Here we go again?

11 years 2 months ago #44026 by sara.anne
Replied by sara.anne on topic Here we go again?
Well, Mike. I really don't quite know what to say. Maybe just say
THE USUAL . But you are not just "the usual," you are
very special.

Of course we won't know until the last tests are done. But you are, as
always, on top of everything and preparing for whatever.
You know that my thoughts are with you and Liz.

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: mmc

Please Log in or Create an account to join the conversation.

11 years 2 months ago #44024 by CatherineH
Replied by CatherineH on topic Here we go again?
Wow Mike... that's a lot to take in. No wonder you have been "distracted" for the last few weeks. I was concerned when you mentioned that you have been away from the forums more than usual due to some "sickness". That e.coli is some mean stuff. My neighbor got an e.coli infection from a kidney stone and was in ICU for 6 days.

I know this is a tense time for you, Liz, and family. We will all be hoping the abnormal symptoms are remnants of your infection... and worrying right along with you. Hope you feel better this week and I know you will be glad to get home.

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: mmc

Please Log in or Create an account to join the conversation.

11 years 2 months ago - 11 years 2 months ago #44023 by mmc
Here we go again? was created by mmc
So far I have been cancer free for 4 years and three months. It is beginning to look as though that may not be the case but it is not confirmed. A couple months ago I started having intermittent gross hematuria (visible blood in urine) ranging from a tinge of red in my urine up to a robust Cabernet. Also was having intermittent flank/right kidney pain.

First thought was infection, because I do have a neobladder. The culture came back positive for E. coli so I took a course of antibiotics that really knocked me out. Spent two days sick in the hotel in Hartford before I was well enough to fly back to Colorado Thursday week before last.

Went for CT IVP. Results inconclusive. Lymph node issues but they could just as well be from the infection.

Here are the results:

1/26/13 Ct Ivp
Narrative
EXAMINATION: CT OF THE ABDOMEN AND PELVIS WITHOUT AND WITH CONTRAST

DATE: Jan 25, 2013 05:06:35 PM.

INDICATION: ?upper tract recurrence..

TECHNIQUE: Contiguous axial images of the abdomen and pelvis is performed prior to and following the uneventful administration of IV contrast, Isovue 370, 120 mL, per CT IVP protocol. Postcontrast images are acquired with split contrast dose to combine nephrographic and excretory phase with single acquisition. Images were reconstructed for coronal and sagittal MIP images.

COMPARISON: 1/26/2010

FINDINGS:

Noncontrast images: There is no radiopaque stone in the bilateral kidneys and following the course of the bilateral urinary collecting systems, ureters, and urinary bladder. There is mild nonspecific bilateral perinephric stranding.

Combined nephrographic and excretory phase images:

Right Kidney: The right kidney appears normal in size, parenchyma thickness, and enhancement pattern. There is no significant focal lesion in the right kidney. No hydronephrosis.

Left Kidney: The left kidney appears normal in size, parenchyma thickness, and enhancement pattern. Nonspecific subcentimeter exophytic hypoattenuating lesion along the anterior cortical margin of the interpolar aspect of the left kidney. Otherwise, there is no significant focal lesion in the left kidney. No hydronephrosis.

Collecting systems and Ureters: Bilateral single ureters. The distal aspects of the bilateral ureters are not fully opacified. There is no significant filling defect or soft tissue mass along the bilateral collecting systems and ureters. The ureters are not deviated from their expected courses.

Urinary bladder: The urinary bladder demonstrates contour irregularity and trabeculation without evidence of focal mass.

Liver: The liver is enlarged, measuring approximately 23 cm in craniocaudal dimension. No focal lesion.

Bile ducts: No evidence of intrahepatic or extrahepatic biliary ductal dilatation.

Gallbladder: Contracted appearance. Cholelithiasis.

Pancreas: Unremarkable.

Spleen: Unremarkable.

Adrenals: Unremarkable.

Reproductive organs: Prior prostatectomy.

GI tract/Mesentery: No evidence of obstruction. No ascites. No pneumoperitoneum.

Retroperitoneum: Multiple prominent/enlarged retrocaval, aortocaval and iliac chain lymph nodes. The most prominent retrocaval lymph node measures 15 x 11 mm. The most prominent iliac chain node is within the right common distribution and measures 17 x 14 mm. Mild/moderate ASVD.

Soft Tissues: No acute focal abnormality.

Bones: No suspicious abnormality.

Lung Bases: Clear.


Impression
IMPRESSION:

1. No evidence of nephroureterolithiasis. No hydronephrosis. No obvious ureteral pathology.

2. The urinary bladder demonstrates contour irregularity and trabeculation without evidence of obvious focal mass.

3. Hepatomegaly.

4. Multiple prominent/enlarged retrocaval, aortocaval and iliac chain lymph nodes. The most prominent retrocaval lymph node measures 15 x 11 mm. The most prominent iliac chain node is within the right common distribution and measures 17 x 14 mm.

Then I got FISH test (fluorescence in situ hybridisation. It is a test which looks at the genetic material of cells)and the results of that came back earlier today. Abnormal cells but it sounds inconclusive. FISH is a highly good negative indicator. In other words a negative result on FISH means very likely 95%+ probability that it is negative. NMP22 is only around 67%. But, as far as I know it is inconclusive as well.

Monday of next week I go in outpatient for a cystoscopic inspection of my urethra and ureters and maybe kidneys. Lucky they did the VIP neobladder because likely they will be able to get to my ureters. VIP stands for an Italian name of the type of neobladder (Vescica Ileale Padovana) and does not mean the "Very Important Person" model. :)

I told my doc he can cut me all he needs to explore everything. My approach is that if it has come back, I want to know as soon as possible and treat it as aggressively as possible.

Told people at work today after talking to the doc. Told our client as well and they are very supportive of me doing whatever I need. Told me to go home this week if I need but I'd prefer to work although I do admit this has gotten me distracted. I called Liz and my two grown children and gave them the status update. I did not tell the kids when I went for the scan but this procedure next Monday was big enough in my mind that I called them both individually.

Liz is ok as she knows we still don't know anything for sure but we both expect this is a recurrence. If she would not have been ok I would have flown home tonight. I told her if she changes her mind and isn't alright I will fly home early. Otherwise, I will fly home Thursday night as usual.

I have my orders for a urine culture to make sure we have taken care of the E. coli so all I need to do is stop off at a local lab with my order and they will send it to my doc.

Just thought I'd update everyone. Usually, I am better about compartmentalizing but I must admit that I'm quite distracted by this.

As I know more, I will update.

One cool thing is that my hospital uses the EPIC system and that has an iPad app for test results, emailing my doc, appointments, etc. pretty cool stuff!

Best to all,
Mike

Ps. Sorry if my posts over the last month have been off the mark or insensitive in any way (more than usual). This has just really gotten me distracted since the blood started.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne