I personally have only just read your post for the first time, and I also notice that you're on-line right now. I was hoping you'd give us an update on your situation, if you're willing. I hope everything has gone well for you since your last post on this site.
From what I understand there are several reason you can be refused a neobladder and/or pouch;
1. If the cancer has metastisized outside of the bladder
2. When cancer is found in the trigonum and/or urethra
3. If your health/age will not allow the long operation (i.e heart failure risk);
4. If they feel you won't/can't maintain the bladder
5. Prior radiation therapy can damage the intestinal material used to fabricate the neobladder/pouch, thus some who opt for bladder sparing can not fall back on neobladders.
6. Insurance coverage.
Maybe someone else can elaborate further, this is just off the top of my head.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA
Do you know of any instances where a pouch or neobladder was refused? and, if so, the reason? I have an appointment with a specialist this week and am so much hoping he will accept me as a patient for this procedure.
Whoaa!!! Slow down. This is not a simple appendectomy. You should get a second, even third, opinion before doing anything rash. If you do need to have your bladder removed, you want a urological surgeon with a LOT of experience with genitourinary cancer surgery and bladder removal in particular. These are complex procedures. When done by the experienced uro/surgeons, the operating time between the 3 types of procedures is not significant. If you go to the section on urinary diversions, you'll find info on the 3 different options. Email direct if you can't find it, and I'll send it on to you. Also check Tales From the Trenches (Ben Olsen is my husband).
In the meantime - some general info on bladder cancer:
Approximately 50,000 new cases of bladder cancer will be diagnosed this year, 14,000 will require radical cystectomy (RC) and urinary diversion. Bladder cancer is not a death sentence. When diagnosed early and treated appropriately, the long-term prognosis for bladder cancer patients is very good. It is imperative to learn as much as possible about the disease and treatment options. The p53 & P21gene tests, developed at the USC/Kenneth Norris Comprehensive Cancer Center, Los Angeles, are used to evaluate tumors to help determine likelihood of tumor recurrence and treatment options (they are available at USC/Norris and a few other places). Also, Matritech's NMP22 test, FISH and BTA Marker tests are used for tumor evaluation. Accurate diagnosis and treatment are critical at all stages.
It is important to find a urological surgeon and a pathologist who have both the skill and a LOT of experience to determine the most accurate diagnosis and best treatment. Since most urologists & pathologists see very few cases of bladder cancer, one usually has to go to one of the comprehensive cancer centers for the best treatment. In many cases, patients can be successfully treated with careful monitoring - a minimum of cystoscopy every 3 months and annual IVP, CT scan, TUR. Some may also require BCG and/or one or more of the chemo programs. Others will require radical cystectomy, a major surgical procedure. A very small number of patients who meet strict criteria may qualify for bladder-sparing treatment. This involves a combination of chemo and radiation. Patients who qualify for bladder-sparing treatment should be aware they may be limited to an ileal conduit with an external bag (instead of one of the continent internal pouches) if radical cystectomy is ultimately needed. In all cases, the skill and experience of the surgeon are critical and should not be underestimated. Typically, if the cancer is invasive AND confined to the bladder, RC and a meticulous lymph node dissection can be completed BEFORE chemo is considered. In many cases chemo is not necessary. There are a few options for chemo, which are usually determined by the patient's diagnosis and/or the doctor's preference. Radiation therapy should be avoided if possible, because it can cause irreversible scarring and damage the entire intestinal area.
For cases requiring bladder removal, the standard ileal loop urinary diversion and a variety of internal continent pouches are available. The ileal loop has an abdominal stoma and requires an external collection bag. It also requires "hooking up" to a night drain when lying down for more than a few hours. Some of the internal continent pouches have an abdominal stoma, and they are drained through a catheter 4 - 7 times/day (easy, painless and simple). They are easy to manage and do not require an external bag. In many cases, the internal pouch can be reconnected to the urethra to allow for normal urination. This procedure frequently requires a period of training before continence is achieved, and some people never achieve 100% continence. In some cases, nerve-sparing surgery can be done to help maintain potency for males. If not, there are a few good alternatives to impotence. Email for info.
Bladder cancer is a nasty, insidious and frightening disease. Although many people are successfully treated with regular Cysto checkups, TUR, BCG, BCG and Interferon and/or other chemo drugs, and/or RC, far too many are not as fortunate. They later find their bladder cancer has spread out of the bladder (metastasized). Some of these metastases may have been avoided with accurate pathological staging and grading of tumors. Even patients who undergo successful RC need to have regular checkups.
The three most common types of bladder cancer may be found separately or in combination. All three can develop from "superficial" to deeply "invasive" tumors. Superficial means on or near the surface - it does NOT mean trivial or insignificant. Deeper tumors are called invasive. Papillary tumors stick out into the bladder like a mushroom and can also send shoots down into (and through) the bladder lining. Sessile tumors are small surface craters and also send roots down into (and through) the bladder lining. Cancer in situ, CIS, is microscopic spots on the bladder lining. Unfortunately, staging and grading tumors is not an exact procedure. It is often difficult to obtain the complete outer edges of tumor tissue, including areas of CIS. If the O - D staging method is used, O & A are superficial, and B, C, D are invasive. Grading is determined by how much the cell structure differs from a normal cell. If the I - IV staging method is used, III & IV are the most threatening and require aggressive treatment.
The occurrence of any type of bladder cancer indicates the bladder tissue is unstable and highly susceptible to malignant growth. Transurethral (TUR) surgery and pathological staging and grading can neither guarantee the cancer has been cured nor that tumor will not recur. The hard truth of the matter is that bladder tumors have a 50 - 70% recurrence rate with no set pattern or predictability, and recurrence may be a more invasive type of cancer. Accurate pathological diagnosis and appropriate treatment are critical in all phases of bladder cancer treatment.
Check your library for a copy of Dr. Mark Schoenberg’s excellent book, “A Guide to Living With Bladder Cancer” which has good information on everything, including chemo. It is also available at most bookstores and at Amazon.com, Barnes&Noble, etc. – about $16.00 US.
Also, happy to answer questions e-mail or phone, but there is a lot of ground to cover.
(I am not a medical professional - just a graduate of "trial by fire" as my husband successfully battled bladder cancer 20+ years ago and a LOT of research).
I was recently diagnosed in march 2006. I had tumor removed in mid march and went through six weeks of bcg therapy. I had a cystoscope done last week and they found 2 new spots. they will biopsy the new spots 7/5/06. If cancerous, I will be sent to Indianapolis for the neobladder operation. [smiley=undecided.gif] is there anyone who has been to indiana university medical center for this procedure. please respond with your opinion and story about this surgery. My wife and I are considering basic bladder removal in the interest of saving time. We could probably have basic removal done a bit faster and locally. I am only 55 years old and am in fairly decent shape. Any opinions on my case woulkd be appreciated [smiley=grin.gif]
Thanks for thr reply.
It's been a scary couple of days for me and the family.
Mostly due to not getting the 2nd biopys results.
Alot of stuff runs through the mind as I would think all here have gone through.
You have given me some hope.
Good luck to you too!