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BCC is excited to launch a new support group – the Urinary Diversion Support Group – for individuals living with a urostomy (ileal conduit), neobladder, or Indiana pouch. This virtual group meets on the 3rd Thursday of every month at 7pm (ET). The first meeting will be on March 20, 2025.
To join this group, or for more information, please e-mail diversionsupport@bladdercancercanada.org.
- Marilou (marilouc@bladdercancercanada.org)
In reply to: Information overload or not enough?
Hi rcs2024,
My name is Marilou Cameron and I am the Bilingual Program Support Coordinator at Bladder Cancer Canada. I am in charge of our One2One Peer Support Program, which allows you to connect with specially trained volunteers who have also been affected by bladder cancer. These volunteers can offer their unique perspective and help answer some questions you have about the ileal conduit. Please feel free to send me an e-mail at marilouc@bladdercancercanada.org and I will be happy to connect you with a volunteer that most closely matches with your situation.
All the best,
- Marilou (marilouc@bladdercancercanada.org)
Hi,
I am 64 yearold male with stage 2 (muscle invasive) bladder cancer, and am scheduled for a radical cystectomy December 5th.
I am completing my 3rd cycle of chemo this Saturday. There may be a modified 4th cycle, but they don’t want to push the surgery date to 2025.
I have chosen an ileal conduit (Urostomy).
Of course I have been googling and using YouTube, but am really unsure if I’m getting correct or relevant information?
Specifically:
Recovery time expectations.
Issues during recovery.
Two or one piece ostomy bag.
Really any good information I can read from surgery to home.
Thank you for any assistance!
In reply to: Ileal Conduit or Neobladder Decision
Good morning all- I’m a 50 year old woman diagnosed in August 2024 with stage 2 MIBC. I’m just about to start round 2 of 4 chemotherapy prior to RC in January 2025. I’m looking for any women ( sorry guys) that have had a Neo bladder for any length of time and their experiences with it. Also, if anyone with stage 2 or more that has any information regarding bladder preservation and if they were given any options regarding that. I thought I knew this is what I wanted but when I went to my surgical consult last week, he didn’t paint a very nice picture and I felt he tried to discourage me and steer me toward the ileal conduit. I’ve been otherwise healthy to this point and don’t have any other medical conditions. Thank you in advance.
Hi Todd B,
I have a similar situation to you in that I have had several cancers over the last 5 years. I am a male in my early 70’s and try to help my wife as much as possible but that isn’t always possible. I had bladder cancer diagnosed in 2018 and had my bladder removed in 2019 and I now have an ileal conduit. I also belong to the Hamilton support group that Nightingale has suggested you participate in.
I am presently on my second treatment with chemotherapy and it is taking a toll on my ability to do regular chores. Each treatment brings new challenges and different symptoms. My wife and I do talk about the effects of the chemotherapy and what we can do to alleviate each others shared chores.
We both have problems as while I was undergoing treatment, my wife went through breast cancer and knee replacement so sometimes we had to rely on other family, friends and neighbours.
hello all.
my husband(62) is newly diagnosed with T1 bladder cancer he also has chrons diease. How we got here, in October he was peeing blood we though bladder infection been having some trouble in summer with being up alot at night to pee. off to emergency we go after a few blood test and urine tests they come back and say no infection but booked a ultrasound for next day, it was a Friday. Monday they call to say thy found mass in the bladder a bit smaller than a golf ball, I than read his medical chart that we have access to and i see the urine test report say high grade carcinoma. so now he is than booked a cystoscope. they go in see the tumor. rebook a surgery for a month later to remove. it goes to pathology as well as a another biopsy they took. than he has a CT scan. 2 weeks after surgery he has a phone apt with the urologist who did the TURBT he say its high grade but not in muscle so the treatment should be BCG or new bladder do to age. so now this past Friday we go to oncology urologist and he did another scope and than we sit and he tell us the only option is Ileal conduit because he sees a thicking wall on right side of bladder. so 3 months of chemo than Ileal Conduit. Now on the ultrasound 2 months before didn’t show the thicking of the wall, he had a bladder infection(we didnt know than) at time of CT he also has right hip replacement and it causes shadows on the scan that make it hard to fully see the wall thicking so we are wondering if that could be the infection. it just seams to be a crazy big jump form T1 high grade to Ileal we are i guess asking if anyone else has had this or some input. we are requesting another ultrasound and CT was requested by new urologist, would a MRI show more? Can we not try the chemo for 3months and BCG at same time and see how that goes? Sorry for so amnt questions and a huge thank you for all who share their life so newbies like us can read and get educated.
Brandi and Ted
My husband has stage 4 bladder ca spread to bone.. for longest time he’s been having burnng sensation at tip of penis .. when this happens it kind of is an indication that he has to go towards bathroom .. we’ve mentioned this to all our drs and they have no idea.. now husband is having pain in scrotum.. ultra sound and xrays haVe been done showing nothing.. if any men know what im talking about pls reach out.. he has ileal conduit so no bladder nor prostate.. ty
In reply to: Chemo Therapy or Remove Bladder.
Hi Scubamike,
I would like first clarify that the study by University of Montreal distinguish from those who had radiation therapy was given the treatment with the intention to cure (cancer free) or for palliative care. It might have made the cancer specific mortality rate with radiation therapy higher than if only it included the radiation treatment with intention to cure. It is noted that 1551 (43.5%) out of 3589 patients age 80+ received RC. If RC is very risky for elderly patients, I would not think 43.5% of patients age 80+ had chosen RC.
Lets explore actual clinical studies the risk of RC for elderly patients.
- UK(2017) – a single hospital Department of Urology, Pinderfields General Hospital, Mid-Yorkshire Hospitals Trust, Wakefield, West Yorkshire, UK Retrospective study of patients who had RC in 2013-2015. 51 patients were 74 years old and younger and 30 patients were 75 years old and older. The mean age was 70.7 years old (36-85). RC in patients aged ≥75 years has similar perioperative morbidity when compared with younger patients and can be offered in selected elderly patients. Thus, age should not be an absolute contraindication for RC. The 30-day mortality rate was 4% for those aged <75 years and 6.6% for those aged ≥75 years, with overall perioperative complication rates of 57% vs 66%, respectively. Most complications were minor. The conclusion RC in patients aged ≥75 years has similar perioperative morbidity when compared with younger patients and can be offered in selected elderly patients. Thus, age should not be an absolute contraindication for RC.
- Poland (2021) – Age and risk of major complications in patients undergoing radical cystectomy for muscle invasive bladder cancer Dept of General Oncologic Urology, Nicolaus Copernicus Hospital, Poland : 434 patients with MIBC who underwent radical cystectomy between 2012 and 2016, and classified them into three age groups: < 65, 66–74, and ≥ 75 years . Age was not a significant predictor of major complications, long hospital stay, or blood loss. Older age was associated with shorter surgery times. Therefore, , older age alone should not be contraindication to this operation.
- Germany (2018) – Predicting 90-day and long-term mortality in octogenarians undergoing radical cystectomy. 1184 consecutive patients who underwent radical cystectomy for high risk superficial or muscle-invasive bladder were split into two groups (age < 80 years versus 80 years or older). Only age predicted 90-day mortality in patients aged 80 years or older. Concerning 90-day mortality, chronological age provided prognostic information whereas comorbidity did not. Cumulative mortality rate from bladder cancer at 5 years was 30% for < 80 years old and 42% for 80+ years old. and at 10 years 38% for <80 years old and 42% for 80+ years old. Cystectomy should not be denied in octogenarians by numeric comorbidity. Concerning 90-day mortality, in octogenarians selected for radical cystectomy chronological age could have greater impact than numeric comorbidity.
- US (2001) – Department of Urologic Surgery – Vanderbilt University, Tennessee – The journal of urology :RADICAL CYSTECTOMY IS SAFE IN ELDERLY PATIENTS AT HIGH RISK. 382 patients had RC between 1994-2000. 44 were elderly and at high risk, as defined by age 75 years old and greater and American Society of Anesthesiologists classification 3 or greater. We examined postoperative care, perioperative minor/major complications, the mortality rate and the need for rehospitalization. Median age was 77.5 years (74-87). Median hospitalization was 7 days (range 4-20 days). 70% of patients were transferred directly to the general urology floor after the surgery, while 30% was required for cardiac monitoring. 4 required surgical intensive care unit admission. Minor and major complications developed in 10 (22.7%) and 2 (4.5%) cases, respectively. No patients died in the perioperative period and 4 patients were hospitalized within 6 months of discharge home. The conclusion Our results support the safety of radical cystectomy in elderly patients at high risk. Acceptable perioperative morbidity and mortality may be achieved without routine intensive monitoring postoperatively.
How to mitigate the risk for RC surgery.
1. Choose less risk urinary diversion because it takes less operation time. The IC surgery takes 2-4 hours. Neobladder takes 4-8 hours. Note Ileal conduit (IC) is incontinent and will require external bag to collect urine via stoma on belly.
2. Choose standard lymph node resection vs extended lymph node resection. Dr. Black of VGH has stopped extended lymph node resection after the clinical trial found out there were no benefits of extended lymph node resection vs standard, and extended lymph node resection causes more complications, including death.
3. Choose the surgeon who has done many RC surgeries of the urinary diversion of your choice.
4. If possible, choose the hospital which has implemented Enhanced Recovery After Surgery (ERAS) protocol. ERAS protocol is supposed to help patient recover faster.
5. If possible, choose the hospital which performs many RC surgeries in a year.
6. If eligible, get neoadjuvant chemotherapy treatment. Neoadjuvant chemotherapy can downstage the existing tumor and control microscopic cancer cells which might have escaped from bladder, resulting in improvement in survival rate.
May be other people can add or make correction to the list.
Hi dmoss
There are three UDs, i.e. neobladder (NB), Indiana Pouch (IP), and Ileal Conduit (IC). You can look up IP on Google and Youtube. NB is continent solution. IP and IC are incontinent solution.
Typically, NB, IP and IC are considered in that order for younger patient, whom you are.
IP is to make a pouch internally, and void urine by catheter through stoma 5-6 times a day. There are two urologic surgeons who can do IP in BC,████████████████ and ████████ Each doctor performs IP one or two patients a year. I believe both doctors can do NB also, and IC if it is chosen.
As Marysue mentioned, BCC’s Peer2Peer program has a pool of patients who had gone through different routes, including NB and IP. I am aware of female patients who had NB or IP and happy with the result.
Because your surgery is in January, below two contacts may help you decide NB or IP.
Lidogal ( user name of BCAN) is a female patient who chose NB, She has been hosting NB patients monthly patients meeting by video. The next meeting is Thursday 12/7 at 5 :00 PM Pacific time. She said she is willing to connect to you.
Lidgal’s email address is ████████████████
Susan is a female patient who chose IP. She has been hosting IP patients monthly patients by video. The December meeting was held already and the next meeting is in January. But you can contact her by email and find out about her and other IP patients experience.
Susan’s email address is ████████████████████████
There is NB and IP patients support group meeting in BC. The meeting is hosted by a Ostomy Care Nurse. They usually have a zoom meeting every three months. Below is the contact number.
bcurinarycontinentdiversions@gmail.com
Hope above information will be helpful for you in making UD decision.
Incidentally, were you diagnosed as muscle invasive (MIBC) or non muscle invasive (NMIBC)?
They say Sarcomatoid variant (SV) is a very rare histologic variant of urothelial carcinoma and is estimated to account for 0.1%–0.3% of all urothelial carcinoma of the bladder. Do you know why the urologist recommends immediate cystectomy rather than doing neoadjuvant chemotherapy (NAC) which is usually performed before cystectomy? Also, I wonder if your situation will qualify adjuvant immunotherapy (Nivolumab) which is administered after cystectomy for patients with high risk of recurring.
Joe
Hello Petra, I wish I had some useful advice. I am so very very sorry for what your husband is going through. I had two sets of six BCG treatments, then after a six month wait for my bladder to calm down I had three more BCG installations at which point my symptoms exactly matched your husband’s. My bladder was so horribly inflamed it was over six months before my oncologist could go in there even to do a cystoscopy. I spent a year in agony after those last three BCGs in September 2021. I had been given OxyContin after my one TURBT but didn’t take any because the pain was bearable. I also had a prescription of Percocets for a bad tooth abscess which again I had never taken. After the agony of those last three BCG inductions I tried both opioids and they scarcely touched the pain so I chucked them out. So after a year of pain and the horrible accompanying burning, I can now say that things are starting to improve a lot. I believe it is because someone recently told me to drink A LOT of water, so after a year of agony I started drinking four tall glasses of water in the first hour of waking then just continued multiple glasses every couple of hours and that’s when I started to feel better over time. I had always heard about the importance of drinking lots of fluids but it was only drinking a huge amount consistently that finally really helped. I now have very little pain.
Of course it still hurts when I pee, but much less than before and I still have some urgency so always wear Depends! My reaction to BCG was so bad my oncologist says I can never have it again and possibly not chemo either. I very much want an ileal conduit radical cystectomy. I have CIS tumours which are especially aggressive so I want that friggin’ bladder out! Sorry to be talking so much about myself. Everyone is so different in terms of installation tolerance and the desire for bladder preservation. I guess I am saying your husband is not alone in suffering prolonged severe pain but it will honestly subside. I am also saying I hope you will think about what is right for you and him. I have spoken to many people who have had a rc and they are all glad they did it. (The two people I know who had neo bladders now wish they had had an ileal conduit because neobladders can sometimes be a bit more complicated, sometimes require self-catheretizing and also require you still to get up in the night.) I am also saying that this persistent burning and agonizing pain will subside, honestly! And I guess I am saying it really helps to gather lots of info and talk to a lot of people (BCC can arrange for you to talk to other bladder cancer survivors or if they can’t do it at the moment you can go online to the U.S. BCAN to arrange it for you.) We are all different so find the approach that is best for you. And please, please know that what your husband is going through will not last forever. And please know that you two are not alone. We all understand the pain and fear you are currently experiencing. We all know the importance of advocating for ourselves with our doctors. I am so very sorry for what you both are going through. All of us on this forum know how scary this feels to you and we all want you to know it really will get better. Sending you big hugs and hope. Take care. We’re thinking of you. And while this is meant to be addressed to Petra, Marysue, please know that we are sending you the same love and hope. Our hearts are with you. Always.
In reply to: Pros and cons of Indiana Pouch versus Ilium conduit
I am trying to decide on this same issue. I thought perhaps the Indiana pouch, which is what I told my surgeon. But as I wait the months for the surgery I am wondering whether the Ileal conduit would be better.
XandraXandra
Hi everyone. Since 2005 I’ve had CIS 2-3 times, high grade papillary urothelial cancer once, lots of BCG, keratinizing squamous metaplasia which is a risk for Squamous Cell Carcinama (SCC) and one session of Mitomycin C. I know non-keratinizing squamous metaplasia is relatively common in women in the trigone area. It is unusual to have it in other areas of the bladder. Over the years, it progressed to the keratiniazing form after much BCG. I’ve had differing opinions on what caused it.
I did have a Radical Cytectomy (RC) in 2019 at a larger centre bu a uro-oncologist. The pathology done at that time showed that I had squamous metaplasia in the parts of both ureters which were removed during my Ileal Conduit surgery. I think it was non-keratinizing but I’m not sure. For the first 2 years after that, I had CTs every 6 months. I haven’t had a CT since the enhanced CT done of both my abdomen and pelvis on February 3rd/21. So I think am overdue for one. I did have a CT Urogram on March 15, 2021.
I do have lots of blood work done at least twice a year as I also have Systemic Lupus Erythematosus (SLE). It is stable with no medication. My rheumatologist would like me to be on Plaquenil but I am concerned about it increasing my risk for upper tract cancer. I was on it for a few years. Since my blood work was excellent on a low dose of Plaquenil, when I had a recurrence of bladder cancer, she understand my concern and allowed me to go off it for now.
I’d like to know what the recommended surveillance is in my situation after an RC. Is CT the best way to keep an eye on my upper tract or is there something better? I know cytology is iffy after an RC but is there some way it might be useful for me? I’ve heard of someone who does 3 cytologies, one a week for 3 consecutive weeks, to check on her upper tract.
Some of you may also have SLE and a history of bladder cancer. I’d be interested to know what you’ve learned about taking the medication for SLE while monitoring for recurrent bladder cancer. I appreciate any guidance you might have on anything I’ve asked. I am speaking to my urologist on Sept 6th.
Wishing you all good health.
Brenda
In reply to: Health Insurance
Hi Sweety,
Thank you for joining the forum and sharing your concern/question with us. I live in Ontario, so things are likely not the same as in Saskatchewan. But if I look at Ontario, all the procedures like Cystoscopy, Turbts and bladder removal and divergent installation are covered by the Ontario Health Plan. What is not covered are the supplies depending on if one chooses the Ileal Conduit. I am hoping that one of the members who lives in your province will see your question and respond. I hope my little example helps you a bit.
I’ll ask around and see if anyone in my circle knows about your province and can chime in.
My best,
In reply to: Newbie, recent cystoscopy and TURBT
Hi, Broadmeadow
I had a similar experience as you did that the intravesical chemotherapy was not administered after the initial TURBT. I asked the question to my urologist at a local hospital just before I was wheeled into OR for TURBT. I was told that it had been done before but found to be ineffective. I was not happy with the answer as I already read CUA guidelines which talked about single instillation of chemotherapy after the first TURBT which could reduce recurrence by 10%. 2010 version of CUA guidelines for NMBC already mentioned about it and Section 21. under Single Installation of chemotherapy (SIC ) post TURBT of 2019 version of CUA guidelines strongly recommend (level 1) to have SIC within 24 hours of TURBT for presumed low risk NMIBC at TURBT. Section 22. states SIC is strongly recommended for intermediate risk NMIBC by European Organization for Research and Treatment of Cancer (EORTC) . My tumor was diagnosed as intermediate risk. My local hospital is under Fraser Heath Authority. Urologists who authored CUA guidelines are all affiliated urology department of a university, i.e. UBC in case of British Columbia. Vancouver General Hospital is affiliated with the urology department of UBC, so I assume that those who are treated at VGH will be treated with SIC. I have not figured out if the adherence to CUA guidelines varies according to the health authority or it is up to an individual urologist. When I look at CUA guidelines, authors are all associated with the urology department of some university and has a cancer centre in close proximity. If your tumor was low grade and low risk, though you may experience recurrence, the chance of progression (life threatening) is known to be rare so the treatment is surveillance by scheduled cystoscopy. So, I do not think it makes much difference if you are treated at a local hospital or at a large hospital, but since your tumor was diagnosed as high risk, if there is logistically possible, I would change the hospital to a large hospital. The reason is that you do not worry about if you are being treated at optimum way according to more recent evidence in clinical practice and related researches. Planning ahead, I expect BCG will be the first chose if the tumor is constrained in T1 region in case of high grade, we need to think about what if BCG did not work or experience side effect. What options the urologist has in his or her pocket? For example, if BCG did not work, VGH will likely recommend Gemcitabine + Docetaxel Sequential treatment which is fairly new protocol as BGC+Interferon is no longer available. I do not know if a local hospital will use the same protocol or just specify intravesical chemotherapy by Gemcitabine or Mitomycin alone. If it is decided that it is best to remove the bladder, will a local hospital offer a urinary diversion other than ileal conduit? A case in point, VGH offers neobladder or Indiana pouch urinary diversion where most local hospitals can offer only ileal conduit urinary diversion. I am aware VGH offers Bluelight cystoscopy for high risk NMIBC but my local hospital does not. Olympus and Karl Storz are to main suppliers for cystoscope (rigid or flexible). Many hospitals in Canada have Olympus. Because the way FDA approved bluelight as the combination of Cysview(photosynthesis chemical) by Procure and bluelight cystoscope by Karl Storz, the hospital has to purchase or lease the bluelight cystoscope by Karl Storz, which costs around CDN $150K. Then, procure charges a hospital $1000 for Cysview per administration. In addition, Cysview must be instilled to the bladder and kept for about an hour, then voided. The combination of those requirement makes local hospitals to use Bluelight, Even in the US, there are only about 150 installations, mainly located in populated urban hospitals. Karl Storz came us with flexible cystoscopy and it had been approved by FDA. Interestingly the clinical trial showed 9.1% false positive for bluelight cystoscopy and white light cystoscopy. Still it is known bluelight cystoscopy is a good tool to find CIS which sometimes difficult to identify by white light cystoscopy. At any rate, since your tumor was diagnosed was high risk (T1HG), and a large hospital seems to be accessible for you logistically, may be it is a good timing to consider switching the hospital to the large hospital. best
In reply to: New here – T2 High Grade MIBC
Thank you for sharing. We have a similar journey although I ended up with an ileal conduit rather than neobladder which was the first suggestion. It just couldn’t be done in my situation. But now, “no evidence of disease” which is what we’re all after.
Things are going well! I’m glad to hear you are doing so well!
Paula
Search Results for 'ileal conduit'
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