Not pleased with my urologist

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/8/2009 11:33 PM (GMT -6)   

I’d like to vent a bit about my local urologist. Maybe some of you have similar experiences or maybe even some suggestions.

When my PSA started to rise, I got referred to a local urologist who had a good reputation. Well, before my first appointment, he scheduled me for a biopsy. This was even before we did a course of antibiotics followed by a repeat PSA (something I suggested, which I knew to be standard procedure). Needless to say, that rubbed me the wrong way. In retrospect, I also realize he is VERY busy, booked all the time, so perhaps he was just doing me a favor (or perhaps I was just another dollar sign part of the cash flow).

OK, so instead of staying locally I went to Ann Arbor (120 miles away) to consult with Univ. of Mich. Med Center. They are the ones who suggested the PCA-3 test and then a biopsy if it wasn’t good. I did that and as a result scheduled the biopsy. Meanwhile I had an appointment with my new urologist and he showed a flash of anger. Basically, he said "I don’t see why people need to go to Ann Arbor for a simple biopsy." Well, one of my reasons was that when I asked him about pain control during a biopsy, he dismissed me by ignoring the question, responding that it just took 20 minutes. In Ann Arbor, they were very compassionate and indicated if I wanted to they could do the sedation, although it wasn’t necessary as they do a shot of lidocaine. I only ended up doing the sedation because that was the quickest opening. But I digress. My local urologist said "what do you need me for." I told him I wanted a local contact in case of problems. He basically told me that if I have cancer, he should be the one to do the surgery (if that’s the modality of choice). If someone else does the surgery, he basically implied there is no room for him as my doctor. Now, let me add that despite what I’ve written, the guy is quite personable and I actually enjoyed chatting with him.

Now for venting times. This is my own life/body and it is a serious situation. I am going to seek what I consider to be the best medical care that is feasible. I’ll be darned if I am going to stay local when I feel I can get superior care elsewhere. In fact, I already have. I seemed to have survived the biopsy, they did uncover the cancer and in fact I learned about the PCA-3 test which could have saved me an unnecessary biopsy.

I do have a dilemma. Both Univ. of Mich. and Ford Hospital (my two possibilities for treatment at the moment) want me to list a local urologist. I am listing him for now. There is one other urologist in town with a good reputation but she requires a doctor’s referral and she is booked into April. I guess I will open up to my family doctor and try and get him to refer me to her. There are about 5 other urologists, all with the same group, and I have heard many negative stories about them. Even my trusted family doctor said to avoid them. Still, it is awkward asking my family doctor to now refer me to someone else, but I guess that's the only way.

An interesting sidelight. I found out a buddy of mine had a biopsy with this doctor and it was really miserable (painful). Only a numbing gel was used. He said he would do it the way I did if he has to do it again. That just confirms my gut feeling.

 

Comments or suggestions are welcome.

 

Mel

 


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/9/2009 2:16 AM (GMT -6)   
Compiler,
 
    Paul goes to the U. His surgery was done by David Wood. Wood came out of the Detroit Medical Center a number of years ago. These guys are somewhat mobile, probably due to the number of major medical centers in the Detroit area. Good Docs are everywhere.
 
Paul's original Uro at the U was a female but, the moment his PSA test showed concern we asked one important question; "if it was you or your father, who would you want as a biopsy specialist? We only got one answer; "Jon Wei." We then asked Doc Wei, "if it were you, what surgeon would you want? He gave but one answer; "David Wood." We asked the same question of a few Physician friends of ours and got the same answer; David Wood. We met with him (Doc Wood) and got straight answers right from the start. I know he thought I was a bit forward but, who cares? To this day he comments that he's sure I've already asked around and researched everything so why bother beating around a bush!
I knew he was a smart man..lol
 
Now I am not going to say who might be better than another really. There are so many good surgeons to choose from IMHO. My personal method of choosing a Doc is to first see who has the longest line standing outside his door. I want to know who the surgeon's, surgeons are. Who would a man of the same age as my husband want working on him?? We don't choose a specialist for his/her bedside manner....ever! I find most really good specialists were probably studying the day they taught charm in med school anyway. It kinda gets down to, if momma don't feel the vibe, we tend to choose someone else. I can actually tell if there is a going to be good Physician / patient relationship between Paul and his Doc just by watching their expressions. If the choice is a good one and he's confident, I only go when I'm needed...much to the relief of his Doc's probably.  Good luck and hang in there.
 
swim
 Hilarem datorum diligit Deus


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/9/2009 7:13 AM (GMT -6)   
Howdy, Mel que pasa?   Guess what I would tend to say about the uro-doc (locally)?
He likely he bitter 'caus he feel u  took you car to other shop and they are workin on it an gonna make all the money  (LOL- special effects wording added). Same idea, it's a prognosis of: envy, jealousy, pride, control....same things that make man, less than Godly in deeds of course, maybe I am wired differently (LOL) and sing praises that I am. Doc probably in his mind believes he owns your medical future, nice thought huh.  (I'll stop there)
 
Find another, why can't you just hire one at the same hospital group and travel occassionally? If you have Blue Cross traditional you can hire anyone without referrals.
I fired my uro-doc but it was after 2 yrs. and 3-strikes rules, should have dumped early on but probably that was my fault in trusting too much, now I am very skeptical based on the(number of) things I have witnessed from various docs, some are fab and some are drab. The hardest part is finding out who's-who in ones backyard or large backyard.
 
You have Dr. Strums book 2nd Edition(not intending to be a smart-_ss) but let's  re-read towards bottom of page 15 and also for others read pages 12-15. This is what we patients need to know and should come to know. This book is well written and some PCa folks call it their Bible as it helps them make the journey.
 
The blood in urine thing did not even happen in my travels with the biopsies, must have super fast clotting time or some contributing factor. So looks like that varies alot and yours should clear up pretty soon.
 
So Mel, what do think about this dragon of PCa now that you have read, posted, probed for questions and answers????  Even though alot of us have already travel these roads and made decisions, we can always learn something new at any level and from anybody. It might be helpful to know your perspective even though you are still in the sorting out and decision processes. I also went for an opinion at U of M and met radiation onco-doc (Sanders-? liked him and he called me at home when I was not even a patient to answers questions A+ for that) and met an onco-doc (female)...I probably should have walked in the door backwards as this was another opinion(s) with the DRE added (LOL).

Post Edited (zufus) : 12/9/2009 6:13:55 AM (GMT-7)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 12/9/2009 9:19 AM (GMT -6)   

Many - maybe most - doctors see you as a cash cow.  Fire as many doctors as you need to fire whenever you need to fire them until you find one you are comfortable with.  And if he gets too complacent, fire him too.

You have cancer.  What do you care what other people think?
 
Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
 
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 12/9/2009 9:35 AM (GMT -6)   
Gee... Zen you're harsh. ;-) I thought my Uro took care of me because he valued me as a person and I was his only patient. Oh look! The tooth fairy just left a quarter for me on the kitchen floor.
Have you ever had a roof put on your house? You ask around, get quotes from two contractors and then pick the guy you like best based on whatever is important to you - lowest price or better shingles, cleanest truck.. whatever. If you give the job to Angelo and the roof leaks, you can't call Tony to fix it under warranty. In fact Tony is still a little upset that you wasted his time with the extra contract bid. He won't even want to talk to you any more. "Wataya callin me for?"
I know a roof is not the same as the walnut. After all you get two tries with a roof. But there are some similarities.
Mel, Stick with whomever you think does the best job. Exactly 30 minutes after your walnut plops in the bio-hazard bucket your relationship with the surgeon is over. Then it is all follow up with the staff.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/9/2009 11:37 AM (GMT -6)   
Swimom:
 
I found your post very interesting. I have seen John Wei over the years due to BPH/prostatitis. When this issue started, I saw Dr. Stephanie Meyers at Umich because that was the quickest I could get in. I liked her. She did the biopsy which found the cancer.
In my research, Dr. Woods' name came up quite a bit as a good, experienced robotic lap. surgeon. I will be seeing him Monday morning. I'll also be seeing a radiology guy and Dr. Hassain, an oncologist.
 
I'll be seeing Dr. Menon at Ford Hospital on Wednesday. At this writing, he is my first choice, but I'll know more after I see everyone. But it's good to hear good things about Dr. Woods.
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/9/2009 11:55 AM (GMT -6)   
Zufus:
 
I enjoyed your remarks. Who was the female onco doc you saw at Umich? I wonder if it is the one I am seeing on Monday.
I've read the Strum book (at least much of it -- it will require plenty of rereadings). His advice is on target and I knew that anyway. I would not keep a doctor that I am uncomfortable with. Yes, I could perhaps hook up with a Umich urologist, but I really do need someone local. If I'm having a problem, I don't want to try and make an appointment and drive 2 hours to get there. I need to have someone locally.
 
You asked about other impressions, what I've discovered. As I posted elsewhere, I am still struggling tremendously. I'm fine at work. I love teaching and I leave my problems at the door. But other than that, this is consuming in every way. I wake up scared, disappointed that this nightmare is real. I've spent almost all my time reading and learning. Evenings are not much better. I also am anxious to get going on this. I feel very fortunate that despite the panic I have been able to use my brain in making plans and, eventually, making treatment plans.
 
My biggest fear of all is that this is an aggressive cancer that has already escaped the prostate area confines. I won't know that until at least after the surgery. I've learned what I've known: this disease will change a life for a long time. I will be dreading every PSA test. If I get some bone pain, you know what I'll be thinking/feeling! Basically, a lot of what I've known to be true about cancer has suddenly become up close and personal.
 
Incidentally, one other tidbit. I have read that many victims have the "why me" reaction. That has not happened to me. But something similar: I've done everything right. I've had my annual physicals, PSA tests, etc. So I do feel cheated that my biopsy shows a G4+3. That ticks me off!
 
Mel
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 12/9/2009 12:08 PM (GMT -6)   
Geez,  the way you guys trash most doctors, I am surpised you would find anyone that would be willing to pull a splinter from your finger if needed. I think you send a terrible and paranoid message here, especially to our new guys, that you shouldn't trust your doctors, and that doctors are evil, and doctors only want your money.

Are either one of you licencesed doctors, or even a nurse? Do you have any creditation in any medical field? Your posts come across like you have some special inside medical knowledge or that you know more than the professionals.

The average every day "Joe" that comes to HW, fresh with a PC dx,is  scared, unsure, uncertain what to do. Its hard enough for many just to go through the normal process of DRE, biopsies, and other tests. Then most have the same basic primary treatment paths to choose from.  There are exceptions to this, or course, nothing is really every normal with PC.

I can't see introducing conspiracy theories and anti-doctor rhetoric to the mix. All that does is cause more fear and uncertanty to people who are already unglued from having cancer.

I think someone needed to say this, and if I get slammed , then so be it.

Most men just can't pick up and fly to Europe for a special test, or trash 5 doctors in a row just to find one that agrees with their thinking. There are many fine local hospitals and radiation clinics, with good caring people all across the country. There are many skilled, compassionate and dedicated doctors to choose from.
They want to get this cancer out of them, or at least under control.  They want to live out their lives, with their loved ones.

For the average guy, the average couple and family, with only so much resources at hand, and logistics being considered too, the normal choices they face are legitimate and they should not be discouraged from doing so.

 

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place

Post Edited (Purgatory) : 12/9/2009 12:20:07 PM (GMT-7)


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 12/9/2009 12:18 PM (GMT -6)   

Purgatory,

You've recently been through more than any human should have to go through, so I will not respond to the comments made in your 4,072nd post.

Zen9


No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 12/9/2009 1:18 PM (GMT -6)   
I think zufas has brought tons of good and hard to find information to this site and to hundreds of people here, and that is good, and it is helpful. My tone has to do with what seems to be as being endless doctor and treatment bashing in general. That was my intent in the post. And I think my general advice to our friends here is as sound as any other poster. I just don't go into the real medical specific advice, as I do feel not feel qualified to do so. That is what our doctors and specialists are there for.

Let's not make people afraid of their doctors and encourage them to second guess sound medical advice, that is my point.

David in SC

P.S>  And please try hard not to twist things to make it look like an anti-zufas posting.  It's not the case, and you know it.


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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/9/2009 1:33 PM (GMT -6)   
Compiler,

I had a similar situation, only my uro is a young guy, who is just learning DaVinci. When he told me my biopsy results, I never hesitated, I just said I would like a copy of my slides, and records, I am going to Cleveland Clinic.

But my uro has been real supportive, I see him every 3 months for PSA, and whatever else I need , such as Trimix scripts, Cialis samples, etc.

At this point, you don't need the best uro in Michigan, so if your initial dr is a little miffed, maybe you can get another doctor in his practice, or just find someone who can do the routine Uro stuff. I went to Cleveland for follow ups, and if i have anythig that I deem serious, I would go to Cleveland, as I would expect you to go to U 0f M.

I would imagine tho, that after a few months, this guy will forget about it, and do whatever you ask when you have an appt with him.

I agree with David that we all are a little guilty of accusing doctors of being money grubbing people who don't care about us as people. I think if any of us spent a 50 or 60 hour week with these guys, we would probably change our opinions. Fact is, most of them could have retired many years ago because they have enough money. Must be soemthing elso that keeps them going.

I know the PCA3 test could have saved you from a biopsy, but it didn't. You have what I have called a fairly "Standard" case of PC that doesn't require a whole lot more diagnostic work. I am confident that the surgery, or the radiation if you choose to change course will be very successful for you.

Good luck.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/9/2009 2:14 PM (GMT -6)   
Ohio,

What I said was, altho a PCA3 test could have saved him having a biopsy, it didn't because he needed one anyway. Most of us would have had a biopsy no matter what the PCA3 test said based on a 4.19 PSA. Does that make the PSA3 test a very valuable test, and was it worth every dollar his insurance spent ?

I am not saying that we should not have biopsies, I am not saying that some cases call for more exotic testing like color doppler and combidex, etc. What I am saying is that many, probably the majority don't need all the testing to arrive at a good treatment decision.

You have repeatedly talked about doing a lot without financial resources. If we don't need these tests, why should we, or the insurance, or someone get them ? So we can go ahead and make the same decision in many cases that we would have anyway ?

Just a question .
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 12/9/2009 3:04 PM (GMT -6)   
Can you guys start one single separate thread so you can bicker back and forth on the issue of the day and not pollute other people's threads...the fact that the majority of posts are consumed by a fewe guys bickering back and forth endlessly is the worst part of this site.

Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 12/9/2009 3:09 PM (GMT -6)   
Prior to treatment I scheduled surgery with a local doctor that I later cancelled.  I cancelled about 2 weeks prior to surgery.  He called me personally and wanted to know why.  I told him I had decided to have the surgery done by a surgeon who specialized in the technique and had more experience. 
 
I received a certified letter from the local guy that same week telling me not to come back to him for any post surgery treatment.  Very unprofessional I thought.  Frankly, it made me very glad I didn't use him.
 
With exception, I find physicians to be arrogant.  Probably the nature of what they do causes this to happen over time.
 
 
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 12/9/2009 3:12 PM (GMT -6)   
Dave,

THat's a terrible story to tell. I couldnt imagine even a jilted doctor sending a letter like that. Hope you saved it. All he did was verify what you were feeling about him. Extremely unprofessional. Good call on your part.
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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/9/2009 3:17 PM (GMT -6)   
smilewinkgrin ompiler said...
Swimom:
 
I found your post very interesting. I have seen John Wei over the years due to BPH/prostatitis. When this issue started, I saw Dr. Stephanie Meyers at Umich because that was the quickest I could get in. I liked her. She did the biopsy which found the cancer.
In my research, Dr. Woods' name came up quite a bit as a good, experienced robotic lap. surgeon. I will be seeing him Monday morning. I'll also be seeing a radiology guy and Dr. Hassain, an oncologist.
 
I'll be seeing Dr. Menon at Ford Hospital on Wednesday. At this writing, he is my first choice, but I'll know more after I see everyone. But it's good to hear good things about Dr. Woods.
 
Mel

Although I thought Wei did a fine job, my impression of him is, his research means more to him than the people he treats. Within meeting Paul for all of 2-3 minutes he began selling a biopsy sample (4 addititional cores) release form like some  used car salesman. Wei was conducting core study at the time and spent more during the visit interviewing Paul's genetics than anything else.  Paul is an interesting study case because of his history with testicular cancer but gee; shouldn't the man at least buy dinne first? shocked Poor guy was terrified. Of course, big tough firefighters won't show fear however, the Doc knew better. His focus was elsewhere....... so is our money. 

Once the biopsy was done (and done well IMO), we moved on to finding a surgeon. Paul did see a radiation Onc but, he isn't a radiation candidate again and we knew (the Onc did not) it before the consult. Sometimes it's nice to find out what another specialty has to say. That Doc's opinion; surgery was his best chance for curative treatment. Johnathan Epstien told Paul the same thing. Nice man by the way..Epstein. We received a lenghty call after paying the man for a second biopsy evaluation and only getting a half-arsed report. LOL...I called his office and cited one of his own lectures on appropriate pathology reporting! That drew his attention apparently.

Menon was an option but why? Wood came out of that same pioneering system and his focus has really been spent on cures for urological cancers for a long time. Where he lacks a bit in the warm and fuzzy department, Wood rates high in other communication skills. Paul felt comfortable right away. And that's it...smilewinkgrin


 Hilarem datorum diligit Deus


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4278
   Posted 12/9/2009 3:24 PM (GMT -6)   

Hi Guys:

Honestly, I always enjoy these threads where there is a little passion...maybe I'm just a sadist at heart!  Actually, I think it's just in my nature to admire people with strong opinions who are not afraid of a little confrontation because that approach seems to smoke out the answers a little better..

Anyway, in that same spirit, here is my commentary to some of the comments on this thread:

1.  Mel, if I described my uro the way you described yours, I would not be going back to him.  However, you probably do need a local urologist if you have treatment 100+ miles away, if only for emergencies (read some of David/Purgatory's history to know why you MIGHT need someone local).  So, I would suggest you have someone local even if you get treatment elsewhere.

2.  Also, Mel, you may THINK you are being open about evaluating your choices, but it does not read that way (at least to this reader).  You have taken great pains to learn about surgeons Drs. Woods and Menon but, when talking about a radiation consult you say, "...a radiology guy."  The choice is yours but, IMHO, you owe it to yourself to be open to other treatment options or why bother?  And, if you want to be really informed, have you thought about PBT, TFT or HIFU?  Why not expand your universe a bit rather than chanelling down the surgery route.  Finally, if you are leaning toward surgery...good luck.  But I would recommend you take the time to post on this forum "why" that is your leaning, and give some opportunity to folks like me and JohnT to play devil's advocate, even if only to give you peace of mind.

3.  I personally don't mind hearing the skepticism about physicians that some members have.  I think that provides balance to the new reader.  There are plenty of people on here who say, "find a physician whom you feel good about and stick with him/her".  That's not the only way and I think it brings balance to hear both sides.

4.  David, you know I love you, but it did seem that your pre-edited post was aimed at zufus.  If so, I have no problem with it...you and zufus can certainly agree to disagree.

5.  Goodlife, the problem with not doing tests like Color Doppler and not seeing multiple docs is that it's tough to know what is an exotic case and what is not.  Those who recommend additional tests are just trying to help folks get the best diagnosis possible.  Personally, I "think" I'm ok and I didn't have the PCA3 test or the Color Doppler, but if I had that advantage of being on this forum for longer pre-treatment I would have known about them and had them.  Most of us only get one chance at this...and I know all of us who talk to newbies are just trying to help them get it right.

6.  Andrew, in the infamous words of George's father on "Seinfeld", Serenity Now........

Now that I have proven to be an equal opportunity offender, I think I will go back and read some of Jeff's posts about weighing pee pads...seriously, that is the greatest thing ever and if I was a post surgery guy I would probably be doing the same thing!
 
Respectfully,
 
Tudpock
Age 62, Gleason 4 +3 = 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 12/09.  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 : 25394
   Posted 12/9/2009 3:59 PM (GMT -6)   
Tudpock,

I edited it because when I re-read what I had written, I was combining two different thoughts about two different subjects in the same post. Call it a brain mix up.

The original passion was about the doctor bashing mentality that I still think gets over played here, and I still think that sends the wrong message to the average patient, who has enough to worry about. Most of us aren't smarter than our doctors, though we may disagree with their methodology and procedure.

I say again, Bro. Zufas still manages to bring a lot of good info to the PC table, not a doubt about that. I have no beef with him. I respect his input for the most part and think it is helpful.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/9/2009 4:11 PM (GMT -6)   

David:

 

You make some excellent points regarding the trashing of doctors. Frankly, I have been pleased with almost all of my doctors over my entire lifetime.

 

However, David, I have to disagree with you. The implication of your statement is that we should just be quiet about our negative experiences with doctors because it may impact newbies in a negative way. It seems to me that it would be helpful to share all experiences, good and bad. You have shared many of your difficulties with us. I'm sure it may panic a newbie to read such stuff. I don't see you refraining from posting your honest experiences, and that is how it should be. In fact, we all need support, and once in awhile that is ALL we need.

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 12/9/2009 4:24 PM (GMT -6)   
Mel, I never said anything about not reporting bad doctor reports. I feel my whole point was missed, or I just didn't state it clearly, there are some that basically make it look like most if not all dr's are bad news, and that patients should question eveyrthing they are told.

That's a big difference there. I am a big believer in reporting the good news with the bad. Just because I just experienced a rough time with salvage radiation, you don't hear me discouraging a single person from going that route. What I went through was just how my body reacted to it. If I were trashing radiation because of my hard experience, then I would be wrong for doing so.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 12/9/2009 4:28 PM (GMT -6)   
Man, if I was quiet about every Doc I know, I'd be a mime!!
 Hilarem datorum diligit Deus


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/9/2009 4:40 PM (GMT -6)   

Tudpock:

 

Thank you for your comments. Yes, you read my post correctly. So, let me elaborate. First of all, there is no doubt (as you aptly mentioned) that at this point I am predisposed to the surgery option based on my own reading/research. HOWEVER, there are probably some things I haven't thought of. I fully intend to approach Monday's consultations with an open mind. I used the phrase  "radiation guy" because I just don't remember his name. I have it listed in my paperwork but I've just been too lazy to move my butt and get that information, since it is not relevant for purposes of this discussion. I will be most attentive on Monday. It is possible I will change my mind after meeting with the experts. In fact, one fear I have is that they will recommend both surgery and radiation to follow immediately.  I hate to use all of my curative bullets at once!

 

You asked for my reasons for electing surgery. Here are some, in no particular order:

 

1) Psychological -- get the darn thing out.

2) If I do surgery first, I have radiation as a backup if surgery fails. The reverse is much dicier. If I do radiation first, the surgery becomes more difficult and it may be impossible to do a good pathology workup after that follow-up surgery.

 

3) side effects. Yes, with surgery there is the incontinence issue and ED. The ED part remains a non-issue for me. Again, that is just ME. It is not on my radar. My wife agrees that should be a non-issue compared to the main issue of getting rid of the cancer and the incontinence issue. However, most likely the incontinence issue will improve over time. My understanding of radiation is that these issues will probably come up later over time and when they come up there is little that can be done. In other words there is more of a risk of permanent side effects, over time. Also, over the years I have had serious intestinal problems. Radiation has a higher probability of exacerbating those issues. On the positive side, radiation is not surgery. So, less morbidity there. It is an easier treatment with less disruption.

 

Anyway, those are my reasons. I may have forgotten a few. Feel free to shoot them down. If I am incorrect, it would be very helpful to know about it!

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/9/2009 4:46 PM (GMT -6)   

Ohio:

Can I count my wife as a tape recorder? I'll be taking good notes!

Meanwhile, I am still trying to come up with a list of really good questions.

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/9/2009 4:47 PM (GMT -6)   
Tud,

I hope that all of us can view these discussions as thought provoking and stimulating. I know we can get a little personal tone going on here, and sometimes we use stronger language than is necessary, but if someone doesn't ask the stupid questions, how can we get some of these issues out where we can examine them.

I think that probably none of us is 100 % correct ( especially me ), but that the truth lies somewhere in the middle of all these discussions. I take none of it personally, I am just trying to ascertain what is a reasonable approach to PC.

I am also trying to determine of the PSA3 is a worthwhile test. The reports that I have seen make it more dubious than PSA. The margin of error seems pretty high for me. If it really could prevent needless biopsies, I would say OK, but for me, and probably for most malpractice minded docs, we are going to get the biopsy anyway if we have a 4.9 PSA at age 63.

Thanks to all for engaging. I personally do not consider it bickering, altho some guys get pretty close to the edge on that .
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/9/2009 5:33 PM (GMT -6)   
Goodlife,
The PCA3 test was only one of many data points I used to arrive at a decision. Mine was 41, 35 being high normal. There is some agreement that PCA3 may indicate agressiveness and this was one data point among others that pointed to my PC being non agressive. Having a psa of 40 and a 4+3 which indicates an agressive PC, the PCA3 was one of 5 other other pieces of information that indicated non agressiveness. Then I was able to downgrade my treatment options from HT and full body radiation. This is one way it can help.
In Compiler's situation his PSA3 indicates agressiveness and he needs other data points to confirm or disprove it. Right now there are 3 data points, high number of positive cores, and a 4+3 Gleason which all point to an agressive PC. The one data point that is missing is if it is contained. This is what I would be working hard to find out either with a color doppler, MRIS, PAP, or plodgy anaysis or all of the above. Once I had this information then I could determine the best treatment or combination of treatments.
Mel, sorry to use you as an example, but it also answers your question as to what I should ask my 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

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