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Here we go again?
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.44 Replies-
Mike, Just seen your news! Wow, Mike I am blown away! I am so sorry you and your family have to go through this again. I have been off the site for a while and was just checking in. How easy it is for us to start taking our good health for granted. I been very guilty of that lately. Sit here in the rain in Oregon today whining about it. Won’t be doing that again for a while! I agree 100% on you being aggressive. That’s why I am still here after 3 times. Like everyone here I will be pulling for you.
Wishing you and your family the very best.
Duke -
Mike,
Only just read your posts, and knocked for six to begin with. But with your positive attitude and all the good vibes from all your friends and family, you are gonna kick ass in this round.
Diane -
Ditto what George said, he says it so much better than I can.
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
You are the lead singer in this group……. We’re the Pips backing you up
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Thanks again everyone!
George,
I’m definitely following your (and my own) advice. My doc is a top doc and UCH is a bc center. I’m asking questions via phone calls and email and when I saw him for the procedure.
Liz and my kids are in the loop and fully informed. I was SUPPOSED to be off this week skiing with my son. He’s up there skiing because he already took the time off and we already paid for the condo.
My CEO and other folks in my company are also up to date in addition to all of the wonderful folks here and I am blessed to have such a great contingent of folks pulling for me.
We are trying to resist doing too many “what ifs” as we just need to know exactly what we are dealing with and then we will follow my usual advice and take a very aggressive approach to treatment.
It may go without saying but thanks for saying it. We all cry when we lose someone and cheer each all clear because we do love the folks that participate here. We come to know and trust each other and we are a community of people with something in common.
Thanks again to everyone!
I believe that the true test of our principles is when we are faced with situations that test them. Do we live by them? I feel that I am.
Mike
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Yeah.. what George said!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
My last post looked like I had some font size trouble, and I did!
But the more I looked at it…. The more I realized it was EXACTLY the way I felt. Mad, Confused, Sad and, without words to express how much all of you here mean to me. We have never met face to face, but I could feel the same emotions flowing up when I read about Mike’s reaccurance.
We Cheer for good news! But we also feel the pain of everyone’s diagnosis!
This is especially hard, as Mike is our inspiration to stay here and help. He can be very clinical and then give is a kick in the ass if we dont’ give this disease the full frontal assault.We all wish you the Best, Mike. And we are sure you will overcome this. But, we want you to follow your own protocol.
Ask a Lot of Questions.
Get to a Major cancer center
Get a second opinion
Don’t take no for an answer
Follow the Dr. orders
Keep you family and caregivers in the loop
BEAT THIS THING!And, if you need…… I’ll fly to Colorado to make sure you are following MY orders.(Usually we have to follow yours)
Mike, I know this goes without saying….. We Love you and we are here for you… We really are!
Keep up that positive outlook, and you can be sure, We won’t let you fail.George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
I’m glad things are moving along quickly for you. The waiting and wondering can take an awful toll on anybody. I’ve had bladder cancer (obviously) and my dad (age 68) had a partial nephrectomy last June. The final diagnosis was stage 2 kidney cancer. He just had a clear round of testing and is doing fine. Surgery is never easy, but this is one procedure that has really advanced in recent years. Laproscopic and robotic surgery has lessened the recovery time a lot for this type of surgery. Keep us posted and we’ll keep you in our prayers.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.
Wow, Mike, I am so sorry to read about this latest report. Well, the PET will be done and the docs should be able to read it asap since NO WEEKEND wait! Know that I have you in my thoughts for only good things. Like George, I think we can make this happen if we all think the best!
Thanks George! Means a lot!
Mike
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Where the Heck Have I Been? I leave you alone for one week …… And THIS is how you pay me back?
Seriously Mike. I am so Mad right now! I know everyone is sorry but I am[size=6]Mad as HELL and I’m Not going to take it ANYMORE !!!!![size=3]
I know you will beat this again. I wish I could help in any way. Good luck tomorrow and I am sur you will keep us all in the loop. But, please take care of yourself for us. So please put us all in your virtual waiting room and we will all go through this for you. I wish I could trade places with you. That is how POed I am at [size=1]cancer[size=3] right now.
We are all in this together Mike. Lets all use the Vulkin Mind meld and think of strong thoughts for you.
Sincerely and Lovingly
George[/size][/size][/size][/size]
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Yes, it does seem like YEARS, waiting, getting tests, waiting for results….
BTW, my dad lived for many many years with one kidney (kidney cancer).
STILL thinking good thoughts….
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
PET scan tomorrow at 11:15 mountain time. This is great news. Thought it was going to take a week or more to get scheduled but the scheduler got me in tomorrow and got my preauthorization done and called me back to confirm. Great people that I am working with! Hoping to know the full extent of what we are dealing with so we can start treating this.
Told my doc that things are taking a long time in “cancer patient” years! They are WAY longer than dog years. One day feels like a month! Only so long I can be on the sideline doing jumping jacks. Time to get in the game!!!
Mike
I’m drawing flow charts in my head about what to do. If lymph nodes then x; else y. Right kidney = null (remove)…
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hey Mike… So sorry to hear this but YOU and your doctor have the right idea to be aggressive with treatment.
Now I’ve got that Jeopardy song stuck in my head! B)
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Mike,
Heres a buddy to help with the waitng.
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)Sign In to reply.
