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What are the chances of a Person being wrongly Diagnosed?

12 years 9 months ago #7124 by Cynthia
Gman, Rosie is right whenever a path comes back with anything have it reviewed by one of the top places for that particular cancer. They have pathologists that look at more blc in a week than a local pathologist will see in a year. Pathology is part science part art and depends on the experience of the practitioner. A good percentage of the time it will come back with a report that looks a lot like the one you are holding. It is insurance to make sure and worth the piece of mind. All you have to do to send the samples is call and get the information at Anderson as to who and where to send it and then go to the pathology department of where you had your TURB done and sign a paper giving them permition to send it and then tell them where. Make sure that everyone knows who gets the results. That would usually be your Uro. I will usually write out what I wish done print it and leave a copy.
As for the mitomycin talk to your Uro about it now and let him know that you wish it done if you have another TURB. If he is not using it ask him why? There is good evidence that it does help cut back on reseeding. But it is very expensive to use and can have some side effects so not all Uros use it even the best of them.
You are doing the right thing making yourself an informed medical consumer we are our own best advocates. Take care and I hope that all of your path reports always say low grade.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 9 months ago #7094 by Rosie
Greg,
I am answering your prayer ??? - a second opinion on the pathology slide from a pathologist at MD Anderson would be good. Hopefully it will verfiy and ease your mind. So much on this forum has shown concern about the pathology report being understaged but it is also important to be sure it is not overstaged if there is scheduled some radical type treatment or surgery as a result of the initial staging. T1 is one a staging that needs to always be verfied in my opinion as the follow through treatment for that stage varies between urolgists. Rosie

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12 years 9 months ago #7092 by Gman1979
Thank you Rosie for the advice. After re-reading, I don't want people to think that I am that complacent about it. Dice rolling is probably not the best example to use. From what I've read, my urologist is doing what he should. The use of mitomycin immediately after TURBT is mentioned by some but not by others, but it is something I wished I knew about before just so I could have mentioned it to my urologist. The only thing that really bothers me in the whole ordeal is the skill of the pathologist. We put so much into their readings. I have a friend who could help me get in at MD Anderson or at least get one of their pathologists to read the slides. I'm going to pray and see what I should do. Thanks again though.

"I am third."
-Gayle Sayers

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12 years 9 months ago #7088 by Rosie
Greg you said: I think like you do, Alice. I just know things will happen, the dice will roll, and I will just deal with whatever comes my way. The only thing we can do for each other is be here.

I say, things happen to our advantage when we are informed and act on the information with diligence while not compromising care because we may have to drive too far or take the time to pursue better care from urologists most experienced in our particular type bladder cancer. You asked in another post where your low grade recur after six months places you. If you have not had Mitomycin immediately after TURB as advised and indicated by many here discuss it with your doctor should another occurrence appear and yet another TURB. Alice, contact www.patientadvocate.org for assistance in finding the right doctor without insurance. Anyone with financial difficulties, insurance problems, income problems etc. and being treated for cancer can contact that site. My best to you both. Rosie

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12 years 10 months ago #7077 by Alice L.
Thank you Nancy and Greg for your input and concern.

I wish you both the very best that can possibly be in our situations.

Sincerely,

Alice

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12 years 10 months ago #7073 by Nix
Alice, No wonder you are second guessing yourself, Alice . you have certainly had a "full plate" and then the insurance problems on top of everything else. I know it sounds easy to say - just try to find the best doctor you can and if you have to travel 2 or 3 hrs - just do it. But some circumstances hold us back. I will tell you to keep looking until you find a doctor that you trust and of course one that will listen to you. I wasn't thrilled with my URO, until I flew to St Louis for a second opinion, from a doctor I respect. He was very supportive of the treatment my URO choose and that was very comforting. Maybe, you could find a local doctor, and then pick one for a second opinion, just to give you peace of mind. if you have to travel once for a second opinion just to double check your doctor - it would be well worth it.
I know the next several days will go slow for you, but you will be in my prayers and thoughts. Hopefully, everything will be fine and you can relax for a while.

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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