Adenocarcinoma - scheduled for partial cystectomy

6 years 8 months ago #46804 by lorrainevalentine
Replied by lorrainevalentine on topic Adenocarcinoma - scheduled for partial cystectomy
Just wanted to check in. It's been 10 days since my surgery. Physically I am doing better every day. Mentally this has truly been a challenge. I absolutely hate this catheter. I got staples for stitches so I can't shower just sponge bath. I'm bruised on my arm from the A-line and my neck hurts from whatever other needle/thingy they stuck for surgery. I don't recall the name of that. It was supposed to be if I needed a transfusion??? I did get chemo injected in the bladder and it sat there for a couple of hours. It was that mitomycin stuff. I haven't left the house. I have a follow up this Tuesday with my PCP and my follow up with my urologist on Wednesday. I don't know if the staples come out but was told catheter stays in longer. Hopefully I will find out Wednesday when exactly it comes out. I desperately want to not be tied to this thing. The urges to pee is not a good feeling. Sometimes even hurts. My nerves about making sure it all stays clean and I don't get an infection is driving me crazy. I am trying not to let this small set back get the best of me. It's super hard.

Now I'm afraid of how it's going to feel to get the staples removed. And if I will have any problems peeing once the catheter eventually comes out.

Just when I get my mind right I fall back into a scared-unsure-frustrated state of mind. I go back and forth with angry, grateful, pity, blessed....

Needless to say, my first full week home has been difficult. Mostly due to my mind and spirit. Hopefully, week two will get better and I can report positivity next time.

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6 years 8 months ago #46812 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy
Hello Lorraine... I have been thinking about you and hoping things were going as smoothly possible for you. Yikes... you have some challenges that I didn't have to deal with. I did not have staples but dissolving stitches so I never had to have anything removed, and showering was never a problem once I got home. And, I didn't have anything inserted into my neck. I only had a little bulb thing with a small tube in my abdomen that acted as a drain but it was removed the morning I left the hospital. In light of all that, you are doing great although I'm sure you don't feel like it much of the time right now.

When I went back for the first check with the surgeon after my procedure, I still had the catheter and they did a test called a static cystogram to make sure the bladder had healed so there would be no leakage of urine. For that, they put about 100cc of a contrast agent (Isovue 300) into my bladder, then took different views to ensure nothing showed up outside the bladder. It was pretty much painless since they could inject and drain the liquid via the Foley catheter connector. Once that checked out good, the nurse removed the catheter when I got back to the doctor's office from radiology.

I hope your appointments go well this week with your PCP and uro. I'm sorry you're having these difficulties... it is not an easy thing to go through and I think the mental recovery is much harder than the physical. Our minds want to pull us over to the dark side sometimes and it can be a hard thing to resist.

Where did you have your surgery? Hopefully you don't have a long drive on top of everything else. Please continue to update us on your progress and I will keep sending positive thoughts your way.

Best wishes... Catherine
Forum Moderator Team

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: lorrainevalentine

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6 years 8 months ago #46886 by lorrainevalentine
Replied by lorrainevalentine on topic Adenocarcinoma - scheduled for partial cystectomy
Just checking in. It's 3am (Arizona time) and as you can see, not sleeping well these days. I have to say last Wednesday's uro appt went ok. They removed the 30 staples. Honestly it didn't hurt. A slight pinch on a few of them and the rest I barely felt. I did take a pain pill prior to the appt just in case because I was so scared it would hurt. At least it calmed me down. So I can shower since then! Which is great. He said my scar healed nicely. This Friday I have appt for that x-Ray thing you mentioned Catherine, but unfortunately it won't be until the following Tuesday until this catheter is removed. Of course if the x-Ray shows all is well and that the bladder isn't leaking. So hopefully just one more week of this.

My uro is only about 10-15 min away from my house so the drive is not bad. Everything I was complaining about last week is better this week.

Family & friends have been super supportive so I'm so blessed with that. All of this has happened so quickly since I was first diagnosed in May. it really helps to have this website to go to for added support from people who are or have experienced the same or similar things with BC.

I will check in again next week.

God bless,
Lorraine

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6 years 8 months ago #46946 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy
Hello Lorraine... I hope this finds you improving each day and feeling much better all around. You hopefully have been freed from the catheter by now and are able to get around easily and easing back into some of your everyday routine.

So happy the staple removal wasn't as bad as you thought it might be. Often the dread and anticipation are worse than the actual event.

I look forward to hearing from you again this week.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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6 years 6 months ago #47379 by nono
Catherine,
at 53 I was diagnosed with muscle invasive bc in June 2014, I had a partial removal on Sept 26th. My Dr. removed most of the dome, my margins were clean and 18 lymph nods removed. Healing is going well but I'm having issues holding my urine. Currently taking 10 mg Veslcsre once a day. I go every 2 hours, if I cant get to the restroom I have an accident. The Dr said it takes time. I know I have to get used to a new normal. Did you experience any issues.

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6 years 6 months ago #47383 by CatherineH
Replied by CatherineH on topic Adenocarcinoma - scheduled for partial cystectomy
Hello nono... welcome to the forum. I'm sorry you are having issues resulting from your surgery. It sounds like your bladder was reduced quite a bit in size. Hopefully your bladder will be able to stretch a little bit over time but you may always have this challenge to some degree. Urgency every two hours must be very disruptive to your day, and especially to your sleep. Was your tumor an adenocarcinoma also?

I was very fortunate in that my tumor was discovered fairly early and was only 1.6 cm (about 2/3 inch). That allowed my surgeon to remove a smaller portion of the bladder wall around the tumor site in the middle of the dome between the ureters. I had a pretty quick physical recovery from the surgery. I really can't tell much difference now than before the surgery.

If I had to cite an issue, I did find that it was harder to hold urine back for a few months. I think that was largely due to wearing the catheter for nearly a month post-op and losing muscle tone. I was told to do Kegel exercises and I think that probably helped. At any rate, now almost 5 years later I am pretty much back to normal.

Please post any other questions or other issues you are having. We are always here to listen...

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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