Should you be more proactive in your own PCa journey (appts.-tests-?)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/20/2009 7:14 AM (GMT -6)   
This is my opinion and think it may be heads up for others on PCa and your future with it. Ok you got a doc, maybe a uro-doc and he says I will see you in 3 months or whatever (wonderful). Now do you only take his opinion (cause that is what it boils down to and they are not Gods and not 100% accurate and many times 'dead wrong'-sometimes sued for malpractice or even should be....sorry this is the real world....Marcus Welby M.D. is your fantasy land).
 
Like post surgery ok you are doing fine, forget about the small increases and see me in 3-4 months (b.s.-I say). Find another source in between and get psa tests or whatever tests you believe are in your best interests (free or paid for-who cares your life is in the balance). It may not tell you everything, but then again it could or could be watershed for your psa trend-velocity or changes and verfiying his lab results, etc.  I say maybe trust your doc, always consider verifying and even verifying his words of wisdom or drug choices, whatever. You don't have to of course,  but it is possible you could do better or have better care, more choices, more freedom, etc. Kind of like being put under and getting a limb removed (you are not there to verfiy and point out which one it is), you know the stories...the wrong limb is removed and these are top surgeons (fyi)....no malpractice???? Again this stuff happens, just to show how insane the medical world actually can be, sure it is rare, would you like to be done 'rare-medium-well done'???? Looking back we probably would like to say yes it all was well done, no monday morning quarterbacks.
 
Well you can choose to be proactive in your own case or go with the experts whom are always working day and night on only your case (sarcasm included). yeah
Also second opinions are worth your time, I got about 7 of them....very happy I did.
 "I wouldn't join a club that would have me as a member" (Groucho Marx)


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 6/20/2009 8:33 AM (GMT -6)   
I absolutely agree. I waited too long trusting one doc all the while my PSA was going from 3 to 30. If I did not get second opinion I would not be diagnosed then.

My PSA began to rise, one doc said "no big deal - next test as scheduled in three months", the other docs (and me) disagreed. Good thing, since PSA was rising fast and needed action.

We are each our own best advocate. Docs are just doing their jobs and playing statistics, we are not approaching it that way, nor should we!

Previous 5 biopsies over 4 years negative

PSA going from 3.8 to 28

Father died from PCa @ 78 - normal PSA and DRE

Dx Nov 2007, age 46

PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke

6 rounds of chemo (Taxotere+Avastin)

1/8/2008

33.90

1/11/2008

29.50

1/31/2008

38.20

2/21/2008

32.00

3/13/2008

26.20

4/3/2008

26.60

4/24/2008

20.60

followed by RRP at Duke (Dr. Moul) on 6/16/2008

Pathology

Gleason downgraded 4+3=7

  Duke: T2c N0MX, one positive margin

  Sloan Kettering: T3a N0MX, extraprostatic extension, two positive margins

PSA undetectable for 8 months, then

2/6/2009

0.10

4/26/2009

0.17

5/22/2009

0.20

6/11/2009

0.27

6 Months ADT started 6/12/2009

IMRT to start mid-Aug


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 6/20/2009 8:58 AM (GMT -6)   
I will go one step further, a person needs to be pro-active on anything that is medical related in their lives, and most certainly when dealing with PC or any other cancer.

In depth research and multiple opinions should be a requirement. Doctors, nurses, other medical staff are just as human as me and you. Mistakes are made, bad attitudes can adjust their thinking on a given day. Don't get me wrong, while under treatment, there is nothing worse than a non-compliant patient that thinks they know more then the experts. But that is another subject.

The bottom line, as far as being pro-active, it is your body, your life, your future, your family, your livelihood, your sex life, etc, etc. If you don't stand on the front lines for those things, you sure can't expect anyone else to give it as much attention.

And remember, the medical community is there to serve you, not the other way around. Make sure you have your questions in writing so that you won't get intimidated or flustered, some use a small voice recorder, whatever it takes. Don't end your appt. until all your questions have been asked and answered to your satisfaction. I ve seen mechanics with better bed manners than some doctors I have dealt with.

Act in your own behalf, at all times, and you just might make it.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/20/2009 9:53 AM (GMT -6)   
Yes but where do we draw the line. I do believe that if any one doctor can make a mistake, they all can. If I get a dozen opinions, I will likely get 13 different answers, and to decide on one doctor, what would I see that makes him infallable? Your advice, Bob, is good. But we are still stuck at decision time placing our trust into a doctors hands. No Lebowitz, Myers, Strum, Lee, or any other doctor is error free. And the moment they say they are, it's time to move to another doctor. Question your doctors, yes. But don't miss the best opportunity to be treated either. What ever treatment modality is chosen, effort should be made to find the one you feel the best trust in. Physician experience is our best measuring stick. And doubt is our friend and also can be our enemy.

Tony
 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 6/20/2009 12:06 PM (GMT -6)   
In following Tony's thought and post, whether you call it faith, luck, good judgement, etc, ultimately most of us just have to make a choice or choices on our own, and hope for the best. If you discounted every possible reason to go with or not go with these critical type of decisions, then nothing would ever be decided. And with many variants and degrees of PC, that would be a death warrant (exceptions noted).

Still comes down to ask lots of questions, research it to death (like most of us have done), get multiple opinions when possible (or make it possible), and in the end, go with the best resources you have the means and access to, and then, whether we like it or not, agree or not, just have to go with it and hope you end up on the good side of the long term statistics.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation
 
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 6/20/2009 10:18 PM (GMT -6)   
Well yes, your doctor might be wrong, and the second doctor, and the third. But it may be that you are just shopping for the diagnosis that you like. No matter how much you read on the web you will never be as good as an experienced physician. So at some point you have to shelve your ego and take the advice that you are given.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 6/21/2009 4:23 AM (GMT -6)   
I have to agree with Zufus. You have no better advocate than yourself. That greeting when you walk in the doc's office of "hello John, how are you?" is not because your doc remembers you and the peculiarities of your case well, but rather that is the name on the top of your case notes that he has just (hopefully) read. And who would expect him to remember you. Two to three ops a day, two to three patients an hour for however many hours all week long, month in, month out. Because it is so routine to them it must all become a blur after a while. Most here now know that there are various scans that can help with detailing the tumour pre-surgery........we know the higher the number of cores sampled the better the picture of the extent of the tumour. Yet most biopsies by most docs consist of 10-12 cores guided by standard TRUS and we are left to decide our treatment based on that limited information. Should my PSA raise its head ahead and hit say 0.15 the last thing I will listen to is a doc casually saying "let's see how it's going in six months". At this stage I check mine ultra-sensitively each three months because I want a clear continuous picture of what is going on. No, if it is one thing this site has taught me it is to carefully monitor yourself and learn all you can about this disease. If a doc should suggest a particular course of action I want to understand why and what are the full implications of adopting or not adopting that course. I am cynical enough to believe that the vast majority of doctors enter medicine, not for altruistic reasons, but because of the prestige and money that the business of medicine brings. That is not to say I do not respect them and admire their intelligence and skill but at the end of the day it is your future that is on the line.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/22/2009 2:35 AM (GMT -6)   
Billy,
I agree with Bob as well on getting second opinions. But my question is when do we draw the line on how many and what makes a selection the right one? Like Geezer says, at some point do we begin to just be looking for the answers we prefer over the treatments that will best help us?

Tony
 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 6/22/2009 5:18 AM (GMT -6)   
I have seen 4 doctors and as far has a DRE results are concerned they have all said different things the first has given me 3 DREs and did not find anything the second felt a lump the third did not bother to give me a DRE the fourth found two lumps most of these were done in a 10 day time scale so who do I believe  
 
 
Age 64 From UK now in Thailand 
Baby boy born 2/14/2009
 
First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results were
findings
Both specimens show no adenocarcinoma
 
MRSI done on 5/8/09 No signs of any cancer
5/15/0924 Core biopsy results
Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side
no perineural or angiolymphatic invation identified
One side PIN High Grade
Bone scan clear 
 


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 6/22/2009 3:18 PM (GMT -6)   
While reading all this it reminded me of an old Chinese Proverb (abridged):

"A Patient with one doctor always knows the diagnosis.

A Patient with a doctor, a uro, a PA, an Onco, a wife, a brother-in-law-who-also-had-PC, another Uro, an Internet Connection, and drinking buddies ...... is never sure!!!"

And oh, by the way, he's probably never sure of the time either.

smilewinkgrin

jim
Age 58, 195lbs, 6'4", 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
Biopsy Nov2008 1 of 12 cores 5%, Gleason 3+3 - Sona showed 140+ cc (110 grams post op) prostate size.
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm STONE within hours.
Using pump (Encore) daily since catheter out - working good with 2 rings.
04/01/09 Was Oxalate stone -- usually from kidneys -- X-ray Kidneys @ next PSA).
03/06/09 Started Levitra 20mg rehabbing -> no real effect yet (04/01/09) . (Same for Viagra @ 100mg)
04/01/09 PSA <0.1 (And starting Cialis daily @ 5-10mg) -- 04/19 nocturnals finally starting!


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 6/22/2009 3:22 PM (GMT -6)   
What a dark cloud Zufus must live under.  Life is one continual experience of doom and gloom.  I feel badly for you.  I've probably missed mention of it, but can you direct me to the report(s) of your personal experiences with prostate cancer and surgery, what you think worked and didn't work?  Thanks.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0

 

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 26, 2018 9:35 AM (GMT -6)
There are a total of 3,006,755 posts in 329,392 threads.
View Active Threads


Who's Online
This forum has 161849 registered members. Please welcome our newest member, Michael007.
205 Guest(s), 8 Registered Member(s) are currently online.  Details
getting by, BillyBob@388, Katia, dbell, garyi, colja, k07, Sahale