What are the chances of a Person being wrongly Diagnosed?

Holly, there is no way you could ever offend me with your comfort and support. Thank you so much for your understanding and sincerity.

If there was only one thing I have ever learned in life, it was how to be a survivor. The only way I could have survived life was because of my faith in God. He has helped me overcome many, many obstacles and has given me the strength to overcome them each time. In one of my last post, I mentioned that I feel everything happens for a reason. I was meaning that God has his plans for everyone in life, including mine. Of course there are times I grow weak and throw a few bad words at him, but he understands me and just lets me get it out of my system, lol. It is not God I have problems with, it is the way of life many people have chosen and our system. The last two URO's could have cared less about me. All they wanted was their pay. I went into teaching because I truly wanted to give children a life time of opportunity and because I care about theirs and our future, not for the money. If it would have been for the money, I had enough college hours to have been a doctor myself.

Anyway, Holly, thank you for being here for me and for the encouraging words of wisdom. It truly means alot.

I would say God Bless You, but it sounds as if God already has

Your friend,

Alice

Hi Alice

Coming to terms with the "C" word is difficult for most of us, even if it isn't life threatening. And as if what it does to the body isn't enough, it manages to tangle up for a while atleast a good deal of everything else in life. I am sory to hear how it has affected your work and finances. I can so relate.
My personal opinion on misdiagnosis is simply just that....my own personal opinion. As long as all Drs are human as we are, and diseases are unpredictable I believe the potential is there. A confirming opinion on most things is smart, and regrettably finances/insurance is not always there for it.
Which brings me to faith. With all the problems I have faced in life, my faith has only grown. Sometimes I have stood far too long at a door closing before I looked for the window He left open for me. But eventually I have seen His grace and intervention atleast enough to know He was always handling it. Even now. In just the last few days I have really come to terms with trusting Him in this part of my journey. And it has freed me from the fear, and to be still - knowing He is God. Faith.
Hope I haven't offended. Please forgive me if I have or when I do. I would certainly not choose to offend.
God Bless us all, Holly

David,

Sorry I forgot to respond to your health issues. I was so glad to read your post and was happy that you let me know the diagnosis. I was very concerned.

I am so pleased you made an appointment with you doctor and found your troubles. I really hated to see you in the pain that you were experiencing.

Thank you again for letting me know and hopefully things will go alot smoother for you now.

Take care of yourself,

Alice

Pat, Holly, Rosie, Rosemary, Wendy, David, and dmartin,

I just can't thank you all enough with your thoughts, information, concerns, and time that you have given me.

Yes, I am very concerned about a misdiagnosis, but I know all will turn out in the end. I really believe everything happens for a reason even if it is not.

I will try to explain my concerns.....

I also started another topic asking if anyone has experienced the treatment of Thiotepa. Wendy responded and really made me see what was really happening.

When diagnosed, I had lost my job of employment along with my health insurance. I thought no problem, I would just apply the following year for another teaching position. Well, three months had past and I hadn't fully recovered from my last surgery. I did apply for a couple of positions the following year, but both places could see I was still ill, asked about it, I told them, and they were very honest and very caring in saying they were very sorry, but they needed someone that would be a little more dependable.

By then, it was time for my next cysto, had more tumors, they were removed. Same story for the next two years.

During this time, I had to apply for the state health insurance for low-income. Was accepted and was being treated for two years. The first year, I never received any treatments what-so-ever. I got behind $245.00 in payment to my Uro. I went in for my next cysto, already seeing the blood, and they refused to see me unless I could come up with the full $245.00 in which was impossible for me at the time, so needless to say, I had to find another URO that would accept me.

I found a new one and he has treated me for the last year. He did treat me with 6 sessions of Thiotepa and he treated me as if I was just a pain in his bladder. NO bedside manners, no time for me, and only one response when I was telling him my symptoms, "It has nothing to do with the cancer or treatments."

Like Wendy said in her response, Thiotepa I think may be one of the least expensive intravesical chemo drugs because it's been around so long. Well, I am soooo sure she is right and this is why I have been treated like I have been because of the insurance I was on.

Now, I have none. When I was suppose to take my second round of treatments, the state health insurance refused me.

I feel I have been left out in the cold with the vulgers just hanging over waiting for me to die.

I have worked so VERY hard all of my life. I had paid my taxes every year. I raised three children on my own without Child support or any help through the state. I put myself through college and made something of myself, but this is all unknown to those in which I try to receive help from. They can only see me as, I guess, a bum, even though I started a small business just to have some sort of income, not worrying about having to lose my job from missing so many days of being sick, and that way I can come and go when needed. To receive any kind of help, I have to be pennyless without any type of job. I WON'T LIVE THAT WAY! I refuse.

I truly am so sorry to reveal all of this to all of you, but I just don't know who else would understand.

I love you all and thank you all for what you have done for me and have given me.

Your Friend,

Alice

Alice,
Unfortunately, misdiagnoses are quite common. Yes, the cancer can actually be invasive even if diagnosed as non-invasive. Now, the next question is how critical is a misdiagnoses? If your diagnoses is low grade papillary, the consequences of a mistaken diagnoses are much less severe. But if you diagnoses is T1G3 (or if the doctor misses the presence of CIS), the consequences can make the difference between the patient being cured or not. Of course, even if the diagnosis is correct, if the urologist and/or patient choose an inappropriate treatment path, the results can be the same as a misdiagnosis.

Misdiagnoses are due to many reasons; urologists not taking a sufficiently deep biopsy sample, misreading of the biopsy slides, inexperience, incompetence, and simply the fact that it is IMPOSSIBLE to biopsy 100% of the bladder. The presence of cancer can be, and is, missed. That is why it is so important to go to the best urologist possible. Also, my two cents on second opinons is to seek out urologists who have significantly different treatment philosophies. For example, if one consults with 5 doctors, none of who believe in using mitomycin C, what's the point?

I've copied the following from "Indications for Early Cystectomy" written by Dr. John Stein:

"Tumor stage is currently the most current determinant of therapy, making accurate cllinical staging critical in the treatment of bladder cancer. Despite the best clinical efforts, even with advanced histopathologic evaluations and imaging technicques..., significant clinical staging errors occur... Errors ranging from 34% to 62% have been reported in several large studies. Furthermore, patients clinically understaged obviously experience a worse prognosis...".

If your cancer is papillary, you are fortunate. Just be sure to have your slides read by someone else at a major cancer center (Sloan Kettering, USC/Norris, MD Anderson...).

Don't mean to scare you here. Just be sure to read the literature yourself and to seek out the best docs possible.

Alice,

It sounds like you are going through a very stressful period with the pain and emotional stress of being unsure about your doctor. Hopefully the new Uro will be someone you can completely trust (while still staying informed of course).
I posted last week complaining of blood in my urine and did go in and see my Uro yesterday and he said I have a severe bladder infection (which has likely been there for over 6 weeks) which he says can cause the bleeding and pain. The sulfa antibiotic does seem to help. Sometimes the simplest solutions are best.
Here's hoping your cysto on the 18th shows no new problems. We all know how stressful having to wait for an answer can be!
Take care, David