1. < Ostomy

Bladder cancer: Is a stoma the same as an ostomy?

Posted by Barb @amberpep, May 15, 2020

I have a very dear friend who has been diagnosed with bladder cancer. She's had one "scraping" and then about 3 weeks later another. Then this week she had 2 days of chemo. and that's it for that week, then 2 the next week, and 2 the following week. From what I understand there is one more 2-day round of chemo. and then they will x-ray it, and probably do surgery. She will then have a stoma ….. is that the same as an ostomy? The surgeon told her the opening would be at her belly button.
Can anyone tell me what this is like? Anytime someone says cancer, I fear for them.
abby

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Barb | @amberpep | Jul 4, 2020

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy ... 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" - I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player - abby

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 4, 2020
In reply to @amberpep "I have a very dear friend who has been diagnosed with bladder cancer. They scanned her..." + (show)
@amberpep

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy ... 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" - I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player - abby

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@amberpep, I'm glad to get an update about your friend. You'll notice that I moved message to this discussion that you started earlier. I did this so that members like @katydid77 @becsbuddy @singalsk @engelee @bcstew @hodagwi @nene22 @john0416 @tattrigoo who are familiar with bladder cancer and stomas can offer first hand knowledge and experience.

You can get some information here from the American Cancer Society
- Urostomy https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/surgery/ostomies/urostomy/what-is-urostomy.html

But I agree that it really helps to talk with people who have gone through the experience of getting a urostomy. Members here can help answer your questions about what the surgery is like. Where they make the incision, the recovery time and how long until one learns how to change the bag.

How is she doing on chemotherapy, Abby?

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 5, 2020
In reply to @amberpep "I have a very dear friend who has been diagnosed with bladder cancer. They scanned her..." + (show)
@amberpep

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy ... 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" - I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player - abby

Jump to this post

@amberpep This is a very kind and considerate thing, to get some information on your friend's situation. This will certainly help you to understand what she is going through, and also help her, knowing she has a friend who is so concerned for her! How is she feeling today, and are you both in the same town to be able to offer support?
Ginger

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 5, 2020
In reply to @amberpep "I have a very dear friend who has been diagnosed with bladder cancer. They scanned her..." + (show)
@amberpep

I have a very dear friend who has been diagnosed with bladder cancer. They scanned her and it has not metastasized, fortunately. She is now in the process of receiving chemotherapy ... 2 weeks on (2 days a week) and 1 week off, then the pattern repeats. They are anticipating that either late August or early September they will be able to do surgery and then she will have a "stoma" - I don't think that's the name for kidney/bladder problems, but more for intestines. She's been dealing with this for about 2-3 months now and except for fatigue she's doing well. Can anyone tell me what exactly it is like to have this surgery? Where is the incision, the bag, how long is the recovery and how long until one learns how to change the bag. Thanks very much.
harp player - abby

Jump to this post

Hello, @amberpep . I am very glad to hear that your friends bladder cancer has not spread. That’s really good news. Is she doing alright with the chemo?
I found this information on bladder removal. Recovery can take awhile since it’s major surgery. She can expect to remain in the hospital for 4-5 days and during this time she’ll learn how to care for the ureterostomy. The hospital will probably set up for homecare. Nurses will come to the house and continue to teach her.

https://www.mayoclinic.org/tests-procedures/cystectomy/about/pac-20385108

You can be invaluable help to her by listening and supporting her. Talk about all the fun things going on and forget the current news. Facebook is a great way to communicate. You have sounded so positive lately that I know you’ll be good for her!
Please feel free to ask us more question. Becky

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katydid77 | @katydid77 | Jul 5, 2020

.Harp player. I replied to you on May 16 and again on May 21. Can you find them?

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Barb | @amberpep | Aug 14, 2020

I have a dear friend who was diagnosed several months ago with bladder cancer. She went through chemo for the prescribed time, they checked it again and it has shrunk enough that they are going to remove the bladder on Monday. She will then be wearing a bag for the urine to pass into. She will be in the hospital about 5 days, and possibly rehab. for a time. Then she'll come home and her daughter and granddaughter will alternate times to help her with whatever she needs .... they're both nurses. After that, I'm going up for a week to help wherever I can and bring a little craziness and sunshine to her life. My question is ..... how prevalent is it for this to return somewhere else?
abby ala' harp player (sort of)

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 14, 2020
In reply to @amberpep "I have a dear friend who was diagnosed several months ago with bladder cancer. She went..." + (show)
@amberpep

I have a dear friend who was diagnosed several months ago with bladder cancer. She went through chemo for the prescribed time, they checked it again and it has shrunk enough that they are going to remove the bladder on Monday. She will then be wearing a bag for the urine to pass into. She will be in the hospital about 5 days, and possibly rehab. for a time. Then she'll come home and her daughter and granddaughter will alternate times to help her with whatever she needs .... they're both nurses. After that, I'm going up for a week to help wherever I can and bring a little craziness and sunshine to her life. My question is ..... how prevalent is it for this to return somewhere else?
abby ala' harp player (sort of)

Jump to this post

Hi @amberpep, I moved your message to the discussion you started about your friend and her journey with bladder cancer. That's great news that the chemo shrunk her cancer enough that she can have surgery.

The likelihood of cancer to return or metastasize somewhere else is dependent on several factors, like the stage and type of bladder cancer, and more. Here's more info:
https://www.cancer.ca/en/cancer-information/cancer-type/bladder/prognosis-and-survival/

Do you know if the cancer was localized (contained within the bladder) or regional (spread to the lymph nodes) or distant (found elsewhere in the body)? They may only know this information after surgery.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 14, 2020
In reply to @amberpep "I have a dear friend who was diagnosed several months ago with bladder cancer. She went..." + (show)
@amberpep

I have a dear friend who was diagnosed several months ago with bladder cancer. She went through chemo for the prescribed time, they checked it again and it has shrunk enough that they are going to remove the bladder on Monday. She will then be wearing a bag for the urine to pass into. She will be in the hospital about 5 days, and possibly rehab. for a time. Then she'll come home and her daughter and granddaughter will alternate times to help her with whatever she needs .... they're both nurses. After that, I'm going up for a week to help wherever I can and bring a little craziness and sunshine to her life. My question is ..... how prevalent is it for this to return somewhere else?
abby ala' harp player (sort of)

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@amberpep How nice that you can spend some time with your friend. I'm sure that she and her family will appreciate your being there. I hope you can both share some sunshine together.
How long do you plan on staying?

REPLY
fiesty76 | @fiesty76 | Aug 15, 2020
In reply to @amberpep "I have a dear friend who was diagnosed several months ago with bladder cancer. She went..." + (show)
@amberpep

I have a dear friend who was diagnosed several months ago with bladder cancer. She went through chemo for the prescribed time, they checked it again and it has shrunk enough that they are going to remove the bladder on Monday. She will then be wearing a bag for the urine to pass into. She will be in the hospital about 5 days, and possibly rehab. for a time. Then she'll come home and her daughter and granddaughter will alternate times to help her with whatever she needs .... they're both nurses. After that, I'm going up for a week to help wherever I can and bring a little craziness and sunshine to her life. My question is ..... how prevalent is it for this to return somewhere else?
abby ala' harp player (sort of)

Jump to this post

@amberpep, What a great friend you are to plan on spending a week with your friend and how fortunate she is to have you. I know nothing about bladder cancer but do know your being with her will add much welcomed smiles and happiness to her life as she makes new adjustments to her situation. Can you take along a "mini-harp" for some music as well? Smiles and best to you both.

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