New to Forum/Undiagnosed: Expecting the Worst

[Alan]

Congrats on the good progress! The only thing I might ask for if it was me is the cytology test, especially being non invasive and not super expensive….understanding it often shows false positives. Probably not a major issue.

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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.

[beto]

Hi. Just wanted to give an update.  My uro did a cystoscopy for me in November – and he did not see any abnormality in my bladder; no polyps/tumors, etc.  My first cystoscopy was April last year with same results.  He scheduled another follow-up cysto in 6 months.

He did not see a need for cytology or tumor marker tests at the time.  Should he be doing something additional at this point?  Many thanks.  Blessings.

[joea73]

Hi Beto,  glad to know that you were able to sorted out  the CT urogram insurance issue.

Moffitt cancer center website says ” A mass (tumor) that is found on the bladder – the muscular sac in the pelvic region that stores urine – can sometimes be indicative of bladder cancer. In other cases, a bladder mass could be a benign (noncancerous) polyp, which is a small, cauliflower-like growth that can potentially turn into bladder cancer in the future.”   

https://moffitt.org/cancers/bladder-cancer/faqs/what-does-a-mass-on-the-bladder-mean/
 
It takes several years for a normal cell to become a cancer cell.  It requires 3-20 accumulated mutations in protein-coding genes. It may take several years for one mutation to occur, and it make take another several years for another mutation to occur.  A cancer can grow max 2mm on its own.  New dedicated blood vessels need to be developed to provide oxygen and nutrition in blood to help the cancer cells continuing dividing (growing).  So, it takes several years from a normal cell to become a cancer cell, and the cancer cell to divide to become the size which can be detected either by CT or cystoscopy.   I think the tumor (benign or malignant) was there 4 months ago, but it was small enough that the urologist could not detect by cystoscopy.  

According to a 1989 study by a French group, different cancer type showed different growth rate .
 
Doubling time
           Embryonal tumors                             27 days
           Malignant lymphomas                      29 days
           Mesenchymal sarcomas                  41 day
           Squamous cell carcinomas              58 days
           Adenocarcinomas                            83 days

In terms of bladder cancer, a Israel group checked how fast a recurrent low grade tumor grow.

The result is as follows.

If the initial tumor size was less than 4 mm  (32 patients),  in average the recurred tumor grew about 5mm³ each month.
If the initial tumor size was greater than 5 mm (6 patients), in average, the recurred tumor grew about  1000mm³ each month.

It seems to indicate that the growth speed of bladder cancer differ among patients even if the tumors are same low grade.

https://www.europeanurology.com/article/S0302-2838(05)00850-X/fulltext

best

[beto]

Thanks for all the input.  I am very grateful for the work that you all do.  

I got my CT urogram results.  In addition to slight bladder wall thickening in the trigone,  the urogram found a 4×5 mm bladder polyp.  All other findings were fine.  

I need to do another cysto and most likely a TURBT.  

I am puzzled that my cysto in April was all clear and then a polyp pops up on urogram 4 months later. Do they grow that fast?  Is there a chance a polyp is benign?

I have resigned myself to having bladder cancer. But I am still hoping for the best. 

Many thanks again.  God bless you all.

[jack-r]

Beto

“A computerized tomography (CT) urogram is an imaging exam used to evaluate your urinary tract, including your kidneys, your bladder and the tubes (ureters) that carry urine from your kidneys to your bladder.”.

My clinic requests authorization for a “CT of the abdomen/pelvis, with & without contrast”.  This is just a more complete way of describing a CT Urogram. Everything from the kidneys down is suspect and must be checked out.

Once I was diagnosed with bladder cancer, the procedure was extended to a “CT of the chest/abdomen/pelvis, w/wo contrast” to monitor for spread.

Your doc’s office should be able to straighten this insurance company misunderstanding quickly. 

Best,
Jack

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6/2015 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 :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

[joea73]

Hi Beto,

I have no knowledge for CPT procedure code for CT scan.   But, Radiology Associates of Hartford, Connecticut has published the 2019  CTP codes for CT and MRT.  The document says the CTP code for Urogram with or without contrast is 74178.

https://rahxray.com/wp-content/uploads/2019/04/RAH-CPTMRI-Code-Sheet_2019.pdf

The CTP code for urogram with or without contract is also 74178.   The document is effective 2020.   

https://www.imaginghealthcare.com/wp-content/uploads/2020/05/ProviderPortal_V02.20-WebUploadVersion.pdf

I hope above links help.   Please note that I have no knowledge of how the insurance works in the US.

best

[beto]

Hi.  Sorry to bother you.  But I have been having insurance issues regarding the proper CPT procedure code for a CT-urogram.  My doctor’s office, imaging facility, and insurance provider seem to confuse it with the CPT procedure code for a CT of the abdomen/pelvis.  Without the proper CPT procedure code, I am unable to get insurance authorization for the procedure.  So, I would greatly appreciate it if you could share the CPT procedure code for a CT-urogram.  Many thanks.  

[beto]

Congrats, Sara Anne!  Thank you for your kind words.

I am also trying to maintain hope since uro cystoscopy did NOT find any bladder lesion or tumor.  My urologist saw the ultrasound report before he did the cystoscopy.

He wants me to do CT urogram so we can figure out what is causing hematuria, if any.  Thanks again.

[sara.anne]

It makes one wonder why they do a microscopic blood test if they aren’t going to at least discuss it!  It is true that in most cases a cause is never found (and some pc’s do not even order a urinalysis as part of a routine exam for this reason.)  BUT it can be a sign of bladder cancer, for example.

The CT-urogram should show any abnormalities and then your urologist can follow up.  It sounds as if you are getting good care now anyway!  And while I understand your concern (been there, done that) you should know that bladder cancer, found early, is very treatable.  Just a coincidence….I just returned from having a CT-urogram which my urologist requires every five years.  I am now 13 years cancer-free!!!

Advice…try not to worry too much until you know what it is that you need to worry about.  Your urologist will guide you.

Sara Anne

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