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New Neobladder

6 years 11 months ago #44509 by wsilberstein
Congratulations Cady! You should not spend your life worrying about cancer. I never did. But don't become complacent either. Cytologies and follow up cystoscopies with biopsies as indicated, at regular intervals for the rest of your life, are essential. Had I let my urologist convince me that after 10 years cancer-free I could forego the cystoscopies, I'd surely be dealing with invasive cancer and a much worse prognosis now.
BTW, I never answered - whether or not any robotics were used, I don't know, but my surgery was not laparoscopic. I have a long abdominal scar.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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6 years 11 months ago #44508 by Cady
Reprieve!!! The path lab at the Mayo Clinic (where my latest cytology was sent for confirmation or review of the findings by the lab here) came back and my doctor called this morning with the great news. Mayo feels that the strange cells are reactive cells and not cancer. As you know, that's a major relief!

But these past few days taught me something. It"s too exhausting to be "a cancer patient" all day. I decided that I would only be a person with cancer before noon each day-- and even with that, it would have to fit in before or after my hike. I told that to my daughter and she put it on her Facebook page.

So.... Thank you again. I hope your recovery continues on a good trajectory. Your attitude is a great and helpful example.

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6 years 11 months ago #44496 by wsilberstein
Dear Cady,
I don't think I'm stoic, although my tolerance for pain may have been affected by the years of misery I went through with a urethral stricture before I had my first recurrence (cancer free for 10 years before the recurrence battle started). I really was at the point where my bladder had made me so miserable I was glad to be rid of it. Plus I had no doubt that it was the right decision, so I went into surgery with a positive attitude. My brother told me about a friend of his who was miserable after the surgery, and I was determined not to be that guy.
They got me out of bed the day after the surgery. I just did a little walk that day. I was dripping from around all my tubes and drains, making a mess on the floor, and we finally figured out that the only thing that would catch it all was a diaper. I was determined to take at least 3 half hour walks per day and couldn't stand waiting for the nurses to help me get ready, so I figured out how to diaper myself by laying it in the chair and sitting in it. What you're hearing about is my determination to heal and get well. I think it makes a difference, and you can do it.
I'm not really exercising yet except for walking. The incontinence has thrown me a bit for a loop. Aside from the fact that I was uncomfortable with diapers and pads, I has a few occasions when they leaked. Right now I'm using a condom catheter called Gee Whiz. I think it works pretty well, but there's a learning curve in putting it on correctly, and I've had a few disasters where it came off, so I'm afraid to do anything that might yank it. Also, I was told not to do anything strenuous or lift anything heavy for 6 weeks, although my 2 year old grandchildren (quadruplets) are all yelling "Papa, up!" and were getting tired of being told that grandpa has a boo boo, so I finally decided to pick them up (but only 1 at a time). Frankly I think that was less strenuous than post op bowel movements. ;)

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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6 years 11 months ago #44495 by Cady
Ohhhhhhh! Thank you so much! I copied your post because it has helped me so much to hear it. I had such a hard time with the BCG treatments that when you say the post op wasn't as bad as that, I feel that I will not have such a hard time with the surgery. Uh, maybe you are stoic so I should take that into consideration.
Did your doctor use that robotic machine thing... Or was there a big incision?
After the surgery, do you also have chemo and/or radiation?
Sorry for so many questions. I just found out about the recurrence so I am pretty rattled. I was clear the end of December and I guess I thought I would be clear now too.
Thank you again for sharing your experience. I am so much calmer.
Also, I'm a big hiker so I was glad to hear about you being able to walk around the ward. Was that the day after the surgery? And when is a person (on average) able to resume exercise?
Thanx
Cady

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6 years 11 months ago #44494 by wsilberstein
Went in on a Tuesday. Surgery didn't start until 11, didn't finish until late. Went home the following Wednesday. Did a lot of walking around the ward - good for recovery. I had an epidural PCA, but didn't push the button much. The baseline handled the pain quite well. Once they removed the epidural I only took IV Tylenol for the pain, and that was rare. Of course, everyone is different, but I didn't think the post op recovery was so bad. My reaction to the BCG/interferon was worse. I'm almost 5 weeks out, and if I weren't incontinent, I'd be saying life was great!

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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6 years 11 months ago #44491 by Cady
Can I ask how long you were hospitalized?
I'm likely facing the surgery soon as I have my second recurrence--and it sounds pretty scary.
Thanx for your posts. It's somehoeco forging to read.
Cady
Dx 10/04/10

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