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UTUC

cgov2626
Posts: 3
Joined: May 2021

Hi I am new to the site. I am so glad this is here for support. I had blood in my urine 5 months ago which went away but brought me to this point, so no pain and no other symptoms. Having Nephrourterectomy surgery May 24. UTUC found in kidney lining and ureter. Removal of kidney, ureter, and bladder cuff To remove cancer. Not exactly kidney cancer but upper tract cancer which is rare abd has some similarities to bladder cancer. I researched everywhere to see if there were other options besides removal and I got nowhere. 2nd opinion confirmed diagnosis and removal. Early stage (Oa) and noninvasive (Ta)as far as they can see now. Will know more after they can study the kidney etc if I need chemo IV drugs. I, too, was figuring out if I could recover with family and stairs (10) or remain home alone on 1 floor. I will need to go up and down to eat because my mother had knee surgery and can't help much, but at least I won't be alone. Can anyone offer any insight or advice about after surgery and what challenges there might be? 

tgpath1's picture
tgpath1
Posts: 28
Joined: Apr 2021

I'm sorry that you are going through this.  It's definitely scary but this is a great group for information and support.  Everyone has a different experience..but for me, as long as i moved slow, I could do stairs without issue.  However, I found that for the first week, I had a hard time standing for any period of time so I was glad to have someone here to cook for me.  Few things i wish I had known...I wish I had gotten a shower chair as even trying to take a quick shower would exhaust me and I would need to take a break in between.  I also wish I had thought to get a body pillow.  Laying on my side was impossible for the first week (and I'm a side sleeper) so when I could finally try, I could not do it without a pillow between my legs to relieve the pressure on my abdomen.  A regular pillow works but a body pillow is far more comfortable.  My experience was that I was very sore and limited movement for two weeks.  The following two weeks, I could move better but was still sore and got very fatigued if I tried to do too much. 

cgov2626
Posts: 3
Joined: May 2021

This information is so helpful. Thank you.

eug91's picture
eug91
Posts: 317
Joined: Jan 2019

Yes to everything tgpath wrote above - you will be tired. 

As for specifics about your UTUC, if you haven't already, considering signing up over at smartpatients.com. I've seen more UTUC discussion there than here. 

Good luck with your upcoming surgery. You're gonna do great!

cgov2626
Posts: 3
Joined: May 2021

I will check out the other site. Thanks!

Deanie0916
Posts: 403
Joined: Nov 2016

All good information above. Not much to add except take it slow. I have stairs and had someone stay with me overnight then I was on my own. The side sleeping is a problem. All the best to you.

jazzgirl's picture
jazzgirl
Posts: 202
Joined: Nov 2017

Hi cgov, I was staying with a friend after surgery basement, first floor, bedroom on second floor. The stairs turned out to be a blessing for me as TV was in basement and I spent a lot of very, very slow time on the stairs, which built up strength, stamina, balance, and confidence in my growing independence. Just make sure there is a handrail and that it is very secure. For a while it was left foot up, right foot up to same step. Repeat. Baby-like. Even more careful down. It was my best exercise routine besides walking. Take care ~

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