Detroit (as first center in USA, the French set the machine up here and trained the local docs). That doc was up front enough with me as to deny any surgery period, that was totally honest (wow). I know I would have been totally "------" if I had surgery for nothing and no chance of beating PCa" but only used to suit someone elses agenda and perhaps new car purchase. So, I thank him for being man enough to tell me that my chances were about zero for successful surgery. I have had that confirmed by many others and with nomograms etc. So, I don't second guess missing that treatment that I originally thought was the panacea for PCa patients. Now if my stats were low end I most likely would have had that done by that method.

Better New Year for PCa is our hope

 

 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 12/27/2008 3:53 PM (GMT -6)   
Bob thanks for all the posting here. After watching and reading I feel as though I know you. You have a wealth of knowledge that we can all you tap into. Glad you are here.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/27/2008 7:16 PM (GMT -6)   
Bob, I have no problems with the gist of your last post above. For many men, their bout with PC is their first ever with cancer, and with some, even their first bout with a major surgery. I do agree that the books and doctor's for whatever reason, grossly underestimate the side affects. This PC is my 4th bout with cancer since turning 45, so I am not completely green to the subject. With the PC, I knew up front, that I was risking perhaps being impotent the rest of my life at age 56 after surgery, something my wife and I discussed openly and often before the decision. Not every relationship can handle that, as others would attest. As much as I have enjoyed sex in my married life, never a problem or issue in almost 35 years, we decided that I would rather have the chance of being alive longer to see my grandchildren grow up and prosper than then to be guaranteed of still having sex and having a nasty new cancer growing in me. Those that think of PC as the "easy cancer" are so misguided. When I had my other cancers, I didn't have to make treatment choices that could leave me limp and in diapers to survive, a lot of "outsiders" don't seem to get that part, that aside from my rapidly rising PSA, I felt fine, and at my last physical in July, my doc said except for the PSA, I was in great shape for 56. And then I have to make a decision about a tough operation with nasty side affects, and hope and pray for zero PSA, and then hope they stay that way. That's why I personally respect every man's decision here. It's their life, their body, their relationships, and ultimately, their cancer. Just my take.

David
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/27/2008 7:50 PM (GMT -6)   

Dave you could probably write a book about being a cancer survivor especially with 4 trials to deal with, man that is overwhelming. I am sure you learned alot about various cancers and their treatments and could be of help to alot different types of patients with cancers. Hope your up coming psa results are very good, hopefully zero, zilch, nada, is the number given. I know the anticipation thing has got to be unreal right now.

Maybe a joke is a good thing:  'I wouldn't join a club that would have me as a member'

(Groucho Marx- you gotta love his humor)  Maybe this club will have me as a member...(ha-lol).

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 12/27/2008 8:01 PM (GMT -6)   
Actually have written 5 books and had 2 published, but all fiction, lol. I remember that quote of yours I think was in Woody Allen's Annie Hall, but could be mistaken. This club we here are in, no way to b.s. your way into it, and it's without prejiduce or bias, that's for sure.

David
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 

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