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Just diagnosed

3 years 5 months ago #51293 by Alan
Just a quick note of encouragement as I can feel the tension in your posts. All of us on this board have been and done this! I know it is a trite cliche: one day at a time is all you can control. The vast majority beat this and you will come through stronger and better!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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3 years 5 months ago #51292 by Lupenbill
Thank you again for all the advice. Everything I have read indicates that I should come through this. We are frightened and have trouble sleeping at night. I'm gonna continue to pray and try to find someway to relax until I have more knowledge. At this point I am so incredibly tense even my back muscles ache when I try to sleep I do believe this is due to tension. But I wonder has anybody else experienced that type of discomfort when going through this.
Lupenbill

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3 years 5 months ago #51291 by Jack R
Lupenbill,

It sounds like you are right on track with most after receiving the initial diagnosis. It can take a few weeks for the results from a full workup - 6 weeks in my case - checking the whole urinary system (kidneys, ureters, bladder, urethra) for issues. Time seems to stand still just when you want things to happen right now. Time is on your side when caught early.

Telling the kids can be tough (mine are older). I waited until a treatment plan had been devised, with expected time to achieve defined results. Then I wrote the kids letters telling them that things looked good, and I would let then know if that changed. I wanted to avoid big discussions.

A younger kid, living with you will soon notice your new schedule. Once you have a plan you can reassure him that you are (expected to be) (going to be fine), but you will have some ongoing treatment. Cancer is such a scary word that a "bladder problem" may be a better term.

My wife is involved in all aspects, from driving to grilling the doctors for full explanations. Everyone needs an advocate for medical issues.

You might ask your doctor now, who he would recommend as a Urological Oncologist should you need one. You will have a better understanding of your situation shortly, and will have had time to decide if, once worked-up, you want to see a general urologist or a specialist in bladder cancer.

Best, Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
Until next scope :) :)
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3 years 5 months ago #51290 by sara.anne
You want someone who treats a LOT of bladder cancer. Most urologists deal primarily with prostate cancer, and are not experts in bladder cancer. You are very close to Chicago...The University of Chicago
http://www.uchospitals.edu/specialties/cancer/urologic/bladder/team.html
is among the very best. Our president, Cynthia, was treated there by Dr. Gary Steinberg....she had some real issues so she went all the way from Western Mass to Chicago for treatment.

Northwestern also has some very good doctors.

A pleasant personality and a good bedside manner are nice, but what is really important is EXPERTISE IN THE TREATMENT OF BLADDER CANCER. You should ask your urologist about how many bladder cancer patients he treats a year.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 5 months ago #51289 by LillianG
You're off to a good start! It's very important to make sure that you have the right doctor. The main thing to ensure is that the urologist deals with a lot of bladder cancer patients as opposed to prostate issues.

I know nothing about any doctors or treatment centers in your area, but you can click the Help -> Researched Resources -> Treatment Center Finder links at the top of this page to find National Cancer Institute (NCI) treatment centers/hospitals near you for bladder cancer.

Take care,
LilyG

5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.
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3 years 5 months ago #51288 by Lupenbill
Right now we are trying to decide if we have the right doctor for this. I have looked at his ratings and he seems to be average. Has anybody had any dealings with Dr. fakhouri in DuPage medical group in Naperville Illinois his bedside manner seems fine. I just want to make sure that I get the best care possible if this is something that I am going to have to fight I want to make sure I do it right and have the best chance any information would help
Thanks Lupenbill

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