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Renee..where have you gotten your 3 opinions? The single most important decision you can make is in your surgeon. High rates of complication at a major cancer or university center not always the case. Where are you located?
I'm 7 l/2 yrs out from cystectomy with an Indiana Pouch and completely continent.
pat

Thank you so much for commenting. My urologist that did my TUR sent me for a 2nd opinion with a urologist at Washington Hospital Center (in D.C.). I really wanted another opinion, so I found a wonderful urologist at John's Hopkins in Baltimore. I've decided to have surgery and am hoping he can do a neobladder. So happy to hear that your have done well with the Indiana Pouch. It's always great to hear positive outcomes from the surgeries.

You've got the #1 Urology center in the US at Hopkins...excellent choice. Dr. Schoenberg was a tremendous help to me when i was researching diversions. He prefers the neobladder as do most of them. Outcomes are not as great with females with the neo as we have a shorter urethra...you will have to cath at some point. Just do your research and make sure you are comfortable with your choice. here's a link to continence rates just written in urotoday
http://www.bladdercancersuppor...1857#31857
Picking your surgeon is so important as to outcome..you've done a good job.
pat

Dr. Schoenberg is my doctor. We feel like we've found the best doctor and facility. Thank you for reconfirming this. I've tried to research all options and outcomes, but will continue to find out as much info as I can. Thanks for the link.

I may be too laste to chime in here. I was a healthy non-smoking 51 year old female when I was diagnosed with a large upper tract kidney tumor in 2007. I had nephrouterectomy surgery soon thereafter; the pathology results were a 6 cm high grade, transitional cell cancer in the kidney that had spread into the connecting ureter. I did not have recurrence until a year later, in the bladder. After three recurrences in the bladder and subsequent suregeries (3 months apart) for high grade superficial papillary tumors, I sought a second opinion at a major cancer center (MD Anderson in Houston); they asked why I had not tried the BCG instillation therapy, a question I had been asking my local Uro surgeon. I came home and and convinced my local surgeon to start the instillation therapy; he opted for a mixture of BCG and Interferon. I had the 6-week induction course, followed by one course per month for 3 months, and now one course every 3 months for the past year plus. It has worked well for me with minimal side effects, although I admit the discomfort has increased over time. I decided that cystectomy surgery, the recovery, side effects and outcomes were to be avoided if at all possible - time will tell if this is a long term solution, but I'm glad I tried BCG and am pleased with the results. I've cancer-free as far as I know for 1 year, 8 months. Best of luck to you in your decision-making.

I have had BCG for low grade recurrent bladder tumor and was pleased with the result. However-for an aggressive tumor, judging from previous posts from other cancer survivors I would definitely consider the cystectomy if you can afford to. As you note, BCG is not a guarantee and being a mom also (my husband passed away from colorectal cancer when my twins were 14) I would say the added inconvenience is worth the assurance that cancer would not return.. Good luck, and God bless you and your family.

I have the same problem. Diagnoised June 9,2010 and having the neobladder 9-12-2010. So unsure of what to do. Please let me know if you find anything positive to help me with a decision
Good luck and long life to you my friend.

There are so many variables with T2G3 bladder cancer and at a high volume cancer or university center and uro/surgeon who deals primarily with bladder cancer will have the pathologists to determine the aggresiveness of the cancer. BeBe if you're in need of a second opinion and need a recommendation i can help you there. Choosing your surgeon is the most important thing you can do for yourself. Research the three diversions. Decide which one for whatever reason you can live with. The doctor should not make that decision for you. If he can only do the Neobladder or Ileal conduit and you want an Indiana Pouch you need to find someone else. I'm personally a very happy camper with my Indiana. I only cath 4 times a day which is less than my trips to the bathroom prior and i sleep through the night. But its a very individual decision and its yours to make. But you will get used to the new diversion whatever you choose.

Sorry meant to say T1G3...

I was just diagnosed in July and am reeling. My first turb was performed by a respected uro at a local teaching hospital. He was certain that it was pappillary stage o and didn't resect to the muscle. When the path report came back with a T1 high grade, I decided to find a doctor who specializes in bladder cancer.

So with Cat scan CD and path slide in hand, I took the el across town to another teaching institution where they have a Uro/surgeon who specializes in bladder cancer. He performed a 2nd turb less than 2 weeks later, and found no muscle involvement. He has me starting a 6 week round of BCG in 2 weeks. He pulled no punches that the thing is high grade and is agressive, but he is also aggressive about follow-up and bladder removal if cancer returns.

At first I felt relief but now am very concerned by everything I am reading on boards about appears to be the putative uselessness of BCG once the cancer is in the lamina propria - including the risk of cancer spreading to other organs, etc.

Is there any good news to report about people with T1 high grade who respond well to BCG? Or is just delaying the inevitable -- and risking spread of cancer to other organs?

Sorry if this letter is a "downer" but I'm trying to work through this. I should have probably discussed these concerns with my new doctor -- but they've come about gradually and the more I learn the more questions seem to arise.

Thank you in advance for your kindness, understanding, and generosity. I hope to one day be in the position to return the favor.

Well sort of...40% fail which means 60% respond but it is an ever vigilant watch. I personally would not mess with it if it recurs once...here's a good paper on it written by a very respected cancer surgeon Dr. Jewitt out of Toronto
http://www.ncbi.nlm.nih.gov/pm...MC2792453/
I can site others but he says it very well.
I noticed you said you took the El..Chicago maybe? Now i'm curious if you're at the U. of Chicago with Dr.Steinberg?...
There are so many variables with this cancer..different markers..and a top center is going to check for all of those.
And you're doing absolutely the right thing by working through this. We all had to do it..its daunting. This web site has some excellent stats and research.
just know that losing the bladder is only traumatic at first...i actually like my new one where it is...i laugh when the commercials come on for OAB..don't have that for sure!! But i do have an Indiana which has worked great for me. Let me know if i can guide you in any other way.
pat

Thank you so much, Patricia. Yes I am with Dr. Steinberg. I do have faith in his judgement and am grateful to have found him - that he took my case so quickly. He is up-front and direct about his strategy in dealing with this illness.

It was so frightening at first to hear about having my bladder removed as a possible remedy to this.

I am less intimidated now having had an opportunity to read about others experiences (such as yours). Thank you for sharing your insights and your prompt feedback. I will definitely read your link. And thank you for taking the time to write. I really do appreciate it...

He's a top man in the field and well respected by other uro's...good choice. He doesn't mince words and thats what you want. He's actually on our advisory board over at a sister site of this..The American Bladder Cancer Society..you might want to post over there..larger audience
and Cynthia who is the Head of the site had her Indiana done by Dr. Steinberg...read Cynthias Corner here on this site.
www.bladdercancersupport.org/
It is weird how we think of our bladders..i mean we'll take anything else off our bodies without a second thought if it will rid us of cancer but the bladder?? It just sounds too confusing to contemplate but even tho the surgery is not a picnic the body is amazingly resiliant and will adapt.
By the way ..born and raised in Chicago..and used to sneak downtown on the El all the time by myself as a young girl skipping school. I thought i owned the town!!!
pat

I'm glad to hear the excellent views about Dr. Steinberg. I will definitely check out Cynthia's Corner. Chicago is a great town - and I am never disappointed by the "theater of the el"....if the view from the ride isn't a feast for the eyes, there is usually some drama going on inside the car....plus it gets you where you need to go without having to navigate the street traffic.

Thanks again, Patricia, you have been enormously helpful.

Hello,

I was diagnosed with bladder cancer in late June and I am scheduled for a cystectomy on September 20 at Johns Hopkins with Dr. Schoenberg. I was diagnosed in 1999 with bladder cancer, and Dr. Schoenberg removed the tumor and part of my bladder. So, I have had 11 years to think about the cystectomy. Even with all of that time, I am not sure whether to get the ileal conduit or the neo-bladder. I was pretty sure I had made up my mind and was going to go with the ileal conduit. My question is how difficult is it to learn to catheterize yourself? Is it painful at first? Does it keep you from normal activities? How did you decide which surgery was best for you?

Hi Claire...well you've got another top uro in the field of bladder cancer. I remember talking to him when i was first diagnosed and he was most helpful..i don't believe he does the Indiana or maybe chooses not to...but that was my choice and he actually gave me names of surgeons that do specialize in the Indiana Pouch. I thought that was very gracious of him. Its so difficult because you really do want everything to be back to normal...but the problem with the neo with women and a lot of men i might add is you will indeed have to cath. Women have a shorter urethra than men and its difficult to keep it in...we either become hypercontinent or hypocontinent. Since with the neobladder you still have your own urethra try seeing if you can stand to catherize yourself before the surgery...or how have you felt after TURB's with a cath in? Some women don't feel a thing....I must have the most sensitive urethra in the world as i could not stand the catheter..we're built a bit different and all those sensations in the urethra just about drove me up a wall...now mind you this was my experience. I didn't want to mess with the ileal conduit as it does not have a valve to prevent back up into the kidney. With the Indiana the urethra is removed and my stoma is actually right where my navel was and is very easy to get to. I had to train it but you have to train the neo also. I honestly love it. I don't leak..I've never had a UTI..and i only have to empty 4 times a day and i sleep all night...and i do watch my intake of fluids in the evening. The pouch is right behind the navel and is not the least bit visible..my stomach is flat.
I know it all sounds so scary doesn't it. I'd ask Dr. Schoenberg if there have been any advances with females and the neo..i'm not so sure they really follow up too well or when they do i think users don't exactly tell the whole truth..especially the guys! (sorry guys)
Whatever you decide you will learn to live with and it won't keep you from doing anything unless you lift 1000lbs weights for a living.
Is Dr. Shoenberg against the Indiana or did it just not come up in conversation?
by the way i'm going on 8 yrs with my Indiana.
I hope i havent confused you.
pat

oops...when i said keep it in..i meant the urine not the catheter...must learn to proof read
pat

Claire - I had my cystectomy on 6/7/10 by Dr. Schoenberg and opted for the neobladder. It was a very difficult decision, but it was what I felt was right for me. Once you make your decision, be prepared to choose your 2nd and 3rd options in case your 1st option isn't possible. I ended up being in the hospital for 16 days due to some complications (blood transfusion, kidney infection, small bowel obstruction, NG tube for persistent vomiting, PICC line put in because I couldn't eat and incision infection). Dr. Schoenberg told me I made a left turn instead of a right. I wasn't the typical patient, but be prepared that you might be in the hospital longer than expected. I've also had a rough recovery. After I got home, I developed C. Diff (a horrible intestinal infection from antibiotics) and was hospitalized. I'm still battling with it. 2 1/2 weeks after that I was hospitalized for a urinary tract infection and 2 1/2 weeks after that (while on vacation at the beach) I was hospitalized for sepsis. My recovery hasn't been the typical recovery, but I think it's important to know that things can happen. The good news is that my neobladder started working as soon as they removed the foley cath (3 1/2 weeks after surgery). I only had to cath twice a day, which I didn't mind. Dr. Schoenberg likes you to try to empty your bladder at least every 4 hours (which I do more often). I have to set my alarm during the night, but I'm getting used to it. He said in 6 months I can probably empty it every 6 hours. As far as training the bladder, he said it can not be trained because it is "a thing" - totally different from our real bladder. I had a follow up appointment with Dr. Schoenberg several days ago and he said I no longer have to cath since I'm emptying my bladder so well (they did a bladder scan to check this). That was a good feeling to feel as though I'm making progress. I hope you are able to make a decision soon. When I agonized over the decision, Dr. Schoenberg told me to make my decision and don't look back. I took his advice. Good luck to you.

Renee

Hello, my mom (age 60) was recently diagnosed with high grade papillary urothelial carcinoma with multifocal invasion into the lamina propria. She is currently undergoing BCG therapy, but we are seeking a 2nd opinion at USC with Dr. Schuckman next week. It appears that USC has new technology where most surgeries are non-invasive, even cystectomy. My friend's uncle is a former patient of Dr. Schuckman and has been cancer free for over 2 years now. Have any of you heard good/bad things about USC? Renee, I'm curious how you are feeling. My best to you all.

Edith

I've still been having recurrent UTI's and ending up in the ER about every 2 - 2 1/2 weeks after I finish my antibiotic. As soon as I get to feeling better, I get sick again. Unfortunately, no one can figure out why. I'm seeing an infectious disease doctor at John's Hopkins in a few weeks to get his input. Hopefully he will have some answers. Best of luck to your Mom. I've never heard of that new technology.

Edith,
USC/Norris is kind of the birthplace of cystectomy and thier doctors are all pretty fabulous. My doctor, Dr. Inderbir Gill is now head of the dept of urology(took over for Dr. Skinner) there and the top laparascopic surgeon in the country. He did my Indiana Pouch 8 years ago laparascopically when he was head of Uro at Cleveland Clinic and head of the Transplant Division. He's been doing laparascopic for a long time and is a master of it. So you are in good hands at USC as they are competent at doing all 3 diversions and they are female friendly.
Sorry about your infections Renee ..it is kind of puzzling since they determined you are emptying your bladder as most of these UTI's are caused by back up of urine to the kidney. Hope the infectious disease doc has an answer...........
pat

Renee and Pat,

Thank you for your response. We meet with my mom's doctor tomorrow. I'll post again when I know more.

Renee, I really hope you start feeling better soon.

-Edith

My 88 yr. old mother has had urinary problems for over a year. We thought it was related to another problem. She urinates all the time, wets herself and can often be found standing in urine and she does not know she has gone....has no feeling in this area. The doctor told us he suspects bldder cancer. She will have a biopsy in a 2 weeks. With everything that is going on in this area, we have also noticed swelling in the ankles. Could this also be related to what we feel is going to be a diagnosis of bladder cancer?

William,
what has them thinking bladder cancer? Has there been blood in the urine?
Many older people lose sensation in their urethra due to the detrusor muscle, prolapse, and other problems. You mentioned another problem ..may i ask what that was? There are lots of tests for this. The edema in her ankles may or may not be related..here is an article on edema in the elderly.
http://www.buzzle.com/articles...derly.html
Has she had a cystoscopy yet or are they going straight to the biopsy?
Where are you located?
pat

Renee and Pat, We are USC Norris today for my mom's bladder replacement. It became obvious in her doctor's visit that she would have no other choice because they found tumor fragments and a tumor still growing in her bladder. In addition, her ureter was sealed, which seemed to indicate to the doctor that the staging of my mom's cancer may have been incorrect. Needless to say, here we are waiting and stressed, but I believe today is my moms first day of healing. She was in good spirits this morning, is incredibly strong and stubborn and will beat this thing. I hope to be able to post a positive message in the near future.

Thank you for telling your private stories. Knowing there are successes out there is so helpful.

-Edith

Well Edith i'm sure she is out of surgery by now and i hope with a great prognosis. I know you still have to wait on pathology but your mom is young and she sounds like a fighter to me. Let us know how everything is going.
About the understaging..Dr. Herr at Memorial Sloan in NYC estimates at his center 75% are understaged. Whew! Thats a lot of mistakes isn't it. We need to do what they do now with breast cancer..its automatic that they send the specimen to the top pathologist in the country for confirmation. Sure makes a lot of sense to me.
pat

Hi Pat, yes, my mom is done with the surgery and THANK GOODNESS it all worked out. She was able to get the neobladder. Her major setback was her blood pressure dipping, so they had to stop her epidural which was giving her pain control. It cost an extra night in the ICU, but they managed to get her pain under control. Luckily, she doesn't remember much of her first night.

Her second setback came today when a stool sample came back positive for CDIF, a bowel infection. She will not be released until it clears. She's not eating much at all, but I guess this is to be expected. We all thought this wouldn't be an issue because she's never lost her appetite before.

We are eager to get the "all clear" on the biopsy of her lymph nodes.

Her mood is pretty somber. She's stoic and sort of uninterested. Any suggestions? My sister and I are by her side as much as possible, which helps.

Thanks for your reply, Pat.

Best wishes,

Edith

just a question..how did they do a neobladder if her ureter was sealed?
sorry to hear about the C-diff..seems to happen a lot in hospitals. Hopefully they will get it under control. She will need the hydration. Its not unusual to not have much of an appetite after this surgery. In fact some of the meds produce a metalic taste in the mouth and all foods taste like that. I had it also. About the only thing i loved was a Starbucks Venti Mocha..there was a Starbucks in the hospital..so my husband would bring them to me. I also asked for peanut butter and crackers and i ate a banana a day. The bowels are still healing and really get angry with large meals at first..it just takes a while. I lost 20lbs that i didn't have to lose. Small meals when i got home. I made sure i ate eggs at some point ..a complete meal and full of protein..whether they were hard boiled or egg salad or scrambled. Noodles...soups with very soft veggies...and smoothies in whatever tastes good for mom. I still have problems with meat..difficult to digest...chicken is ok but my portions are small as with fish. So don't worry about the small appetite...just cater to her whims and smaller portions. The stoic and uninterested might just be the drugs talking and not her. Once they wean her down she'll be back to her old self and not remember much of anything. I actually became a Jeckyl/Hyde character with whatever they were giving me...so get them to wean her gently off the hard stuff..keep her walking.
Oh..forgot the hot fudge sundaes...that perked me up!!
you're good sisters...i don't know what i would have done without my husband there.
pat

Edith - glad to year your Mom was able to get a neobladder and praying that her biopsies came back negative. I also had C.Diff, but wasn't diagnosed until I got home from the hospital. I had NO appetite at all, which was unusual for me too. I lived on chicken noodle soup and baked potatoes for a while until my appetite slowly came back. I tried to eat eggs as often as I could for protein. I lost 25 lbs, but am slowly gaining a few pounds back. I was pretty stoic for a while too. I think it was a combination of not feeling good and all the unknowns that lied ahead. With the help of family and friends, they pulled me through. Unfortunately, I'm still dealing with the recurrent UTI's. This is my 6th infection since my surgery in June. I saw an infectious doctor and he wants my urologist to do a cystoscopy to make sure there isn't something anatomically wrong. Hopefully I will be having that done within a week or so. Best of luck to your Mom.
Renee

wow Renee..talk about passing the buck..i wouldn't have expected this of Hopkins at all. Have they cultured whats causing this? They lost one of their good guys Dr. DAvid Chan to Long Island. I hope they can figure it out and get you on something long term ...but they have to identify it first.
pat