What are the chances of a Person being wrongly Diagnosed?

Alice, I couldn't remember who had said they knew the cancer was back because of there being blood in their urine until you posted this yesterday. "I know the cancer is back because of the blood in the urine." It is good you have your appointment in 6 days as most of us were instructed to come in immediately if there is blood in the urine if the cause wasn't from a recent treatment or surgery. Be open to driving or going longer distances to find a urologist that you feel a confidence. I currently drive 2 1/2 hours to mine here in VA. The first urology group I saw in Texas was at a major cancer medical center 3 hours drive from my home. There are others that drive up to 5 hours and those that even fly all over the country to find a center and urologist in whcih they feel confident. Here's hoping you have a good rapport and confidence in your newest urologist. Rosie Ambs

Hey Alice,

I would be less worried, knowing that the two more recent tumors were low grade and stage. Tumors may be quite large and still grade1, and that's the most important factor (grade) when you talk about superficial tumors.

Wishing you the best with your follow up.
Wendy

Alice,

It is very hard to find a perfect Doctor. My Doctor is very smart and did his residency at Duke Medical, but, when an adverse reaction to BCG occurred to me on his shift, well, I can tell you that I had to do my homework and convince him of the evidence that BCG was causing the problem. It was a tough fight. He did finally concede the point based on the evidence that I gave him, and now we get along just fine. Mutual admiration.

It sounds like you are worried that you may have been misdiagnosed. I would be willing to bet that your cancer is just about the stage and grade that you have been told, though there is always a small chance that a mistake has been made.

It also sounds like you are having trouble finding a doctor that you feel comfortable in putting your faith in.

The best advice that I can give you is to be proactive in evaluating your Doctor. If a doctor doesn't encourage you to get a second opinion, then the best idea is to shop around for a new doctor. I feel that strongly about second opinions. That is just one criteria to look for.

Anyway, we are here to help if we can. I'll be crossing my fingers for you.

Your BC buddy,
Rosemary

I want to thank each and everyone of you that responded. I have to admit that I really am running scared here. I do meet with a new URO on the 18th, but just doesn't seem to be getting here quick enough. He is a new URO and probably the last one to be found around my area, so please, keep me in your prayers that this will be the one I have been needing.

I was just soooo unhappy with my last URO. One that would have the same response WITH every question asked, "It is not related to the cancer nor to the treatment."

Well, I KNOW he was wrong with information that my dear friend, Pat, found for me.

So far all I have been able to access are reports from my last two Cysto's, but my very first one, May 05', is the one I am mostly concerned about when the tumor was described as the size of a chicken egg and he was so worried it had already been invaded. I do remember though when he got the biopsy back that it had not, but do not remember him discussing the grade or stage. I have just been so sick and hurting so much since diagnosed that I really am worried. I know the cancer is back because of the blood in the urine. Even if they are low grade this time, how am I to know if it has spread from the first time or not?

This is what was on my reports received from the last two TURB's:

Posterior and Posterior Dome, Non-Invasive papillary urothelial cell carcinoma, Grade 1, 0.4 cm

The time before that it was left superior lateral: Non-Invasive, low grade papillary transitional cell carcinoma.

Thank you again to all of my fellow warriors of BC. I just don't know what I would have done without this place.

Alice

According to statistic, most people are initially diagnosed with non-invasive superficial bladder cancer which in most cases means it did not invade the muscle. There can, however be some invasion into the lamina propria that is where you get the T1 grade. The type and grade are usually stated on the pathology report although I have seen some reports that just state it as urotherail cancer and the grade. Most cases are either TCC - transitional cell carcinoma or CIS - Carcinoma in situ. There are about 14 other types of bladder cancer other than those two. There are also times when the type is stated as papillary transitional cell carcinoma. The first two years of careful surveillance through cystoscopy and urine cytology or fish tests establishes a more complete history of the initial diagnosis. Most recurrences are of the same type and grade as the original but some do progress and invade. What is important to establish is that there are more aggressive types and grades of bladder cancer initially diagnosed as non-invasive superficial bladder. The word non-invasive or superficial is incomplete without the knowledge of the type and grade and the history associated with that type and grade. I got four opinions when I was initially diagnosed and continue to find additional opinions based on my seven year history. Rosie Ambs

Hi Alice,

As far as wrongly dx'd....I think it happens alot. I also believe some urologists make a poor reccomendation on treatments at times. My Uro recommended BCG on Jan 29th 2007...I was staged P3N0MX March 13th 2007. Had I not sought another opinion I would be much worse off than I am now. Perhaps that there are so many variables left to the subjective opinion of a few.....
1. How the pathologist interprets the cells and declares the stage
2. How the Uro's opinion influences the treatment plan
3. Then after the pathologist and Uro have offered subjective info - usually an oncologist throws in their 2 cents

In my particular case, the pathology report said high grade - no contest. But it was understaged. The pathologist could only stage based on what material was there. Uro did not get clean margins so the patholgy stage was not accurate. The pathogist did NOT add that to the pathology report - I talked to the pathologist to learn that.
As far as the Uro's plan for BCG - he has been a uro over 40 years and likely is not as current as I would hope. He was even upset that I persued a 2nd opinion. After the RC pathology report, he changed his tune tho and was glad I had sought another opinion. And so was I.
I would encourage all to get 2nd opinions - just to confirm even on superficial bc. It is by far better to get confirmation than to be wrongly dx'd. The patient has too much at stake here on this stuff. Once there is confirmation on a superficial or non-invasive bc, there would be no harm & no foul. We get 2nd opinions on many major car or home repairs....why not this? Being sure of what you're dealing with is vital.
God Bless all 949 of us, Holly