Is Your Urologist Smarter Than a Fifth Grader?

New Topic Post Reply Printable Version
51 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4151
   Posted 5/20/2010 9:16 AM (GMT -6)   
I notice that we have a number of new members who are considering treatment.  The following is for your consideration as you evaluate your urologist.  Some of the regulars may want to weigh in with other questions...
 
FYI, my uro did pretty well except for the fact that he thought color doppler was only to check the weather...
 

Is your urologist smarter than a 5th grader?

 

1.      Is he/she smart enough to order a % free PSA test and a PCA3 test (or to tell you why it is not necessary)?

2.      Is he/she smart enough to know that biopsies sometimes cause pain and offer you sedation or at least some sort of pain relief?

3.      Is he/she smart enough to send your biopsy to an expert in PCa pathology (e.g. Epstein at Hopkins or Bostwick Labs)?

4.      Is he/she smart enough to understand that this is a “big deal” to you and clear time on his/her calendar ASAP after the biopsy comes back positive so that you can ask questions and get some understanding of the disease?

5.      Is he/she smart enough to recommend a color doppler ultrasound (or at least to explain why you don’t need one)?

6.      Is he/she smart enough to tell you that a bone scan and/or CT scan for a low PSA situation is a waste of time and money?  Or, if he/she recommends it anyway do they tell you why?

7.      Is he/she smart enough to refer you to some excellent books about prostate cancer so that you have some basics (e.g. books from Walsh and Strum)?

8.      Is he/she smart enough to suggest that you speak with multiple disciplines and doctors so that you understand your options for treatment?

9.      Is he/she smart enough to show you the nomograms for your case so that you understand the likelihood of cure?

10.  Is he/she smart enough to discuss ALL of the potential side effects of the different treatment options, e.g. shorter penis and urine ejaculation for surgery?

11.  Is he/she smart enough to discuss the quality-of-life issues with you in an open, honest way and tell you the comparisons among the various treatments?

12.  Is he/she smart enough to tell you what the options and percentages are for salvage treatment if your primary treatment fails?

13.  Is he/she smart enough to share his/her personal statistics with you re cure rates and quality-of-life issues?

14.  Is he/she smart enough to carefully explain your chosen procedure to you in a very detailed manner…including the before, during and after?

15.  Is he/she smart enough to tell you to use a physician who has done 250+ procedures?

16.  Is he/she smart enough to tell you that there is an epidemic of overtreatment for early stage PCa and to recommend active surveillance to you if you qualify?  Is he/she smart enough to refer you to a physician who is experienced is handling active surveillance patients if he/she does not have the experience?

17.  Is he/she smart enough to tell you that the cure rates for surgery and radiation treatments are the same?

18.  Is he/she smart enough to tell you the specifics of your post procedure sexual rehab?

 

 

Tudpock (Jim)


Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

April6th
Regular Member


Date Joined May 2010
Total Posts : 264
   Posted 5/20/2010 9:46 AM (GMT -6)   
Thanks for the post.

My Uro did pretty good too and didn't mention color doppler either. Or recommend books.

I wasn't shown nomograms of cure rates but was told my cure rate.

He didn't discuss active surveillance with me. Maybe because my Gleason was 3+4 instead of 3+3.

I did have to wait 8 days from the time the doctor called to tell me I had cancer to the time I had my consult with him.

My uro spend 40 minutes with me during the consult.

My Uro is a very experienced open surgeon but still discussed the + and - of Da Vinci and even recommended the best robotic guy in town (Kansas City) should I choose to go with robotic (which I did).

He also said that he still would be happy to have me as a patient for post surgery care even if I had my surgery done by the Da Vinci Uro surgeon, which I thought was pretty cool.
Here are some of my stats:
Age:54
Father diagnosed with PC at age 72 - wasn't contained to prostate when found in 1992.
My PSA rose from 3.2 to 5.1 over the course of 1.5 years with Free PSA at 25% for the last two tests.
DRE showed no evidence of tumor but Uro thought my prostate was a little large for someone my age
PCa diagnosed 4/6/10 after biopsy on 4/1/10
1 out of 12 biopsy samples was positive with 5% of biopsy sample cancerous
Gleason 3+4
Da Vinci surgery scheduled for 6/1/10


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/20/2010 10:18 AM (GMT -6)   

This really good, especially for us newbies

Best - Paella


Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 5/20/2010 10:32 AM (GMT -6)   
Tud,  Thanks for posting the questions.  My long time former uro would get a "no" on most of the questions.  I tried another local uro and he would get a "no" on all of the questions.  I feel a little sheepish mentioning this, but in desperation I was able to get a very good 3rd opinion from my dentist.  He did fairly well on the questions.  His advice: "get out of town fast".  You folks that live near reputable established treatment centers just don't know how diffiicult it is in small communities.  Living in our secret northwest Florida paradise has its draw backs.
 
Carlos

Diagnosed 2/2008 at age 71, Gleason score 5+3=8, stage T1c, PSA 9.1. 
Robotic surgery 5/2008, nerves spared, stg. pT2c, N0, MX, R0, Gleason 5+3=8 
PSA <0.1 at 20 months and each test since surgery.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 5/20/2010 10:40 AM (GMT -6)   

Great post; worth bumping up from time to time or adding as a "sticky".

My 5 uros flunked. My oncologist passed with a A+, but he treats over 1500 PC patients a year and has his own research department so I would expect that he would know a lot more than someone that sees 10 or 15 PC patients a year.

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


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6947
   Posted 5/20/2010 10:48 AM (GMT -6)   
Perhaps this could be added to Alf's list?

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 5/20/2010 11:16 AM (GMT -6)   

Excellent work!

I might quibble with #17 - given the scarcity of randomized tests, I think it would be more accurate to say that we simply do not know whether this is true or not at this time.  Why we are in this situation is another issue.

I would also add Scardino to the list in #7 (particularly after his new book comes out this summer).

Zen9


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 5/20/2010 11:53 AM (GMT -6)   
Great test for all newcomers. My Uro scored only 55% the Yes side. He was a No on color doppler also.
 
Reminds me of a picture I had hanging in my office at one point during my working life. It was a tired, grizzled, sweat soaked, cowboy who was squinting into the sun. The caption under the picture read:
 
"There were a helluva lot of things they did'nt tell me when I hired on with this outfit".
 
 

Age -67 PSA - 4.5

Biopsy  (9/4/09) - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive. Gleason 3+3=6. Stage – T1C  Ct and Bone scans negative.

 

BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Blood in urine for a week. Side effects as expected -  some burning, frequency, urgency.   Resumed daily  1 ½ mile walk after 3 days. 

 

BT followed with 25 IGRT treatments beginning Feb 15 (4500 Gy's). After third week, experienced some fatigue. Now 3 weeks from last treatment - energy level returning. Burning and urgency is improved.

 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 5/20/2010 11:57 AM (GMT -6)   
Thanks JIM, i wish I had this list when I first met my urologist and surgeon.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/20/2010 12:45 PM (GMT -6)   
My uro/surgeon got 12 of your 18, and some of the other 6 didn't pertain to me.

This list may be useful on one hand, but find it still another stab and a bit condenscending towards doctors and surgeons in general, a theme here that some seem to be bent on. If one thinks they are so clever, treat and operate on yourself, and don't comply with your medical staff and the advice they are giving you. They have a name for patient's like that, and its not a good one.

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 - 4/23 put in


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 662
   Posted 5/20/2010 1:27 PM (GMT -6)   

I'm kind of with David. 

My physician was 100% where it counted. I had done my home work and was ready to schedule surgery prior to our consultation post biopsy.  I already had a copy of the report and did what I needed to do.

Hero 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4151
   Posted 5/20/2010 1:46 PM (GMT -6)   
David:
 
I'm not sure why you reacted the way you did.  In no way was I attempting to insult physicians or to suggest that people should treat themselves.  Instead it was a light hearted attempt to help our newcomers understand what they should look for in a urologist.  After all, one of the purposes of our forum is to "help".  If there are specific mistakes that I made in my list by all means feel free to suggest changes.  Otherwise please explain what you feel that I did wrong by starting a thread that gave what I feel is pretty relevant advice to people who might be new to this process...
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6947
   Posted 5/20/2010 1:50 PM (GMT -6)   
The questions are good, and deserve inclusion in Alf's list of things as an "if they don't tell you, ask before you leave" type list. Perhaps I'll have to agree that the context is less than perfect for provoking a proper tone of discussion.

Between my GP who noticed it, and the combination of doctors around the surgery, mine got 100%.

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 5/20/2010 2:09 PM (GMT -6)   
Maybe David was referring to the "are you smarter than . . ." references. This might seem less condescending if it said something like: "As patients, these are some things we believe our urologists should do." But the list itself -- and the other list Hero started in a separate thread -- seem quite useful.
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
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/20/2010 2:36 PM (GMT -6)   
Bingo, medved. I dont think it sends a good message to people here, in particular, new people, that are already scared and uncertain. Doctors and nurses are not idiots, even the worse of them are highly educated, and many of them are up to date and well read in their fields.

Perhaps a questionare could be prepared and printed, so that someone could hand it to their doctor to read, and if they choose, fill out answers to the most pertinent questions. Nothing wrong with that. Only time I don't hand my doctor a note ahead of time, is when I have had to seem them in an emergency situation.

My issue isnt with any of the questions, but in the implied tone.
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 - 4/23 put in


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4151
   Posted 5/20/2010 2:52 PM (GMT -6)   
OK...this was intended as a knock-off of the popular TV show, "Are You Smarter Than a Fifth Grader".   But...geez, louise...now that I know the humor police are out I will henceforth limit my postings to medical terms and the Kings English.  Talk about the necessity to be politically correct...heaven forbid if one of our exalted medical professionals gets any hint of criticism...
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4225
   Posted 5/20/2010 3:18 PM (GMT -6)   
All humor aside, I think that the current state of prostate cancer diagonosis and treatment is poor to say the least. There are too many men being treated when they don't have to be, and the ones treated have way too many serious side affects. The reoccurrance rate of 20% to 30% is also unacceptable, especially when you consider the vast majority of men treated have low risk G6, which means the reoccurranc rate in high and medium risk PC is much higher.
The effort put into proper staging by most doctors is pathetic, using only gleason and psa to come to a recommendation when there are many other staging tests, nomograms and artificial nueral nets that could be used. Instead many low risk patients are sent for expensive, worthless bone and Ct scans that do nothing to support treatment recommendations. Many patient put on HT never have their testosorone levels checked to see if the HT dose is really causing casteration levels.
There are many good doctors out there, but there are a lot more that are treating PC that don't have a clue.
JohnT

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


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 5/20/2010 3:26 PM (GMT -6)   
Darn, mine got 2 out of the 18.


I think that's about an F- isn't it? Oh well, he got fired about two months ago anyway.



Steve

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/21/2010 2:11 AM (GMT -6)   
Hey guys,
I read this with skeptical eyes, and have to say if the intent is humor then this met the criteria. I am concerned about the intentions of the post however. Urologists serve a very important role in medicine, and I would hate to raise doubt on their role based on bias. And if the question is about urologists as oncologists or surgeons, then I simply would like to point out that the criticism of them is very subjective and typically inaccurate. It is also improper to assume or lay discussion that urologists by name are bad doctors because of their specialty. The spin that if your urologist is less intelligent than a fifth grader because he isn't what you selected in treatment modality is very disrespectful of those who disagree. That stated. Have fun here guys. But allow me to take a urologists spot on this and ask, is your patient smarter than a fifth grader?

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 5/21/2010 2:16:21 AM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/21/2010 3:04 AM (GMT -6)   
For example...

1. Is he/she smart enough to order a % free PSA test and a PCA3 test (or to tell you why it is not necessary)?

They are smart enough but most won't. Neither will a prostate oncologist in most cases unless there was an initial negative biopsy. Since we are talking pre-diagnosis here, the urologists must adhere to protocol that will allow further investigation. The fact is that PCA3 is only a few months old as an approved protocol, and that % free is 50% accurate in detecting prostate cancer.

2. Is he/she smart enough to know that biopsies sometimes cause pain and offer you sedation or at least some sort of pain relief?

Virtually all urologists use local anesthetic. I can't name one who does not. Sometimes pain is extensive. But it is unpredictable from patient to patient. In such cases for extensive biopsies (saturation and such) general anesthetic is used.

3. Is he/she smart enough to send your biopsy to an expert in PCa pathology (e.g. Epstein at Hopkins or Bostwick Labs)?

Your list is subjective. Are you saying MSK, Mayo, Harvard or Stanford pathologists, as examples, are incompetent? It is a patients CHOICE to have their labs sent to these guys, I shouldn't be an expectation of their urologist.

4. Is he/she smart enough to understand that this is a “big deal” to you and clear time on his/her calendar ASAP after the biopsy comes back positive so that you can ask questions and get some understanding of the disease?

Does anyone think that being diagnosed with cancer is easy? The problem here is that no one person ever has all the right questions after diagnosis. Certainly not after immediately being told they have cancer. There is no easy way to say "you have cancer" . As a person who runs a live prostate cancer forum, it sometimes takes months for a person to digest this information. You have to tell them several times that they can do well before they believe it. So the "Big Deal" thing requires education beyond the urologists. Or the radiation oncologists or the medical oncologists for that matter?


5. Is he/she smart enough to recommend a color doppler ultrasound (or at least to explain why you don’t need one)?

This has not proven to prolong life or to even change treatment options. I expect it will but the actual number of changed decisions will surprise those who believe in this technology. I see it as an aid. But I also see limitations. if we can add a test that can tell the difference between indolent prostate cancer and aggressive disease, this will supersede detecting where it is located. Of course that requires such a test to not require direct tissue samples. But remember. prostate cancer is typically multi-focal...and any part of it can be aggressive.

6. Is he/she smart enough to tell you that a bone scan and/or CT scan for a low PSA situation is a waste of time and money? Or, if he/she recommends it anyway do they tell you why?

Says who? Certainly a high risk case that shows invasion to the ribs with low PSA is more valuable information that a color doppler finding...

7. Is he/she smart enough to refer you to some excellent books about prostate cancer so that you have some basics (e.g. books from Walsh and Strum)?

Or Myers or Vogelzang? Or Catalona or whoever? The key is that they inform you to take your time and do your research...

8. Is he/she smart enough to suggest that you speak with multiple disciplines and doctors so that you understand your options for treatment?

Mine did but not all do. Whether you talk to a urologists or a radiation oncologist, not all understand the others competencies. I found all radiation oncologists to be committed to their profession and urologists committed to theirs.

9. Is he/she smart enough to show you the nomograms for your case so that you understand the likelihood of cure?

Not one Radiation oncologist suggested I refer to nomograms...I rest my case...

10. Is he/she smart enough to discuss ALL of the potential side effects of the different treatment options, e.g. shorter penis and urine ejaculation for surgery?

Nope. Neither was my radiologists able to tell me about the perineal pains. Or the potential for radiation induced bi-cancers. The jury is out.

11. Is he/she smart enough to discuss the quality-of-life issues with you in an open, honest way and tell you the comparisons among the various treatments?

None of them were. All said they had the best approach. My favorite doctor had me on two and a half years of hormone therapy. It sucked. but in the end, I am treatment free and winning my battle...

12. Is he/she smart enough to tell you what the options and percentages are for salvage treatment if your primary treatment fails?

My radiation oncologists was my backup plan. His backup plan was my hormone therapy or chemotherapy.

13. Is he/she smart enough to share his/her personal statistics with you re cure rates and quality-of-life issues?

I hope so, but this is again very subjective. Regardless of profession...My radiaologists cited general information from studies he did not partake in.

14. Is he/she smart enough to carefully explain your chosen procedure to you in a very detailed manner…including the before, during and after?

Is anyone? This is a compiled question from all above. Does a radiation oncologists explaing these thing? Nope...Mine said what we'll do will work. I asked if it doesn't he said see my medical oncologist...

15. Is he/she smart enough to tell you to use a physician who has done 250+ procedures?

I say 1000 procedures...lol...I agree with you on this...

16. Is he/she smart enough to tell you that there is an epidemic of overtreatment for early stage PCa and to recommend active surveillance to you if you qualify? Is he/she smart enough to refer you to a physician who is experienced is handling active surveillance patients if he/she does not have the experience?

Epidemic is an inappropriate term. According to the Epstein criteria only 15% of patients qualify for active surveillance. Thus referring you to a "qualified specialist" in active surveillance is unheard of.

17. Is he/she smart enough to tell you that the cure rates for surgery and radiation treatments are the same?

Says who?

18. Is he/she smart enough to tell you the specifics of your post procedure sexual rehab?

Mine did and he hit it. But I refer to asking did you ask?
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Post Edited (TC-LasVegas) : 5/21/2010 4:10:48 AM (GMT-6)


brainsurgeon
Regular Member


Date Joined Jul 2009
Total Posts : 137
   Posted 5/21/2010 3:26 AM (GMT -6)   
Reminds me of what we used to say about treating spinal cord injuries. You could do any of a half dozen things to the patient and be assured that several of the "experts" in the country would defend you. Anyone that takes this list seriously, needs to go find a fifth grader to scrub up and do his procedure.
70 years old (1939) USA citizen
Prostatic carcinoma dxed June 2009 by PSA (7.0) and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0. Doubled from 3.5 to 7.0 in one year.
Neg. CT and Bone Scan
4 of 8 biopsies positive (all right side) Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland by Dr. A. Mattei in the Kantonsspital. New Gleason was 4+4=8
pT2c G3 pN0 (0/14 nodes +, Margins, etc. clear
Catheter out in 5 days (home in 3 days). No incontinence
Positional neurpraxia in hip and knee resolved 90+% in 5 months.
Potency: beginning tumescence??? at 3 weeks post-op. Still happens at 3 months PO. Nearly usable one month later. At 5 mo. with 100 mg Vitamin V, pretty good. Now beginning 5 mg Cialis daily. 11 months post-op had first usable erection.
3month PSA less than 0.01, 6 month PSA less than 0.01, 11 month PSA remains less than 0.01


Paella
Regular Member


Date Joined May 2010
Total Posts : 52
   Posted 5/21/2010 3:33 AM (GMT -6)   
Below (revised from your Smarter Than list) is what I plan fax to our Urologist tomorrow.

Thank you -
Paella



1. Should I have a free PSA test and a PCA3 test?
Yes_________ No__________

Reasons why or why not?______________

2. Is a color Doppler only useful BEFORE a biopsy?
Yes_________ No__________

3. Should I have a color Doppler now?
Yes_________ No__________

4. What is the purpose of a bone scan?
_________________________________________________________________________

_________________________________________________________________________

_________________________________________________________________________


5. Who do you consider the best robotic guy in the greater Los Angeles area?

_________________________________________________________________________


6. Who do you consider the best Prostate Oncologist in the greater Los Angeles area?

_________________________________________________________________________


7. What are your personal statistics regarding cure rates, impotence, incontinence?


8. Would you tell me again what is my prostate volume?
_______________________________


9. What is Saint B.’s “percentage of positive lymph nodes after prostatectomy? (% of patients
that have positive involvement after surgery)
_______________________________


10. What is my “total cancerous tissue length?
______________________________________

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/21/2010 3:41 AM (GMT -6)   
Great job Paelia!

You took out of this what Tudpock and I would both hope for.

I can answer a few of them, but you really need to ask these questions to your team...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4151
   Posted 5/21/2010 5:26 AM (GMT -6)   

Tony, I disagree with many of your comments on a number of levels but won't take the time to debate this with you.  I will say that your understanding about "intentions" of the post and any implications about being disrespectful because of treatment choice are TOTALLY inaccurate and off the wall.  Obviously some of us have higher expectations of our physicians than you do but that's ok...each to his own.  Nevertheless if even one new forum member got something out of this, as Paella seems to have done, then it was worth the time to put the list together.

Tudpock (Jim)


Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 5/21/2010 7:18 AM (GMT -6)   
I think Tony's answers were good, but also proved how subjective many would be, and that even if answered, would provide the average patient with limited use.

Why wouldnt a radiation oncologist be anything but an expert in their craft? Or a urological surgeon in his specialtouy?

We hear much about the need to see a prostat oncologist, but fail to mention how few there are in the country, and for most people, they dont have easy access to one.

We have heard so much here abut color doppler testing to it has almost become a "buzz" word here, but in reality most drs dont use them, value them,
and see limited use or value in them, and again, most areas we live dont have access to one even if you wanted it.

These lists have gone from a limited educational use, to almost being insultng to the doctor in question, I still see it as more dr bashing i disguise

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 - 4/23 put in

New Topic Post Reply Printable Version
51 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Wednesday, June 20, 2018 1:56 AM (GMT -6)
There are a total of 2,973,636 posts in 326,262 threads.
View Active Threads


Who's Online
This forum has 161073 registered members. Please welcome our newest member, GotGuts.
301 Guest(s), 2 Registered Member(s) are currently online.  Details
UC_from_39, Tall Allen