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Newbie and stressed

12 years 7 months ago #4760 by Rosemary
BTW,

Large tumors are not necessarily bad tumors.
My Doctor took pictures of my tumors which he gave to my family while I was sleeping.  They are very ugly.
I can tell you now, that some of these questions you pose here,  the Doctor will not be able to answer until he has the Stage and Grade.

But they are all good questions.

I hope you get a good night's sleep.

Rosemary


Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 7 months ago #4759 by Rosemary
Man O Man.

Let's put it this way....if the tumor deserves it, does he PLAN to give you Mitomycin C? And what does the question have to do with HMO's ?? That makes no sense. IF YOU NEED IT, DOES HE PLAN TO GIVE IT TO YOU... you would like to know, thank you very much... and if it isn't preapproved how is he going to give it to you if you need it?

I'm getting stressed out myself.

Good luck tomorrow, Buddy.

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 7 months ago #4758 by Ricky
Thanks for the well wishes.

After reading a ton of stuff the last couple of days, I did just that. I called my doc's office and wanted to know if they planned to shoot some chemo in there after the resection. I didn't get to speak to my doc but a nurse came on and suggested that I slow down and quit reading too much into this at this time. She told me that we don't even know if it's cancer yet so how can we get your HMO to ok very expensive chemo already? I told her I was informed by another nurse during my preop a couple of days ago that over 90% of tumors found in the bladder are cancerous which is why I called to request the chemo. I also asked how long it takes for pathology to come back and she said 2 weeks!! Sheesh louise! Will plan on asking my doc tomorrow if this is true.
I also have a small list of questions I plan to hit him with before they knock me out.

1) Why did my urine cytology come up negative if I have a cancerous tumor?
2) Was the hematuria from this tumor and not from a case of prostatitis?
3) How large is the tumor? Will there be a problem extracting it out of my urethra?
4) Was this the only tumor you saw? Could there be a CIS hiding in there too?
5) Can I see the tumor myself postop?
6) You told me tumor was superficial. How can you know this by visual cytoscopy alone?
7) If tumor comes back cancerous, should I schedule with an oncologist to run tests on my other organs too?
8) My hematuria started way back in December of 2006. Can the 4 month delay in this procedure have caused the tumor to grow to a higher stage level?
9) My right eyelid has be uncontrollably spasming for the last 2 months. Could this be related somehow?



Yeah, have been on pins and needles today, I think the stress has been so bad that I've actually been feeling faint and light headed all day.

Trying to keep focused on my work and stop thinking about the future. Think I'll take a good long jog tonight to tire me out.

Got to get up bright and early tomorrow.

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12 years 7 months ago #4755 by Rosemary
Dear Ricky,

Hey.

It sounds like you've had a thousand little shocks coming on you in fits and starts.

You will, no doubt, feel much better when this TURB is behind you. A lot will be coming at you from here on in.

Normally I would suggest that you find out from the Doctor if he plans to treat you with Mitomycin C, after the TURB. If you do get to see him before surgery, see what he thinks about that. (If you can remember to ask that is). This is happening really fast for you and anything we recommend right now, may be lost in the confusion and shock of what is coming at you.

Normally in the States, a biopsy report comes back in about 2-3 days. If you don't remember anything else, please make sure that you get a copy of your biopsy results. It is your record, and you have a right to have it.

The ball is rolling now. Lot's of us have been where you are.

Please come back and let us know how it goes. If you have any more questions that we might be able to help with, please don't hesitate to ask.

The TURB itself is not too bad....


Best wishes,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 7 months ago #4753 by Zachary
Ricky,

There are a lot of great people here who have been in your shoes and are rooting for you.

Right now you probably feel like you were hit by a ton of bricks, and that's understandable. When I was diagnosed I felt the same. As I drove home, tears were rolling down my face.

But...and this is a big but.... you're going to be okay. You're in for some major life changes, but if you can roll with the punches, you'll be fine. My bladder surgery was eight months ago, and with a few exceptions, I'm back to normal and feeling terrific. I was T3aN+N0.

This is the best site anywhere for someone with bladder cancer.

Best wishes,

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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12 years 7 months ago #4751 by Ricky
Hi everyone.  My name is Rick, I'm a 43yr old caucasion male who lives in Fresno, CA.  I just found this site and would like to relate to you all my circumstances.

Back in Dec. of 2006 I noticed some blood in the toilet after having a bowel movement.  I seemed to occur pretty regularly and I at first thought it must be all the Motrin I was taking as I had just had a shoulder surgery.   After a week or so of this I go to my doc, who ends up referring me to a gastrointestinologist for further exam.  I see him, he runs a couple of tests and asks if I have family history of colon cancer and I tell him I don't know as I was adopted at birth.  He seems to think it's just probably a hemmoroid but schedules me for a colonoscopy just to be safe.
So bleeding is still continuing, but it wasn't until the beginning of January that I realized I had diagnosed myself incorrectly.  I was standing at a urinal at a hotel and visually saw the blood come out of my penis right after the urine was expelled, terminal hematuria I believe it's called.   I was quite shaken from this needless to say and back to my doctor who prescribes some antibiotics for a possible prostate infection and also refers me to a urologist.  So this is about the 12th of January ok?  

Fresno has this great big Urology center with 9 different urologists and their own surgery center,  I know,  I was there 3 years ago for a vasectomy.  I get an appointment for the 18th of January but it is only to be seen by a physician's assistant as I would have to wait much longer to see a doc.  

I see the PA, she checks me out, feels my prostrate, no it doesn't hurt,  takes a urine sample for cytology testing, and prescribes a different antibiotic than my doc had prescribed and said my doctor's prescription was not good enough, only 3 days worth,  I need to be on antibiotics for at least 2 weeks.  So I get my meds and the blood episodes are slowly disappearing until finally after 2 weeks of meds, it has stopped completely.  I called them and found out that urine came up negative for cancers. But since I had hematuria, they have to schedule the IVP and the Cytoscopy test to make sure.  Well I can't get scheduled until the very last day of February, typical with this place they're so dammed busy.

A couple of days before these tests I'm told my doc will not be in that day and that only the IVP can be done and need to reschedule cytoscopy for later date.   So I went in just for the IVP and was in and out in an hour.

So we reschedule cytoscopy for March 22nd and guess what?  A couple of days before this date, I am again called and told I need to reschedule this test as doctor would not be in that day.  Rescheduled for 27th of March now.

In the meantime I get a voice mail out of the blue from Advanced Medical Imaging calling for me to confirm an appointment for such and such date and I am perplexed as I was there a few months prior for a shoulder MRI so thought they just made a mistake.  I called back and left message that I didn't have no appointment with them and left it at that.

So the 27th of March comes,  Doctor is in the house!!! yippeee!!  The scheduler asked if I had gone to my Ultrasound appoint at Advance Medical Imaging and I looked at her finally adding 2 plus 2 and told her no I didn't.  Their darned overworked office never called me to let me know I needed to get this Ultrasound done as the IVP xray was inconclusive on a spot and thus the ultrasound.  
So doctor starts cytoscopy (yikes@ it hurt), he immediately saw a mass and told me so and that we need to schedule surgery to take it out.  His only description to me was that it was superficial.   I was of course in a bit of shock and kind of wandered out of there in a daze.

So last night, Apr 4th,  I go to get ultrasound done.   The tech lets me watch the screen as she's doing it and I told her I had a surgery coming up soone for a bladder tumor,  when she got to my bladder we could see clearly the tumor.  It looked huge but she seemed to think it was less than an inch long.   I guess the bladder is smaller than I thought as the tumor looked like it took up a decent sized portion of the bladder.

So here I am today, a sleepless night has just passed as I have been scouring the internet for any and all info on Bladder Cancer.
I go in tomorrow for the resection and not much else I can do now except wait.  

I have about 8 cigarette pack years on me,  been smoking 1/3 of pack a day since I was 17, and I guess it's finally caught up to me.
I have quit since the cytoscopy and never plan to start again,  (Lord help me!!)

Thank you for listening and I will try to keep you updated as well as join in with support for you.  

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