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New to this and facing RC
This is from a gentleman named Vince who is new to all of this and has questions. He asked me to post this for him as he finds his way around here.
A resection and biopsy 3 months ago showed a couple of tumors, and one was T1 superficial but high grade.cat scans, all tests showed no other cancers we tried BCG, but bleeding returned. Another URO did a “deeper surgery” and this time the biopsy showed muscle invasion. He said the other URO may not have gone deep enough. He said the only option was removal of the bladder. He would send me to USC
1) I asked if we could try intravesical chemo.He said this would not work any comments?
2) I guess there are 2 types of surgery: One is where they leave a hole in the bellybutton, and the other is where you can pee normally. I’ve been in email touch with people who have had this removal. 2 men say they have had no problems with urination, etc after a couple of weeks of wearing a catheter… they had the type where you pee normally. They just have to use Viagra or a pump… but a woman says she has had leakage, has to use tubes, syringes, etc, and that a friend of hers has had 7 surgeries! I don’t know yet which type of surgery she had. So, does it depend on the surgeon? or is it the type of surgery that may make a difference? i read the article where it said there was no real difference in complications between the two. I would prefer the type where you can pee normally
3) i guess they have 2 different surgeries even for a resection.. The second URO aid his was a different kind of surgery than the first, where he went deeper?
4) An oncologist said that UROs cannot take the whole tumor out anyway, since they use a thin needle is that true?
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society8 Replies-
I have an ileal conduit. For 6 months post surgery I had healing problems. My wound would not heal, I went through wound pacs, and other procedures for 4 months, then I underwent a revision which pretty much “trenched” my stomach and removed all the tunnelling that had occurred. Anyway, I am now 10 weeks post-revision and am completely healed.
That being said, if I had chosen a neo bladder I probably would have been in a lot of trouble due to the post op problems I had. One never knows. Now that my wound has healed, my bag appliance stays on with no problems. It is a disability, no doubt, but minor compared to many others. I read an Italian study recently that said people with all 3 options seem to adapt themselves equally to whatever they have chosen.
Best of luck with your choice.
BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008
Wow – all good comments – that’s what I like most – is learning more about how we warriors are handling our new operating systems – we are all so different – we are all so lucky to have something that works for us. I, like Pat, am very alergic to the adhesives…I did not know that until I came out of surgery and we saw the outcome of the bandages…fortunately for me, I found that the expensive dressings that are made in Finland work for me. I have not had to empty from an auto but have practiced just in case to see how my Indy would server me…and I did fine. I carry 4-5 catheters with me to work daily as I tend to consume about 60 oz. during the day but I just put them into a sandwich baggie and toss them in my purse. Thanks all for sharing. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightBali..i sure didn’t want to say anything disparaging about an ileal conduit..i just wanted to let you know that over time that carrying a couple of caths is no big deal…and hey i emptied into a mayo jar in traffic on the way home from Cleveland while stuck in traffic…we all learn the tricks of the trade!!!
I understand we don’t all have choices in the matter.
Pat
I did not choose the illeal conduit. It was chosen for me since I had colitis and they could not use my colon for a neo or IP. At first I was disappointed but I wanted to point out that there are advantages and disadvantages to all diversions. As RAH said, most people seem very satisfied with whatever they end up with. I think that says something about us survivors. We are adaptable and positive and we seem to make the most of what life throws at us. My friend has a colon bag and she too is allergic to latex but they do have adhesives for that problem. I saw her skin around her stoma once and it was horrible-looked like raw meat but once she got the proper appliance, she doesn’t have that problem. Just research and get the right one for you and if you don’t have a choice like me, you will make the best of it.
Balihigh
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduitJust a reply to having to carry around catheters…..i like carry 2 and my pouch is so well trained i rarely have to empty when i’m out. I’m also super allergic to any latex or anything affixed to my body..including the non latex bandaids i use over my stoma…I would never have been able to affix a bag to my body ..it would have been a nightmare for me. The temporary bag i had to wear while the bladder was healing was a pain for all involved..the poor stoma nurses were pouring powders and whatever they could under it…..yikes.
Pat
I too have the illeal conduit and am very happy with it. I agree with RAH but have a couple of other advantages to add to his. With the bag, you can empty just about anywhere. My husband and I do a lot of hiking and outdoor activities. I would not like to carry around the catheters needed with the Indiana pouch. I even emptied in a NY cab on the way to the doctor’s office into an empty water bottle because we were caught in traffic since it was UN day. The “bag” does not limit my activities at all and sleeping through the night is a big advantage for me.
Many people are completely satisfied with the neobladder and the Indiana pouch and as RAH said, most seem satisfied with whatever diversion they chose. There is no ideal diversion but it is important to know all the advantages and disadvantages so you can make a decision that fits your life style.
By the way, I am a 60 year female and I know men and women are different. My surgery was in Sept. and I was back to doing most everything I wanted to do 6 weeks after surgery. Now I feel 100% and I am amazed. I think I was in fairly good shape for my age. I walked 2 to 3 miles a day and am back to doing that again. In fact I feel better than I did before the surgery. Part of that is emotional I am sure. The anxiety of having cancer and facing surgery can deplete your energy. My path reports were excellent and I feel everything bad is behind me now.
Good Luck,
Balihigh
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
I had an Illeal Conduit, and am happy with it.
There are many of us that have this oldest diversion. There are pros and cons to each diversion. What you will find is that most people are happy with the diversion that they received. Take your time to understand the advantages and disadvantages of each diversion.
Here is my description of the Illeal Conduit.
During surgery, after they remove the bladder, they take a section of the intestine and connect one end to the kidneys by the way of the ureters. Then they connect the other end outside the abdomen (this is called a stormo). The stormo is placed about 5” to the side of the belly button. My stormo sticks out from my abdomen 2 inches. Some doctors only have the stormo stick out a .25”. My doctor told me he has better results with leak prevention and less infection with a longer stormo.
The urine then flows directly from the kidneys through the ureters and out through the stormo. Since there is no reservoir for the urine to collect, there is a need for a bag to collect the urine. An adhesive pouch sticks to the abdomen and around the stormo. A bag connects to the pouch (like a tupperwear lid connects to a bowl). The pouch lasts without leaks for 3 – 9 days (depending on body type).
The convenience of this diversion is that there are very few leaks (once you get a pouch that fits to your body size). Also, I sleep throughout the night without getting up to relieve myself. I connect to a larger night bag that is next to my bed by a 6 foot hose. This allows me to toss and turn during the night.
I can not wear a belt because the stormo is at my belt line. When I wear a belt – standing and sitting sometimes causes the belt to burp the bag from the pouch (tupperwear lid reference of burping). When that happens there is leaking. All I have to do is reconnect the bag to the pouch, but urine already has leaked out by the time I notices the disconnect. So, I wear suspenders instead.Good luck to you. There is a bunch of good information on this site. It helped me to make my decision 1 1/2 years ago.
Take Care
RickWow…lots of questions. Your second Uro is right and how lucky you are to have gotten that second opinion and re-turb. Thats one of the biggest problems with this cancer…uro’s who do not see a lot of bladder cancer sometimes do not get a sufficient sampling into the layer of the muscle for the pathologist to look at..and if margins are left you definately can have reseeding of the original tumor. USC/Norris is a great hospital specializing in bladder cancer….either one of the Dr. Skinners are both in best docs in the USA…and since they see so many bladder cancer patients they also will do nerve sparing surgery if you are a candidate for it..a lot depends on what they see when they get in there.
As for diversions..you can’t compare the male to the female answers. And i don’t care what they write or how hard they want to sell neobladders to women..women do not have the same results. Their urethra is much shorter and ineveitably they will have to cath to get out residual urine and are much more prone to UTI’s than men. The neobladder seems to work out pretty good for the men depending on compliance and age and the skill of the surgeon.
Here is the bio of Eila Skinner at USC/Norris
http://www.doctorsofusc.com/doctor/bio/view/117
And here is Donald Skinner
http://www.doctorsofusc.com/doctor/bio/view/109
As for not being able to take the entire tumor away….not always true..depends on size and location and methods they use. On my Re-turb which was done by a first rate surgeon in NYC he removed all of the residual margins and tumor. An alful lot of results in my opinion is based on the single solitary skill of the surgeon…thats it! They are not created equal.
Most surgeons will not even let a male know there is another option to the neobladder besides the outside ilial conduit. There is also the Indiana Pouch which is what most women choose. Thats what i decided on for my personal reasons. I have a navel stoma which is quite accessable and the pouch lies just behind it. It does not bulge at all and my stomach looks normal believe it or not..All scars are gone. You do have to train it just like the neo but once it gets the idea that its a bladder and not a colon it behaves pretty well. I am over 5 yrs out and only have to cath during the day maybe 4 times and i sleep through the night. The downside is you do have to cath..but insurance will now pay for 200 catheters a month so you do not have to reuse. Medicare sets policy on that and they just made that revision.
You’ve been recommended to an excellent facility and should have a great
outcome. Once its invasive the bladder has to go..don’t mess with it…get it out of there.
There are many men on this site with a neo who are very happy with their choice. Hope Tim and others will chime in………Good luck……..PatSign In to reply.
