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My Mom is having her bladder removed on 8/30/10
Hello, My Mom is scheduled to have her bladder removed on Aug. 30th. She is an active 75 year old who still works and is in a bowling league twice a week. Please forgive me if I do not use the correct terminology here, I am new to this and have never participated in a blog or forum. My Mom is all doom and gloom. I am thinking positive and that she will be fine. Next week she will be meeting with a surgeon to mark the spot where the tube will be placed in her abdomen (where the bag will be attached). It would seem to me that there is probably a place that is more comfortable for this tube to be placed. Perhaps more towards the right side (since she is left handed) so that when she can bowl again it won’t interfere with her bowling??? I don’t know. I just want to make sure that she is as informed as possible, this small detail may come back to haunt her later. Or where the tube is placed may make her able to wear her favorite slacks that she know feels she won’t ever be able to wear again. Any suggestions? Thank you.
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14 Replies
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Sheri,
Hope you checked out the thread by Abby, entitled “Faith”; she is in her early 70’s and just got the ileal and seems to be doing very well and is active…she also had a good recovery following the RC. And then of course, you have heard from Rick…he is very active and the diversion doesn’t seem to slow him down much. I think the real key, whether she gets an Indy or the Ileal is to find a very qualified doctor and then have good follow up care with a good stoma nurse. If you want to know more about the Indy Pouch, you can click on the link below my name which covers my experience.
P.S. Don’t let those doctors rush her into an appt. if she isn’t comfortable with his credentials or the diversion; she needs to feel as secure as she can about the decision before going into OR. May God bless you and your mom that you will make the best and right decision for her.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightOOPS..it appears i’m the one with declining mental capacity..time for my B12…didn’t i just get one? Sorry Sheri got your mom mixed up with 90yr old Mom posted somewhere..heck i can’t remember?? :blush: :S
Anyway those are 2 good vitamins to have checked along with other blood work being done. Always nice to know what the baseline is.
Pat
Thank you all for the wonderful advice. I appreciate your help and support more than words can express.
Sheri
I didn’t see where it was said that Sheri’s mom is experiencing dementia. Thank you Pat for reminding us that indeed deficiencies like B12 can be confused with signs of dementia.
Also Sheri, if this is something new (dementia) – depression can also make a person forgetful, disoriented, etc. Certainly the situation that your mom is facing brings with it a slew of emotional issues that can easily result in depression.
Gracie
Hi Gracie…i think it was Dr. Josephson at City of Hope or Dr. Chan
http://www.cityofhope.org/directory/people/josephson-david/Pages/default.aspx
over to the right of the page you can click on their biography.
http://www.cityofhope.org/directory/people/chan-kevin/Pages/default.aspx
But notice where they got their training…USC/Norris…that tells you something.
pat
And Sheri..if Mom is actually experiencing some dementia and its not a Vitamin Bl2 or D deficiency..do have her tested…then the ileal conduit is the best choice as the patient must be compliant and if she can’t remember to empty it could be a disaster. Having the exterior bag at least someone would be able to care for her should the need arise.
pat
Hello Sheri,
I know this is a difficult time for you and your mom. However, I feel compelled to also encourage you to seek another opinion.
I realize that your mom is in the Kaiser system. Generally speaking, I am not a fan of Kaiser. They just do not have the best reputation in my opinion. (look at the disaster of their kidney transplant unit). They may not even know the options available. Just because a doctor has a good personality does not make him a good surgeon.
Your mom may not be getting the right information on the options available to her. There is such limited information out there that going to a cancer center with doctors skilled in this area is imperative. Pat gave you doctor information @ UC Norris and there is also City of Hope in southern CA. (Pat, do you remember the name of the doctor there?)
I had a cystectomy at UCSF and chose the Indiana pouch. This is a viable option in many cases.
I know there is a insurance question but I would think that a case could be made to Kaiser that this is specialized surgery that they may not trained in adequately .
I know this is a lot to handle. But as I have said before, the choice of who the surgeon is going to be will be the most important decision your mom will make.
I wish you and your mom the very best.
Gracie
Thank you. This is what I really needed to hear.
Sherii was having a problem posting earlier…my posts just went to a white page but i was able to send a PM to Sheri…what i mentioned was Pudendal nerve entrapment which can produce those symptoms and as i explained it may not be that but something to consider.
I’m a bit scared of the Kaiser system..i don’t think they give you many choices….but the best in California is at USC/Norris in L.A…..you can pick any of them…they’re all great..Dr. Indebir Gill, Dr. Sia Daneshmand, Eila Skinner(female)..
Dr. Gill
http://www.doctorsofusc.com/doctor/bio/view/110738
Pat
Sheri,
I am a male that has an Illeal Conduit. It is a piece of intestine that sticks out the side of the abdomen and then a adhesive pouch goes over the stormo with a collection bag attached to the pouch. I am 51 years old and am very active. Neither the pouch nor the bag prevents me from running, playing tennis or golf. If I was to bowl, I doubt if the location of the bag would be a problem if it was on the right side for a left hander bowler. When I went in for my diversion, they placed the blue dot in the best location that would be best for solid seal while sitting or bending. The pouch also needed to be clear of my belly button.
If your mom needs this type of diversion, it really doesn’t prevent her from doing those activities she did before.Keep being the positive influence to your mom.
Rick
Sheri, wishing you and your mom the best! As for the vaginal/rectal issues, I had that and it seemed to be caused by my bladder cancer. When I was diagnosed with CIS, my urologist said that this could explain all my symptoms. When I was recovered from my first BCG series, those symptoms were GONE.
Don’t know what Pat may have explained, but I understand that sometimes pain/discomfort is NOT where the problem is…but is sort of “reflected” from elsewhere. I wouldn’t be surprised if your mom’s issues were not due to bladder cancer.
And, I will only echo what Mike and several others have mentioned. A second opinion and an exploration of options for the bladder replacement would seem to be essential. Your mom will have the possibility of a long life, and the right choices now will make that long life a pleasant one!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Well I suggest that you and your mom start asking some questions right away. Indiana pouch is often done for women her age and they do fine with it.
Another thing is that you want this surgery done at the best place possible from the top doctors.
Maybe they are suggesting ileal conduit because it’s the only thing they can do. Urinary diversions have come a long way in recent years. She should go to someone who does them every week, week in and week out. At least 50 a year is the minimum number she should accept.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi Mike,
I really don’t know much. Mom had a bladder tumor removed seven years ago that was cancer. Had BCG treatments and has been clear for seven years. My guess is that because she belongs to Kaiser and that she is 75 years old they will do the cheapest easiest procedure for them. My mom is in EXCELLENT health. Doesn’t smoke, drink, is not over weight. As mentioned she still works on her feet all day as a department store model. She is beautiful. She has had phone calls from friends of friends saying that they have the internal bag (again sorry I don’t know the terminology). I asked Mom how old are they and she said that everyone she talked to is in their early 50’s. I think that makes a difference to t he Doctors. They are young and think 75 is old.
Thank you Mike,
Sheri
Pat, I don’t know how to respond privately. As mentioned, I am new to forums. Sorry. The history is this. My mom always goes for her yearly physicals..to the GYN and regular Physician. Seven years ago Mom’s urinalysis showed RBC, she had no symptoms. She was sent to a Urologist, had a Cysto which showed a tumor. The tumor was removed, found to be malignant and she had BCG treatments. then frequent Cystos until the five year mark. After being clear for five years she’s been having Cystos once a year. As previously mentioned, after the GYN and Proctologist found nothing after she has been complaining of terrible rectal and vaginal burning my Mom took it upon herself to schedule the Cystos. two months early. My Mom belongs to Kaiser and lives in Westlake, CA (southern California, Ventura County)….. I am very concerned with Kaiser. Although she loves Dr. Singer and trusts him. However the fact the Dr Singer (being a Urologist) said her vaginal and rectal burning has NOTHING to do with the bladder is a big red flag. He is saying that we have to deal with what we know and for now we need to remove the bladder. Last week she had a CT Scan, bone scan and chest Xray. All ok. I will suggest to my parents getting a second opinion. And definitely print out your email. The nerve stuff you are explaining makes sense to me! I don’t know the kind of cancer or grade etc. I just know it is higher up in the bladder (which we are told is not good) and more invasive. Thank you so much!
Sheri91360
Sheri,
Don’t worry about the terminology.
So did they decide that they can not do an Indiana Pouch (a replacement bladder constructed inside the body that the ureters are connected to with a creation of a stoma that can be in or near the navel and emptied with a catheter)?
It sounds like you may be describing the ileal conduit surgery where the ureters are connected to a stoma on the outside of the body and a bag is placed over the stoma to collect urine.
The surgeon should know that she is left handed and you both should ask the doctor about that placement.
Is she otherwise in good health? Do you know why they are going with the bag instead of a continent diversion (Indiana Pouch)?
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
