Need help in Wayne's World

Thanks to everyone who has responded so far. I am not that fast at typing so i (Hen Peck). I am reading every post and letting it sink in. I guess it must be the way i posted that has some confused. I had chemo that started on 4/20/07 and ended on 7/9/07. I do realize that time is going by since the end of chemo and that if i am going to have this surgery it needs to take place soon. I am schedule for Oct.22 if all goes as schedule.

Wayne, here is an article detailing exactly why you want an experienced surgeon .

Memorial Sloan-Kettering Cancer Center tracked the outcomes of more than 7,700 men who had their cancerous prostates removed between 1987 and 2003.

The bottom line?
This study was on prostate surgery, but what it teaches us is the same. Find a surgeon who is experienced and find a hospital that is experienced. Don't be the surgical equivalent of a crash test dummy.

Best wishes,

Zach

yes Rosemary it is kind of scary. I have also noticed quite a few from NC. I live in Raleigh and have not been to Dr. Pruthi at UNC. I did see Dr. Philip Walther at Duke and he is the Doctor that thought it would be best to remove the bladder ASAP without chemo or anything. I did not have a good experience at Duke. I have a good Urologist in Cary that wants to do the RC. I am sure he is very capable but just can't be sure. He really does not have any references i can talk with. I have seen another Uro in another state and spoke with many of his patients and most have good outcomes. Thanks for responding and best of luck to you Wayne.

Wayne, I'm not a doctor, I don't play one on TV, and I'm not going to second-guess the professionals that you're seeing.

But I'd like you to read one of our member's story which might help you make your decision:
blcwebcafe.org/stories/dan.asp

And I'd also like to reassure you that having your bladder removed is--and this might shock you--not such a big deal. I was 49 when I had mine removed last year and haven't looked back. I'm in better shape than I was before the surgery, and any slight inconveniences involved with the neobladder are more than offset by the knowledge that my cancer was removed to the best of the doctor's ability and the chances of it coming back are much smaller than if I'd chosen another path.

The odds are, for your situation, Rosemary is correct. You're going to end up having it removed. That will take a while for you to wrap your head around--it certainly did me. But, a year later, I have a different perspective. Now that I've lived with a neobladder I can see that my fear and apprehension was overblown.

I'm going to PM you my cell phone. Please call me if I can answer any questions for you.

Best,

Zach

Wayne,

Wow. We are getting so many people from North Carolina here. It is starting to get scary. I am in NC here on the Coast.

Did you see Dr. Pruthi in Chapel Hill? If you got an opinion from him, I think I would feel very confident in the guidance that he gave you. He was 100% frank with me, and I felt very safe when I had my biopsy there at UNC.

With your stage and grade, I do not see that you have much of a choice in the bladder department. I know it's easy for me to say, as I've been able to keep mine so far, but, I believe that you are better off without it. There are lots of guys here who have been through it, and I don't remember one of them saying that they regret it.

I've only heard good things about the surgeries done by Dr. Pruthi at UNC Hospital.

BTW, Dr. Pruthi told me, that if it was in the muscle "it's gotta go!"

Your new Down East BC friend,
Rosemary

Hi my name is Wayne and this is my story.

I am a 45 year old male and up until now have been very healthy all my life.

In March, 2005 went to ER with severe pain and having trouble urinating/CT scan showed nothing but enlarged Ureter and was diagnosed with a kidney stones. The Uro never looked in my bladder and said there was nothing he could do for me since he couldn’t see anything on the CT scan.

In 2006 started feeling nauseous in the mornings and having a lot of digestive problems and toward the end of the year started feeling burning at end of urination and pressure in rectum. The Doctors dismissed most of symptoms as nerves and gave me Klonopin.

2/7/07 found a new General Practitioner who gave me a complete physical and diagnosed me with UTI and gave me 10 days of CYPRO and was going to schedule appt for lower GI.

2/13/07 started passing little white chunks in urine, took sample back to Dr and he said some UTI’s take longer to clear up than others. Gave prescription for 10 more days of CYPRO. Said my white blood count was elevated and we would keep an eye on that.

2/17/07 came home from work urinating blood and blood clots. After 9 hours in ER a CT Scan showed a mass in my bladder. Told to go see URO.

2/20/07 went back to the same URO that I had seen in 2005. He diagnosed Chronic Prostatitis and Acute Cystitis, gave me 28 more days of CYPRO and said come back in six weeks and we will look in the bladder to see what that mass is.

2/21/07 went back to GP still urinating blood and asked to be referred to another URO.

2/26/07 went to the 2nd URO he looked at CT scan, blood work and urine, said get on the table. He did a cystoscopy and said I had a tumor and he would schedule surgery that week to take it out. He said you don’t mess around with stuff like this.

3/2/07 TURB (completely removed tumor) the tumor was size of golf ball with small tumors/crustation surrounding it. URO said he had to cut into bladder wall to get it all out………

3/13/07 pathology says “Transitional Cell Carcinoma, Grade III of IV, invading at least into the muscularis propria.” URO said need to remove bladder………

3/20/07 went to Cancer Center and the Oncologist recommended 4 cycles of chemo prior to RC. Said statistics show higher survival rates with Neoadjuvant chemo/RC.

3/29/07 went to Duke for 2nd opinion, URO said need RC right away, would not do chemo as he did not see limph node involvement.

3/30/07 Duke pathologist looked at original tumor slides and the report says “Invasive Urothelial Carcinoma, Grade 2/3, arising in high grade papillary urothelial carcinoma. Carcinoma invades muscularies propria.”

4/12/07 went for another opinion from Urologist/Oncologist at another local hospital said he agrees with having chemo prior to RC. They also looked at slides of tumor and the pathologist report says “Invasive High Grade Urothelial (Transitional) Carcinoma. Extensive smooth muscle invasion noted.”

I ask the third doctor if i could get a pathology report by sending only the slide without the original pathology report and was told that it is common practice to send the report with the slides. (This is very disturbing to me, since all reports seem to say basically the same thing.)

4/15/07 went to another local Oncologist and he said he would like for me to do chemo/Radiation. This did not sound like a good idea.

4/20/07 went back to Cancer Center/Oncologist #1 and started chemo………

5/22/07 went to another major University Hospital and saw a well known URO/Professor for another opinion. He said he agreed with doing chemo prior to RC and wanted me to come back for biopsy’s when chemo was finished. They also looked at the original slides of tumor and pathology says “Invasive High Grade Urothelial Carcinoma Extending into Detrusor Muscle”

7/9/07 finish chemo!

8/2/07 had chest scan and pelvic MRI’s done and both were all clear. “No evidence of metachronous, recurrent, or metastatic transitional cell carcinoma.”

8/9/07 went back to the major university doctor and had 6 biopsy’s and one of those was from original tumor site. He did cold cup biopsy’s which means he did not cut down into the muscle. The biopsy report says “Benign Urothelium and Submucosa”

The local URO and Oncologist still HIGHLY recommend having RC as they have all along……

The major university URO says if he were me he would have the surgery, but he is a surgeon and he is biased. He also said that one in three bladders removed did not have cancer that could be found after pathology. He also said that lately it seems that more do not have cancer than those that do after RC.

I am scheduled for RC at the major university hospital in three weeks and I really don’t want to have the surgery.

So, what am I supposed to do now?

I would really appreciate opinions on this because I am extremely stressed over what to do?

I know that everyone reading my message is not a Doctor, but I would like to know how others might view a situation such as this.

Thank you and God Bless, Wayne