Urostomy and Ostomy

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worriedson714
Posts: 49
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Urostomy and Ostomy

Postby worriedson714 » Mon May 03, 2021 4:58 pm

My dad has battled rectal cancer for two years and now there saying it's back and growing biopsy on the 12th also he has a urostomy and ostomy bags which cause him to suffered from UTI"s this is his fourth one in about a month . So I have been searching the internet high and wide looking for cases like him cause i am freaking out with fear that oncologist will refuse treatment due to infection risk . So my question is does anyone have or know someone with a urostomy or ostomy or both who suffers from UTI infections and still gets or has gotten chemo ? Is there way's for the oncologist to manage this and still give the patient the needed treatment ? Or am I right to be worried about this interfering with treatment ? Please guys really need some help with this oncologist won't tell me nothing until the biopsy comes back .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Urostomy and Ostomy

Postby beach sunrise » Tue May 04, 2021 12:36 am

Hi, I have no experience with this but others might. You can do a search on here to find info on UTI's.
Good luck, you are a very good son it seems.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test


catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Urostomy and Ostomy

Postby catstaff » Tue May 04, 2021 8:02 am

My husband has a urostomy but has not had UTIs (knock wood) since the stents were removed after the surgery. (They were left in longer than usual and made a nice conduit for external bacteria.) He is currently on chemo so that's not an issue by itself. I'd assume they would make an effort to clear up the infections first. When he was having recurrent UTIs before surgery due to a fistula into the prostate, he was hospitalized a couple of times for more potent antibiotics.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 49
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Urostomy and Ostomy

Postby worriedson714 » Tue May 04, 2021 4:58 pm

@catstaff then after the infections broke did they go back to chemo ?

I will for sure check out the links to and thanks for the replies you guys are my only hope cause the oncologist is no help at all in this conversation . We found out my dad also has kidney stones and a staghorn renal stone and some other things going on in his kidney that can also cause UTI's .So I ask the oncologist if we should have his kidney's taken care of first to reduce some of the infection risk wouldn't even give me opinion said it's up to the kidney doctor . The kidney doctor of course says it's up to the oncologist how can you make a informed choice with no doctors input ? :( wish I knew .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Urostomy and Ostomy

Postby Lee » Tue May 04, 2021 8:10 pm

You might want to post your question to this forum.

https://www.uoaa.org/forum/index.php?si ... 23bf8bbcd2

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Urostomy and Ostomy

Postby catstaff » Thu May 06, 2021 10:36 am

Really a bummer when two doctors keep passing the patient off to the other. My husband wasn't on chemo when he had the infections. He didn't have a (known) recurrence at that time. I was just noting that a urostomy itself is no inhibitor to chemo. But seems like your father would perhaps become even more prone to infection after several cycles, since it does depress the immune system. Also one would think that four infections in a month would be reason enough alone to try to attack that problem.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Urostomy and Ostomy

Postby beach sunrise » Thu May 06, 2021 11:16 am

One thing I have found by reading this forum is you have to go into an appt with your concerns and research papers to back it and not take NO for an answer.
Like CRguy and rp1954 say: You miss more by not looking......expand the bloodwork for trends.
To add one example: my first onc was scary min SOC. I needed celebrex to control the inflammation and had papers to back it. He said "I read studies to and have found nothing that shows it helps." My response was "Well, looks like this appt is about cherry picking so I will go else where and I did."
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

worriedson714
Posts: 49
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Urostomy and Ostomy

Postby worriedson714 » Thu May 06, 2021 11:49 am

That's what I am figuring is my dad will be even more infection risk after some chemo but yet the oncologist's nurses tell me some chemo don't even affect the immune system which i think is a lie . Just wish the oncologist would give us a idea how worried he was about the infection risk last appointment which i wasn't in he told my dad a infection could kill him in six hours . Told my dad that chemo " wouldn't be no kind of life " and brought up hospice but then also offered treatment in the same appointment . Mind you my dad is stage 3c no spread to distant organs physically he goes grocery shopping no wheelchair or even walker cooks goes for walks showers himself . Has only had 1st line treatment and he brings up hospice ? Shocked me now his nurses won't even answer basic questions like is the oncologist worried about infection does he think treatment can work and could my dad take chemo while on his antibiotics . Nurse actually told me not all chemo's depress immune system which i know to be a lie we got a second opinion they seem much more hopefully . But it's two hours away idk how we can afford to travel so much so idk if that's going to happen . It's just shocking i can't get a simple answer from oncologist can a high infection risk patient be managed to lower the risk on chemo .
Thank you all so much for the replies but I don't think I'm going to find the answers I seek until after the biopsy which I don't know if it's even going to happen cause oncologist and radiation oncologist think it's to dangerous want dad to go straight to chemo or rad . Sorry to type so much just want to help my dad and not sure how to at the moment .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Urostomy and Ostomy

Postby beach sunrise » Thu May 06, 2021 3:14 pm

Lee's advice might give you some leads to answers.

also, has your dad consulted with a urologist that specializes in treating cancer patients? I really don't see his oncologist being to much help with it.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

worriedson714
Posts: 49
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: Urostomy and Ostomy

Postby worriedson714 » Thu May 06, 2021 4:22 pm

Followed Lee's advice and posted there and the said thing is my dad's urologist just was diagnosed with late stage cancer so he's out on chemo . Maybe your right though I'll call and see who his new urologist is I didn't even think of that thank you .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped


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