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CT urogram

2 years 1 month ago #52195 by dani
Thank you so much Jake for replying and for relaying your experience. It is very helpful. My doctor is performing an ileal conduit with an external bag so it seems I should not experience the incontinence and/or the need for catheterization. Although the thought of carrying around an external bag for the rest of my life is not very appealing, it seems a small price to pay to be around a while longer. At any rate, I really value your comments. Thank you again for sharing.

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2 years 1 month ago #52194 by Jake2013
Hi Dani,
I just joined this site because I was curious about what people had to share years after going through RC, and I saw your post. I know everybody's sutuation is different and experiences will vary depending on age, sex, health, etc. I was initially skeptical of my doctor's motivations when he diagnosed me with cancer, sensing they suggest surgery based on the prestige and revenue it produces for them. But I can tell you are a definitely more pragmatic than I was, and after having gone through my surgery almost four years ago I feel confident saying it was the best solution based on my situation.
I was presented with the option of radiation or surgery. After I decided surgery was the most comprehensive action it was suggested I do nine weeks of chemothearpy before having the surgery because the TURBT is not guaranteed to remove every cancer cell, and chemo would presumably knock-off any cells that may have escaped. I don't remember what letters or numbers my cancer cells were, so this may be why they didn't suggest chemo for you.
I had my surgery on a Firday and they would have sent me home Monday except there was a blizzard and I didn't have anybody to pick me up. I was able to walk from the gurney to the bed post surgery. Overall pain was not a very big issue. The worst pain I experienced immediately after surgery was gas bloating and if it werent' for an observant nurse that suggested gasx I would have been begging for narcotics. The most effective pain med however was some potent IV NSAID (don't remember the name)
The first couple months are more inconvenient than debiliating. After all the healing is completed, incontinence is the most frustrating thing. I needed to use a catheter for over a year because the ureter kept trying to heal shut. I highly recommend getting sent home with hard plastic catheters, all I had was a soft rubber reusable one and had to make an emergency appointment after trying, unsuccessfully, to urinate for a couple days.
Today I don't need to cath myself anymore, voiding is much easier and more natural, after learning to relax instead of force, and leaking is practically non-existent, day or night. I still have to get up in the middle of the night however. No more solid seven hours of sleeping. Sexually everything is good, I'd say 80% of pre-surgery.
I hope you make the most well-informed decision for your situation and thank you for sharing.
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2 years 1 month ago #52193 by dani
I had the TURBT on 10/10/16. Came home with a catheter and the placement of a stent in my left ureter as the tumor was causing my left kidney to drain poorly. Dr. said he got all of the tumor out which was good news. I hated having the catheter and removed it myself at 1 week post TURBT. I felt pretty good after removing the catheter. Then I went in for the postop visit on the 19th. The pathologist measured the left bladder wall tumor at 5.0 x 5.0 x 1.5 cm and the base of bladder tumor at 6.0 x 5.5 x 1.5 cm. The doctor says he feels the best treatment for me is to remove my bladder. He said with removal of the bladder, there is an 85% CURE rate, which sounds pretty good to me. He will do an ileal conduit with bilateral pelvic lymph node dissection. I am scheduled for surgery on 11/7/16. While this is not the outcome I was hoping for, if this can be cured, I can deal with it. I am concerned about the recovery period and what that will entail. It sounds like a huge operation and I have no idea what to expect. The only time I have ever had general anesthesia was for the TURBT. He said he thought there would be a 5 - 7 day stay in the hospital. And to think all this was going on in my bladder and I had absolutely NO SYMPTOMS. CRAZY!

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2 years 2 months ago #52069 by dani
Thank you for your response and offer to help. I am really anxious to get this thing going and take care of it whatever it may be. I am so happy to have found a doctor I feel comfortable with and certainly may seek another opinion when the results are returned. So sorry you are going through this, but glad to hear I have the support from a fellow Washingtonian. I will look forward to following your progress. Thanks again.

Dani

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2 years 2 months ago #52067 by Optimistic2
Dani,
Sorry to hear what you are going through. I thought I should communicate with you since I live in Manson Washington. Actually central Washington. I was diagnosed in May of this year with T1 HG bladder cancer. Single tumor of a little more than 2cm. I have been seeing a urologist in Bellevue, WA since then at Overlake Hospital whom I like well, but still after my initial TURB and path report came back I made an appointment at the UW urology dept. for a second opinion. I saw DR Daniel Lin who is the Vice Chairman of research and a urologist and oncologist there. He had my path slides reevaluated at Fred Hutchison and reported back reconfirming my first results. He gave me advice on how to move forward and confirmed my path forward. It was very reassuring and he seemed like a good and thorough doctor. Just in case I asked him how many RC's he personally had performed and he said hundreds. He said if I need major surgery down the road come to the UW. Since then I have had my 6 BCG treatments and will have a cystoscopy in November to see if I am all clear. All procedures so far have been at the Overlake Hospital clinic. Best of luck going forward and if you have any questions please ask.
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2 years 2 months ago #52066 by dani
So I ended up cancelling the TURBT on 9/20 because I just did not feel comfortable with the care and answers I was getting from the urologist my primary care physician referred me to. The fact that she did not even inquire if I needed to use the restroom immediately following the cystoscopy during which she instilled liquid into the bladder was a huge red flag to me when it happened, but I brushed it off thinking maybe she was super busy. This may not seem like a big deal to some, but I could not listen to a thing she said as I was concentrating so hard on holding my urine. I finally had to say, "I am sorry, but I really have to use the restroom" to which she seemed surprised and said, "Oh, get dressed, it is across the hall". Then because I did not hear any of her explanation about future treatment plans, etc., I called her office a few days later with numerous questions. The call was returned the same day by the doctor's assistant who asked what my questions were and seemed to be writing them down saying she would relay them to the doctor. The doctor did not call me back for 8 days when she called with the results of the CT urogram and mentioined she understood I had some questions. This was on Thursday and my TURBT was scheduled for the following Tuesday. After much thought and discussion with my children and friends, I just had that gut feeling that I would not be comfortable with this urologist for the long haul and I cancelled the appointment for the TURBT the following day. My friend, the radiologist, recommended another urologist here in Spokane with excellent credentials and my new friend Sara Anne from this forum took a look at his credentials as well and felt he would be a good one to see. I was scheduled for a consult on 9/30 and on my way to the office that day received a call saying the doctor had called in sick. You can just imagine my disappointment. It was almost overwhelming. They rescheduled me for the following Monday, 10/3. When I got to his office I was informed he was still in surgery and would be an hour or so late. Again, very disappointed. Well, I finally got in to see him that afternoon and it was so worth it. He apologized profusely both for being sick on Friday and for being late for my appointment that day. He took a great deal of time explaining things to me and wanted to do a cystoscopy to see for himself what we were dealing with. He took a great deal of time with me even though he had a waiting room full of patients waiting to see him. I loved him. I am scheduled for TURBT on Monday at 8:30. My point in relaying all this is to say that if you have doubts about the care you will receive from any doctor, look for another. I am 100% confident in this doctor's qualifications and the care I will receive from him as I make my way through this awful thing that has happened to me.

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