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Hi. I am new to this space and new to bladder cancer. I hope this is the right spot to ask this.
I am a 53 year old female in Victoria BC. I was recently diagnosed with a highly aggressive sarcomatoid urithelial carcinoma. The recommended treatment is radical cystectomy ASAP. My surgery is scheduled for Jan 2nd.
I am gutted. This is all happening so fast I can barely wrap my head around it, let alone choose the best type of UD for me.
Initially I thought neobladder since it sounds the most like “normal” but since then I’ve had growing doubts due to stories about ongoing incontinence for women. I still can’t imagine having the IC, but it also seems the most simple? And I just don’t know much about the Indiana Pouch. I’m overwhelmed and finding not much applicable info for women making this decision.
I’d love to hear from any / all female patients re: pros and cons of your UD of choice, why you decided what you did and if you have any regrets or reflections since.
Thanks for any support or help on this journey 🙏🏼💛
Hi dmoss:
Many people, both men and women have been in your situation trying to decide what urinary diversion to get. May I suggest that you join our online Women’s Only Support Group. Our next meeting is this Wednesday December 6th at 7PM Central Time so that would probably 5PM for you if you are in Victoria. You can reach out to my co-facilitator Angela Pelletier at angelap@bladdercancercanada.org and she will send you the zoom link. We have many women who attend each meeting that have had the bladder removal surgery including Angela. She has the outside pouch and manages very well with it. There are women who are part of this group that do have a neobladder and can give you the pros and cons of that option. If you come to the meeting you may be able to get at least some of your questions answered.
Failing that, you can reach out to Bladder Cancer Canada via the toll free number and ask to be connected to a female peer support volunteer that has had the surgery. You can ask to be connected to a volunteer who has had the pouch and another who has had the neobladder.
While I have not had to go this route myself because I was thankfully early stage, I have learned that the biggest part of the decision making process is to learn the pros and cons of each and try to figure out which may work best for you. It is usually a lifestyle choice. The neobladder can be more challenging for women for some reason. The pro side is what you mentioned in that you are more “normal” but you do have to learn how to train your new bladder post op and for some that can take time. For some women the neo doesn’t work as well and they need to self catheterize to empty their bladders. That can be the downside. You also have to get up at night to empty out especially in the beginning. For some continence can be an issue in the beginning. The outside pouch is usually a shorter surgery and may have fewer complications. The trick is getting used to changing the pouch. The majority of women in our group seem to be managing well most of the time. This group is also great for post op recovery and learning tips and tricks. I hope that you will consider joining us.
Best Wishes ((((HUGS))))
Thanks for your response. I already emailed bladder cancer canada yesterday to ask about peer support. I will try to attend an online meeting if I can. I often work evenings so it doesn’t always fit for me.
I know there are many avenues to find out more info but my time is so limited – I feel rushed to make this decision, let alone find a surgeon I am confident is experienced at performing whatever procedure I end up doing. The whole thing is quite overwhelming.
I appreciate you answering
Hi dmoss,
I am a keymaster and moderator of the Forum and wanted to reach out to you. MarySue gives a good suggestion about the Womens’ Support Group, and I would participate if I were you. That said, I am willing to step in and help you find a peer-to-peer Support Volunteer. Jan 2 is not far away.
I am going to private message you via the Forum to get the email address and phone number for you to be contacted at. Also, let me ask you right here and now if you’re ok with being contacted.
Please watch for my private message.
My best,
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
Hi Marysue,
Thank you very much for all the links. I have reached out about the women’s only support group you suggested.
I have been researching the three UD options so I know the basics of what they are, although I’ve not yet actually spoken to anyone with any of them. Not gonna lie, they all sound awful to me at the moment. It’s hard to accept radical cystectomy as the only option, but that is what I’m being told – by my urologist as well as the medical team that reviewed my case.
To answer your questions about chemo or radiation, my urologist explained that research shows the sarcomatoid variant does not respond well to either treatment, so for this rare cancer the recommendation is surgery asap. As for the immunotherpy, I think we talked about it but I honestly can’t remember what he said and I don’t know much about it.
At this point I am trying to focus on wrapping my head around the surgery and making a UD choice. I am especially concerned about the standard cystectomy procedure that damages women’s sexual organs and function. I’ve been reading about nerve-sparing and organ sparing radical cystectomies but can’t seem to find out who is trained in this specialized procedure in Canada. I am already terrified about this whole ordeal but would rather not also be devestated by the loss of my sexual function at age 53.
So, really, I am trying to find anyone who can speak to this particular surgical option (as well as discuss UD choices) or can recommend other experienced Canadian doctors I can contact for consult.
But I also don’t have much time so I’m feeling a bit panicked.
Anyway, long answer, and maybe even misinformed, but it’s all I got atm.
Thank you again for the valuable info and group links. I truly appreciate you taking the time 🙏🏼
All the best
Oops sorry, Joe, my last response was meant for you but I wrote it to Maryjane. I’m still trying to figure out this forum on my phone 🤷♀️
Hi dmoss,
If it is feasible, I would seek a consultation / 2nd opinion with ████████████████████████████████████████ Urology and renounced bladder cancer researcher in addition to clinical work. He would know more about more recent studies of the sarcomatoid variant. Or, have your current urologist to consult ████████
1. It is outdated to say the sarcomatoid variant does not respond well to chemotherapy. Having neoadjuvant chemotherapy (before RC) makes significant differences in reducing cancers and also in survival rate.
Five years ago, ████████ said that the sarcomatoid variant responded to chemotherapy because sarcomatoid is a basal subtype.
Most recently, ████████████████ in Rose Park Cancer Center in New York received an award at 2023 American Society of Clinical Oncology (ASCO) conference for her study.
████████ study found that the administration of neoadjuvant (before RC) chemotherapy in muscle-invasive sarcomatoid bladder cancer was associated with higher rates of downstaging to non-muscle-invasive disease at the time of radical cystectomy and reduced all-cause mortality. Rose Park Cancer Center has changed their treatment protocol for muscle invasive bladder cancer with sarcomatoid to prescribe neoadjuvant chemotherapy from immediate RC.
You can Google search on The Role of Neoadjuvant Chemotherapy on Pathological Stage and Survival in Sarcomatoid Bladder Cancer – ████████.
2. ████████ can answer your questions on UD, especially NB and IP from clinical point of view.
Basal and Luminal subtypes of muscle invasive bladder cancers are explained below.
Basal muscle invasive bladder cancers mainly consist of basal cells. Luminal muscle invasive bladder cancers are mainly umbrella and intermediate cells. Basal cells and luminal cells have distinctive different mutated cancer causing genes. Basal subtype is considered to have worse prognosis than Luminal subtype, but neoadjuvant chemotherapy is found to be effective for basal subtype. Luminal subtype is considered to have better prognosis but does not respond to neoadjuvant chemotherapy. Identifying subtype of bladder cancer help to decide patient should receive neoadjuvant chemotherapy or not.
Hi Joe
I did in fact ask for a consult with ████████ when I was first diagnosed. My surgeon, ████████, is a colleague of ████████. However I am being told ████████ that ████████ is too busy to see me before February, which is too late. My surgery is scheduled for Jan 2nd. I’m not sure how these referrals work, but it does not seem I have any avenue for recourse or opportunity to self-advocate for otherwise. It’s certainly disheartening to feel I have such limited time or options for gathering the most fulsome and current info – especially in light of some of the stats you are sharing.
I will try to take time to look further I to the info you sent.
Thank you for taking the time to write and share your knowledge
Hi dmoss
Don’t worry. We have plenty of time.
First, you may want to send the link to ████████, and let him review it.
The Role of Neoadjuvant Chemotherapy on Pathological Stage and Survival in Sarcomatoid Bladder Cancer – ████████
“www.urotoday.com/video-lectures/asco-gu-2023/video/3208-the-role-of-neoadjuvant-chemotherapy-on-pathological-stage-and-survival-in-sarcomatoid-bladder-cancer-arya-roy.html”
If████████changes his mind and recommends Neoadjuvant chemotherapy, you will buy time as Neoadjuvant chemotherapy treatment will take 3-4 months before RC.
Joe
Hi Joe
I wonder if the difference is that mine is Sarcomatoid Carcinoma and not just the plain old Sarcoma? I don’t know enough about the variants themselves. I know at one point someone suggested asking for a referral to the Sarcoma clinic (in Toronto I think?) but ████████ sufgested it wasn’t an appropriate referral due to my particular presentation which isn’t a true Sarcoma cancer. But honestly I have not had time to delve into any of this as I am too focused on learning about the different UD options.
Feel free to email me directly if it makes more sense for an ongoing conversation. Or not if that doesn’t work for you.
Thank you
Variants are also called urothelial carcinoma with variant differentiation. If entire tissue sample of the tumour which was obtained during TURBT looked sarcomatoid, then it can be called pure sarcomatoid. But, pure sarcomatoid is very rare, i.e. 0.3%. The pathology report from the initial TURBT should state the extent of sarcomatoid differentiation.
According to Cleveland clinic, which is ranked top 6 in cancer centers in the US, sarcomatoid carcinoma is cancer that is a mix of carcinoma and sarcoma cancer types. These tumors can appear throughout the body but most commonly associated with lungs. Classifications like “carcinoma” and “sarcoma” describe the type of tissue in your body where malignant cells (cancer cells) begin forming:
- Carcinoma begins in the tissue that lines your organs or skin. This tissue is called epithelial tissue because it’s made of epithelial cells. Most cancers are carcinoma.
- Sarcoma begins in bone, connective tissue and soft tissue. Sarcoma is made of mesenchymal cells, the building blocks of nerves, muscle, fat, etc. Sarcoma is less common than carcinoma.
With sarcomatoid carcinoma, tumors form that contain cells and tissue found in both carcinoma and sarcoma.
In addition to sarcomatoid carcinoma (SaC), there is another variant carcinosarcoma (CS). According to the clinical study published in 2007, which was co-authored ████████, SaC and CS are different in many ways. CS has worse prognosis than SaC. The study also mentions that the use of chemotherapy were not available, and the lack of data on chemotherapy prevents the analysis of this mode of therapy, which is particularly relevant
for the treatment of patients with bladder cancer who are at high risk. In this sense, ████████ study (2023) was based upon National Cancer Data Base (NCDB), which had information if SaC patients (570) received neoajuvant chemotherapy (NAC) or not, and was able analyzed the effectiveness of NAC vs no NAC. 40% of NAC had pathological downgrading vs 6% of no NAC, and the median overall survival (OS) was 40 months with NAC vs 20 months without NAC. This is why this study was significant ands awarded a GU ASCO 2023 Merit Award. This information might not have been available to e████████ at the time he mentioned that neoadjuvant chemotherapy was not effective to SaC. So, it is very important that ████████reviews the article asap.In term of UD, as far as I know ████████ and ████████ in ████████ are only two surgeons who had training on IP. This is likely ████████ could not give ████████████████████████.
Anyway, the review of ████████████████████████ is the most important at this moment.
I use the forum as other participants can make correction or suggestion, but if email is found to be more efficient, email is fine with me.
Joe
Hi dmoss
Don’t worry. We have plenty of time.
First, you may want to send the link to ████████, and let him review it.
The Role of Neoadjuvant Chemotherapy on Pathological Stage and Survival in Sarcomatoid Bladder Cancer – Arya Roy
If ████████ changes his mind and recommends Neoadjuvant chemotherapy, you will buy time as Neoadjuvant chemotherapy treatment will take 3-4 months before RC.
Joe
Hi, I know your surgery is soon, but I wanted to respond. I am a 51 yr old female. I have had a neobladder since June 2020. I was worried about incontinence or hypercontinence too. As it turns out, I am neither hyer or incontinent. I have a little bit of hypercontinence if anything. My neobladder functions very much like my old bladder. I even have sensation that tells me that I have to go. I am still catheterizing twice a day because I don’t empty my bladder fully when I go and there is still mucous. Honestly, the catheterization doesn’t bother me at all. I can donit over the toilet easily. It actually gives me good relief. If you want to talk, feel free to reach out.
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