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How Soon After Diagnosis Does Treatment Begin?

1 year 6 months ago #53384 by sara.anne
Don't ever be shy about asking questions!! We have all been where you are now, and this is why we have this
Forum!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 6 months ago #53383 by Momoy
Thank you Sarah Anne, this information is really helpful and thank you for not making me feel bad for asking questions. It eases my mind more than you know.

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1 year 6 months ago #53382 by sara.anne
Welcome to the Forum and, of course, the answer to your questions is "time shall tell!"
But, to try to answer in a bit more detail, there are multiple reasons that there could be urinary blood
that are not bladder cancer. Your urologist will know much better after the tests that are coming up.
IF the CT scan and the cystoscopy indicate the possibility of bladder cancer, the urologist will no doubt
schedule you for a TURB (transurethral resection of the bladder) which is like cystoscopy except that it is done under general anesthesia so that he can remove any tumor which is present. The tissue will then be sent to a pathologist who will make the final determination as to whether it is malignant or not, whether it is high grade (fast growing) or
low grade (slow growing) and its extent. This will determine your treatment plan.

Until these things are done, you will not know IF it is bladder cancer or what the treatment might be. But as you worry about all of this, and we all do, remember that a. it might not be bladder cancer and b. if it IS bladder cancer, this is often highly treatable. I was diagnosed over 9 years ago and am doing fine!

If it is bladder cancer, you will want to be treated by a urologist who sees many bladder cancer cases; many see primarily prostate cases and while they may be experts in that area, they may not be up on the latest treatments for bladder cancer. Cancer Treatment Centers of America is a national for-profit chain (with great ads on TV) and is not known for special expertise in bladder cancer. Once you have a definitive diagnosis, if you are not comfortable with your current situation, I am sure that many of our members will have suggestions for you.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Momoy

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1 year 6 months ago #53381 by Momoy
This past year has been so confusing and scary for me. First of all, I'm 44 years old, I manage a successful Real Estate office within the town I live in, I am healthy, vivacious and as a hobby, during my spare time I cover red carpet events in Hollywood. Most importantly have 3 beautiful children ages 20, 17 and 13 and my kids are my life and I am very blessed to have a beautiful relationship with each of them.
My health journey...well, last summer I started getting what I thought were chronic UTI's. I went in for anti-biotic treatments time after time, after I couldn't flush them away on my own with cranberry juice and water. This happened about 4 different times over the past year. Finally my Dr. told me that at the very first sign of discomfort I should call her to get my urine dipped ASAP. The last time I finished my 10 day round of Cipro, the very next day the burning came back with a vengeance. I called my Dr and she had me come in. This time she dipped my urine and it came back negative for infection, but displayed "gross hematuria". She came to the conclusion that I must have kidney stones, so she sent me off for a CT Scan and sent my urine out for lab testing and did blood work to check on my kidney function etc. Urine came back free of infection, but confirmed the gross hematuria. Blood work showed kidneys were fine and CT Scan was negative for stones. My pain continued, so Dr. screened me for every STD under the sun (just in case), those too came up negative. She then did a Pap Smear to make sure everything was okay there (Pap came back totally normal). At this point I was referred off to the Urology Specialist.
The Urologist re-ran my Urine and Blood tests and stated that I still have gross hematuria with no infection. Next week I am going in for CT w/color contrast and Cystoscopy 2 days later.

I'm still pulling for, "You are totally fine...this is just a total fluke/mystery", but if for some reason it IS positive for cancer, can someone tell me the following:

1.) What questions should I ask (because I am sure shell-shock will win if I don't plan ahead)
2.) How soon after diagnoses do treatments begin?
3.) Do you recommend Cancer Treatment Centers of America over a regular hospital
4.) Can you work during Cancer treatment?
5.) What other conditions mirror the same symptoms that are NOT Cancer? Interstitial Cystitis? Endometriosis? Ovarian Cysts?

I will have my results before Memorial Day, so I'll come back and update...
Just hoping for some emotional support right now.
The few people I've reached out to treat me like I am a crazy person for even worrying.
I kinda hope that I am crazy and not a cancer patient.

Tick-Tick-Tick...
Time shall tell.

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