Radical Cystectomy: Would like to hear the experiences of others

Posted by sue225 @sue225, Sep 29 9:43am

My husband (79) who has had bladder cancer for 17 years must now have a radical cystectomy most likely before December. Would like to hear from others who have undergone this surgery (recovery, etc.) and how they have adjusted to living with a bag. (Neo bladder not a possibility due to prior radiation for prostate cancer which thankfully is a non-issue now).

@sue225 I’m sorry, i just saw your post. It sure sounds like your husband has had a difficult few years and now to be faced with a cystectomy. I worked on an oncology/urology unit so i might have some helpful information. Will your husband care for the bag and tubing or will you help him? You both want to start now and gather as much information as you can so you’ll be comfortable and not overwhelmed after surgery. Here is a link to an previous discussion that you may find helpful
https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/
Have you asked the surgeon if he has other patients that you can talk with?

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Thanks for your reply. Prior to the cystectomy, their will be meetings at the hospital with a nurse (& not sure who else right now) re what to expect (recovery period, post recovery, etc. ). My husband could (on-line) connect with a bladder cancer group and chat with others who have gone through this surgery and ask questions re life post cystectomy.
I would be most interested in hearing from Mayo Connect members who have
had a cystectomy.
You are absolutely right about being prepared. This week my head is still buried in the sand but I know I have to deal with what lies ahead. Thanks so much.

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@sue225 I’m going to ask several members to join this discussion: @katydid77 @dideon @duckduck2020 They may have some good info for you
Do you think that you could join the on-line group so you will know first-hand what your husband will/is experiencing?

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@sue225, my heart goes out to you and your husband This is not an easy situation to get used to but it is not impossible. There is a lot of help out there in the form of info but just finding out what products work for him is a challenge. Don’t hesitate to try different pouches, etc. Ask the manufacture’s rep.for free samples and talk to their ostomy nurse. They all have someone who will help you problem solve. We are lucky here in the Jax, FL area to have a supplier who personally has an ostomy. I have found them to be so very helpful.

My husband was unwilling to use any of the support sites so we were on our own trying to find a pouch that did not leak. After meeting with the support team at Mayo Jax for the third or fourth time we finally found a deep convex flange which stopped the leakage. You need to realize that as time passes, the stomach area continues to change as the body recovers from the surgery itself. He may gain weight or lose weight and either one will affect the fit. There will probably be spillage accidents also as he will need to hook up to a night drainage bag. He may find he has to sleep on his back all night and that offers challenges. Have the phone number of a good carpet cleaner and explain to him what he will be dealing with. We lucked out in that the carpet cleaner’s father was also a urostomy patient so he taught me what to do when an accident happened at night.

We would have several days of success and then for no apparent reason there would be a leakage. This undermines their confidence so you have to keep trying until you find the combinations that work for his body shape. One thing you learn is that all the seals that go around the stoma or around the outside edge of the flange will only hold the urine against the skin if the flange does not fit right. Now we are able change out once a week and have not had any more night accidents.

Another thing we found that helped my husband sleep is to get the pressure of the bed covers off his feet. If that proves to be a problem, there is a frame you can order online that hold the covers above his feet.

I hope I have not given you too much info. If you can get a home health nurse for a few weeks who understands ostomies, she can be a life saver. The one who came to our house evidently had never seen one, much less taught someone how to care for it. We discharged her after the initial visit.

Eventually, it becomes part of your daily routine as I am sure you have done before considering his history with cancer.

My husband was 86 years old when he had the surgery and was back to playing good golf in about nine months. That was a year ago. Good luck and God bless. Do not hesitate to post again if we can help.

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@katydid77

@sue225, my heart goes out to you and your husband This is not an easy situation to get used to but it is not impossible. There is a lot of help out there in the form of info but just finding out what products work for him is a challenge. Don’t hesitate to try different pouches, etc. Ask the manufacture’s rep.for free samples and talk to their ostomy nurse. They all have someone who will help you problem solve. We are lucky here in the Jax, FL area to have a supplier who personally has an ostomy. I have found them to be so very helpful.

My husband was unwilling to use any of the support sites so we were on our own trying to find a pouch that did not leak. After meeting with the support team at Mayo Jax for the third or fourth time we finally found a deep convex flange which stopped the leakage. You need to realize that as time passes, the stomach area continues to change as the body recovers from the surgery itself. He may gain weight or lose weight and either one will affect the fit. There will probably be spillage accidents also as he will need to hook up to a night drainage bag. He may find he has to sleep on his back all night and that offers challenges. Have the phone number of a good carpet cleaner and explain to him what he will be dealing with. We lucked out in that the carpet cleaner’s father was also a urostomy patient so he taught me what to do when an accident happened at night.

We would have several days of success and then for no apparent reason there would be a leakage. This undermines their confidence so you have to keep trying until you find the combinations that work for his body shape. One thing you learn is that all the seals that go around the stoma or around the outside edge of the flange will only hold the urine against the skin if the flange does not fit right. Now we are able change out once a week and have not had any more night accidents.

Another thing we found that helped my husband sleep is to get the pressure of the bed covers off his feet. If that proves to be a problem, there is a frame you can order online that hold the covers above his feet.

I hope I have not given you too much info. If you can get a home health nurse for a few weeks who understands ostomies, she can be a life saver. The one who came to our house evidently had never seen one, much less taught someone how to care for it. We discharged her after the initial visit.

Eventually, it becomes part of your daily routine as I am sure you have done before considering his history with cancer.

My husband was 86 years old when he had the surgery and was back to playing good golf in about nine months. That was a year ago. Good luck and God bless. Do not hesitate to post again if we can help.

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@katydid77 thank you so much. You have given me a lot of practical info that is not in the 25 page booklet the nurse gave to my husband last week re cystectomy. I was not able to go to that appt. (in Canada, Covid regulations), however I will be with him at the appt three weeks prior to surgery so now I will know what to ask re pouches, stoma issues etc. Also, the tip re sleep position and that special frame. (Information not in the pamphlet).
I would definitely feel better having a nurse around in the week(s) after surgery and will ask for someone experienced.
Did your husband have serious weight loss after the surgery? The oncologist/urologist mentioned this. And the booklet talks about liquid diet, bland foods, and small portions.
The best part of your reply was telling me your husband had his surgery at 86 and was back to golfing in nine months! That is wonderful.
Thank you again for writing to me. Your reply has been very helpful. I have been feeling totally overwhelmed and wondering if I'll be able to cope with everything.
Wish both you and your husband good health.

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@becsbuddy

@sue225 I’m going to ask several members to join this discussion: @katydid77 @dideon @duckduck2020 They may have some good info for you
Do you think that you could join the on-line group so you will know first-hand what your husband will/is experiencing?

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Thankyou @becsbuddy. As you can see below @katydid77 has replied to me and I am so grateful to both of you for your help and kindness.

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I would love to hear from someone with a Neobladder surgery. My husband will be undergoing this surgery in December for bladder cancer.

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@sepdvm Welcome back to Mayo Connect. I’m hoping that some members who have had experience with neobladder will see your post and respond. While we wait, i found this video by a Mayo surgeon that may be helpful.

Also, if you go to the bottom of this page (where it turns blue), on the left side you will see MayoClinic.org. That is the Mayo Clinic website. Put ‘neobladder’ in the search box, and lots of different choices of articles will come up.

Bladder cancer treatment options Videos – Mayo Clinic
And how are you doing?

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@becsbuddy

@sepdvm Welcome back to Mayo Connect. I’m hoping that some members who have had experience with neobladder will see your post and respond. While we wait, i found this video by a Mayo surgeon that may be helpful.

Also, if you go to the bottom of this page (where it turns blue), on the left side you will see MayoClinic.org. That is the Mayo Clinic website. Put ‘neobladder’ in the search box, and lots of different choices of articles will come up.

Bladder cancer treatment options Videos – Mayo Clinic
And how are you doing?

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I am currently stable with metastatic squamous cell carcinoma. On Cemiplimab immunotherapy for the last 9 months which is shrinking the latest metastasis to my kidney. I feel pretty good, just tired from the treatment. Much more concerned about my husband's more active cancer right now. Having been a Mayo Rochester patient for 9 years, I have read the Mayo articles on neobladder but had not seen the video. Thank you. Always nice to get a patient's viewpoint on these things tho.

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@becsbuddy

@sepdvm Welcome back to Mayo Connect. I’m hoping that some members who have had experience with neobladder will see your post and respond. While we wait, i found this video by a Mayo surgeon that may be helpful.

Also, if you go to the bottom of this page (where it turns blue), on the left side you will see MayoClinic.org. That is the Mayo Clinic website. Put ‘neobladder’ in the search box, and lots of different choices of articles will come up.

Bladder cancer treatment options Videos – Mayo Clinic
And how are you doing?

Jump to this post

@sepdvm i totally forgot to say that when i was working as a nurse, i worked on a urology unit. That was in the earlier days of the neobladder so I don’t know all the improvements, but i do know the patients were very happy with the results! I hope it will be the same for your husband. Becky

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@sue225 and @sepdvm, you are both also invited to attend the Mayo Clinic Ostomy Support Group. The Mayo Clinic Ostomy support group meets monthly, on the first Tuesday of the month from 6 to 8 PM MT and is facilitated by an Ostomy Nurse Specialist. The meetings are on Zoom and all are welcome no matter where you live or if you are a Mayo patient or not. Caregivers welcome too. Each meeting will feature a relevant topic and a guest speaker. Topics have included: stoma and skin management, ostomy care and products, nutrition related to ostomates, motivational ostomate speakers and emotional support.

You do have to register before hand to get the Zoom link for the meeting. To register, simply email ARZMCOSTOMYSG@mayo.edu.

The next meeting is Nov 2. Here’s more info https://connect.mayoclinic.org/event/ostomy-support-group-106/

@sepdvm, please join this discussion to learn more about the neobladder from other members:
– Neobladder Replacement vs. Stoma https://connect.mayoclinic.org/discussion/neo-bladder-replacement/

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@colleenyoung

@sue225 and @sepdvm, you are both also invited to attend the Mayo Clinic Ostomy Support Group. The Mayo Clinic Ostomy support group meets monthly, on the first Tuesday of the month from 6 to 8 PM MT and is facilitated by an Ostomy Nurse Specialist. The meetings are on Zoom and all are welcome no matter where you live or if you are a Mayo patient or not. Caregivers welcome too. Each meeting will feature a relevant topic and a guest speaker. Topics have included: stoma and skin management, ostomy care and products, nutrition related to ostomates, motivational ostomate speakers and emotional support.

You do have to register before hand to get the Zoom link for the meeting. To register, simply email ARZMCOSTOMYSG@mayo.edu.

The next meeting is Nov 2. Here’s more info https://connect.mayoclinic.org/event/ostomy-support-group-106/

@sepdvm, please join this discussion to learn more about the neobladder from other members:
– Neobladder Replacement vs. Stoma https://connect.mayoclinic.org/discussion/neo-bladder-replacement/

Jump to this post

Colleen, thank you so much for making me aware of this group. Both my husband and I have registered for the Nov. 2 Zoom event.

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