Where does your doctor fit into this subject?

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/7/2010 9:06 AM (GMT -6)   
I thought this would be of interest to everyone of us here, communication with our doctors and being informed patients.
 
 
In my own case, my own PCP will stand, listen and answer as many questions as I have, I always give him a copy typed up ahead of time.
 
Same goes with my uro/surgeon, except in my case, I give his nurse the questions after I check in, before I see him.
 
If this article is accurate, than I am fortunate to have that kind of relationship with my main doctors.  For my part, to be fair to my doctor's time, I try hard not to ask stupid questions or go off on some tangent that has nothing to do with the case at hand.
 
With both these doctors, once they are in the room with me, they never ever try to rush me in any way, and will patiently answer my questions or concerns until I have a satisfactory answer.
 
David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 6/7/2010 9:14 AM (GMT -6)   
I like it when one of my Doctors says: "You probably already know this....But" they make sure some of the important stuff wasn't missed by me...

Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 6/7/2010 11:00 AM (GMT -6)   
Interesting article.
My doctor spends sufficient time with me.No problems there. Ditto for my new urologist.
 
Both doctors discourage email.
 
Frankly, while I would love to have email access to my physicians, they are so busy they would be crazy to encourage such use.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/7/2010 11:06 AM (GMT -6)   

Communication is important, of course, but all in all I'd rather have as my PC doctor an SOB who is in the 10% of all PC doctors that Strum says are good to excellent than someone in the other 90% who smiles, holds my hand, and says comforting things.  But that's just me.

Zen9


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 6/7/2010 11:13 AM (GMT -6)   
Zen,

I totally agree with you about the doctor. My wife and I seem to both have been blessed with straight shooting doctors. They don't often come off as rude but they very often are straight forward and to the point. Always take the time to discuss things in the detail that we require but also don't mind calling "bull" when the situation warrants. It is refreshing to say the least.

My old othropedic doctor who did many of my knee surgeries was that way. If I told him that something I did caused pain, he would reply, then why the hell are you doing it.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -scheduled
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 6/7/2010 11:25 AM (GMT -6)   
Zen:
 
How can anyone disagree with your point? But they are not mutually exclusive. Some can be both.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/7/2010 11:33 AM (GMT -6)   

compiler,

Sure, some can be both.  But precious few, precious few.

I long ago learned the trick of asking the nurses who are the good doctors for the various health problems I've had along the way.  I can't tell you how many times a nurse has said to me something like, "I can't stand him, but if I were in trouble I'd want him taking care of me."
 
Maybe many of those who are the very best know that they are the very best and also know that they can get away with being a jerk because they are the very best.  Many (not all) of the rest know in their hearts that they are not the very best and so better smile a lot.
 
Works that way in many other professions, why not medicine?
 
Zen9


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 6/7/2010 11:35 AM (GMT -6)   
A problem with email for docs is that insurance companies don't reimburse docs for reading and responding to patient emails. So if they do too much of it .... Just a reality of the fact that medicine is a business.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 


Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 6/7/2010 11:40 AM (GMT -6)   
My wifes rheumatologist accepts email from both of us. When she had an unusual bruising on her foot I photographed it and emailed it to him. We received a message back in 10 minutes telling her what she should do. He is one in a million! The funny thing was he was telling his associated about the email experience, touting how cool he thought WE were for sending the photo! lol To me it was just the perfect use of the technology.
48, Caucasian, 5' 8", 200lbs, 190lbs, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. No meat, no dairy, lots of fruits and vegetables.
Preferred Treatment: I just want someone to harvest my immune cells, genetically engineer them to fight my prostate cancer, and then infuse them back into my body...


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 6/7/2010 11:53 AM (GMT -6)   
It's a shame that Doctors are not reimbursed for emails. It is much more efficient for both the doc and patient if it's something simple. I probably took advantage of my oncologist and he told me to cut it out and schedule a phone consult so he could bill it.
I still email my radiologist with questions from time to time and I get an answer within a day.
Lawyers bill their time, why can't doctors?
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


reputo
Regular Member


Date Joined Apr 2010
Total Posts : 26
   Posted 6/7/2010 12:46 PM (GMT -6)   
I sent a letter full of questions so that my urologist would have them before my appointment and so that I didn't forget any of them, but he never read it. He said he never received it but I saw it as he flipped through the pages of my file.
Age: 57
Biopsy: June 2009. Gleason Score: 3+3.
Zoladex 10.8 mg subq implant on Nov 2, 2009
da Vinci RRP on March 5, 2010
Pathology: margins clear
6-week post-op PSA .06
April '10, Cialis 10 mg 2xweek, 1/3 of the time results in partial erection
Bladder neck dilation May 2, 2010


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/7/2010 2:41 PM (GMT -6)   
zen, no reason a person can't have a good doctor and a doctor that communicates properly at the same time. And you can have an excellent doctor that still has proper "bed side manners" too. nurses that work around particular doctors are a real good source of info on the doctors, they know in a heart beat if the dr .is any good or not. i know this from being married to a nurse.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 6/7/2010 2:41 PM (GMT -6)   
I'm handling my Bostwick Labs second opinion all in email with my uros staff. But my uro would not answer questions in email though. I can understand that I guess.
48, Caucasian, 5' 8", 200lbs, 190lbs, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3=6, T1C.
Diagnosed: 2-12-10.
Current Treatment: Active Surveillance, next appointment Oct. 2010. No meat, no dairy, lots of fruits and vegetables.
Preferred Treatment: I just want someone to harvest my immune cells, genetically engineer them to fight my prostate cancer, and then infuse them back into my body...


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/7/2010 2:56 PM (GMT -6)   
For the record, I have never asked my uro/surgeon about e-mailing, as with my ongoing deal, I see him at least once a month or more in person. He so busy with a mult-office/practice and doing surgeries in both our major hospital systems, I doubt he would have time to answer. Plus his nurse is real good at sticking a message right under his nose if I need an immediate answer to something.

My radiation oncologist did offer me to email her, but since I saw her once or more a week, never had the need.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/7/2010 3:25 PM (GMT -6)   

Purge,

Zen9 (June 7, 2010, 11:33 a.m.): "Sure, some can be both."

smilewinkgrin

Zen9


Meryle
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/7/2010 7:34 PM (GMT -6)   
Well, I'll agree that skilled and rude is better than, unskilled and sweet but a little sesitivity to what you are presenting to someone would be nice.

I met with a surgeon for the first time last week to discuss surgery as an option. The doc started with, .. "I'll go in and take a couple of lyph nodes, send them to the lab and wait for the results. If they com back positive, then I stitch you back up and we are done, nothing I can do to help you, it has already spread and there's no point in continuing. You've heard all this before, right?" Actually no, first time.
-- Ouch!, ya want to slap the other side too? I guess I just wasn't ready for the shotgun.

Is that a standard prctice ? I've read where they found that the cancer had spread outside the prostate but removed it still.

Meryle



Age: 50
PSA: 10.4
Biopsy: 04/05/2010 - Gleason (3+4) 7, (3+4) 7, (4+4) 8
da Vinci scheduled: 07/16/2010

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 6/7/2010 7:58 PM (GMT -6)   
Just joined this board, unfortunately for me. That said, it's very helpful to hear the thoughts and opinions of so many who are going through this. It amazes me how quickly one becomes "expert" at PC once we are diagnosed. My concern is that my initial urologist deals with mostly older patients (I am 51) - this is because of we have a high percentage of retirned people here. So I went to a urologist in Boston, and opted for a Davinci RP. May 17. Due to scheduling reasons I was aware of in advance, I met with his partner while having catheter reoved, and was informed my pathology came back worse than expected.. my 3+4 was 4+3, and there were positive margins. They indicate they already have me setu to meet with radiology in a few weeks. Now, I have not had discussions of the degree of detail I see some of you discuss here... regarding specific size, location involvment, etc.. Is this something I should expect my urologist to get into in detail when I meet with him in 10 days? Is this science so clear that the specifics of all those factors are ones I should be keenly aware of? Or does it serve to simply add an emotional strain on top of extreme emotion concern that exists along with the pain of post surgery recouperation combined with the knowledge that I have a fight still ahead of me? I have not actually spoken to the primary urologist who performed the surgery (other than in hospital right after), yet they have me scheduled for several radiation appointments. Thought? (And thak you ALL in advance)

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 6/7/2010 8:06 PM (GMT -6)   
The Radiation Oncologist who administered my Brachytherapy about ten days ago encouraged me to email my concerns, if any, directly to him. I'm sure his nurse/manager is the one actually reading my emails but she will confer with the Doc before responding to me. He also gave me his home phone number if I have problems or questions. Of course I'd be reluctant to use his home number unless something really BIG came up. Now, how many Doc's will give out their home number to their patient??
Bob, down in Southern Colorado


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/7/2010 9:10 PM (GMT -6)   
Meryle: first off, welcome here. some surgeons will abort if they find evidence the cancer has escaped the prostate, i.e. to lymph nodes, etc. But others take the view that they will still remove the prostate, since its the primary source of the cancer, and that the bulk of it would be located there. So it could be either way. if you urologist was that blunt, least it sounds like he was being honest, though i am certain that was un-nerving to hear.

Bobcape, welcome also to HW, if you could make a signature at the bottom of your posts, it would make it easier for use to understand some of the basics of your case. With you saying you have multiple positive margins, its a good thing you will be meeting with the radiation folks, to decide if and when you might need radiation. Some will want to wait till you have 2 or 3 post surgical PSA readings, to see if recurrance has happened, and others will want to do radiation as soon as you have recovered enough, to hopefully kill off any stragler cancer cells that might have remained. Please keep us posted.

David in sC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 6/8/2010 8:23 AM (GMT -6)   
Thanks Purgatory. I have added my sig.. hope I did it right... will see after I post this. Question, is there a general life expectancy ballpark chart one can use? My case, 4+3, 51 years old, positive margins, RP? 3-5 5-7 7-10, ETC?


First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/8/2010 9:13 AM (GMT -6)   
Bob, looks like you did the signature fine, gives a lot of good info about you
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/8/2010 9:25 AM (GMT -6)   

BobCape,

Purge didn't answer your question about what you call "ballpark charts," often referred to as "nomograms."  There are several nomograms that many people use.  My doctor referred me to the Memorial Sloan-Kettering Cancer Center site:

http://www.mskcc.org/applications/nomograms/prostate/PostRadicalProstatectomy.aspx

Plug in your information and see what you get.

Good luck, and remember - these are only probabilities, every case of cancer is unique.

Zen9

P.S. For what it's worth, I also will not undergo radiation treatment if my primary surgical treatment fails.


Post Edited (Zen9) : 6/8/2010 8:33:13 AM (GMT-6)


BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 6/8/2010 10:15 AM (GMT -6)   
Thanks Zen.. I did not decide that I would "not" undergo radiation.... just that i'm trying to learn more about it 1st. Can you tell why you definitively will NOT? Also, pathology noted positive margins... this is NOT the same as suggesting there is a found/known tumor beyond the prostate, is it? How do they determine if indeed it has spread other than assuming so with the pos margins? Thanks.
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain!


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/8/2010 10:17 AM (GMT -6)   

Hi BobCape,

I am disheartened to read of you thinking of worst-case scenarios (from your signature):  "I WILL NOT radiate my insides to the point of being a veg for the sake of a few years."  There is a lot of optimism for salvage radiation patients, and many successes!  While I understand your disappointment with the surgery results, I would encourage you to be aware, but don't be dissuaded, by worst-case outcomes.

Here's a link to a medical report published by some of the leading experts in prostate cancer from Johns Hopkins/Brady Urological Institute in the Journal of the Americal Medical Association.  This link will take you to the paper's abstract, which provides the Results and Conclusions of the study.    http://www.ncbi.nlm.nih.gov/pubmed/18560003

I have copied/pasted a portion of the Results section here:

"Salvage radiotherapy alone was associated with a significant 3-fold increase in prostate cancer-specific survival relative to those who received no salvage treatment."

To me, this study shows impressive results!

Go see the radiologist in a few weeks (your first post indicated you have an appointment).  I encourage you to go with as positive an outlook as possible.

Please do keep us informed and do come back with new questions, but I would encourage you to start your own, separate thread, rather than continuing on this one which is called "Where does your doctor fit into this subject?"

best wishes...


BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 6/8/2010 10:32 AM (GMT -6)   
You are right on all counts Casey. I guess i'm just stunned, sitting here with my diaper on my pillow. I do have hope, just feeling sorry for myself I guess. Re new thread, sorry, didn't mean to hijack the thread. Instead of a new one, can you suggest an active one I might follow? Thanks.
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain!

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