Serious concerns.

My husband was told by his MD that he needs a radical cystectomy for the T1 tumors that they removed in his bladder.  That seems like a very serious surgery for a T1.  Is there anyone who has had this done and how did the recovery go.  They also said there is the chance of delirium, speech changes, disorganized thinking inability to concentrate and confusion resulting from the surgery.  My husband is in good mental health at this time and I would surely not want to have him have these things happen to someone like him.  Can anyone help me with my concerns? 

 

On 1/7/2009 pharm wrote:

My husband was told by his MD that he needs a radical cystectomy for the T1 tumors that they removed in his bladder.  That seems like a very serious surgery for a T1.  Is there anyone who has had this done and how did the recovery go.  They also said there is the chance of delirium, speech changes, disorganized thinking inability to concentrate and confusion resulting from the surgery.  My husband is in good mental health at this time and I would surely not want to have him have these things happen to someone like him.  Can anyone help me with my concerns? 

Hi, my name is Carol, I am 70 years old. I had an RC in 2006, am cancer free (so far) and about to enter my 4th years of that status. I had a neo bladder construction during the RC. So far I am doing well with it, after the initial recovery period. Learning to use the new bladder was not difficult and I have had no real problematic mental issues. Of course it takes time to adjust to having cancer, going through the surgery and recovering. There are side affects due to the bowel being involved for use in the newly constructed bladder. So gastointestinal problems have to be dealt with and I am still figuring out how to do this with proper diet and doing all I can to remain healthy. Getting support from groups or good friends you can talk to always helps. I feel that this surgery saved my life as the cancer could have spread outside the bladder and because I had the option of getting rid of the cancerous bladder, I was lucky in many ways. I am hoping to continue to be cancer free, but keep my check up appts and keep hope alive in my heart and soul. I wish you well. Carol

 

On 1/7/2009 pharm wrote:

My husband was told by his MD that he needs a radical cystectomy for the T1 tumors that they removed in his bladder.  That seems like a very serious surgery for a T1.  Is there anyone who has had this done and how did the recovery go.  They also said there is the chance of delirium, speech changes, disorganized thinking inability to concentrate and confusion resulting from the surgery.  My husband is in good mental health at this time and I would surely not want to have him have these things happen to someone like him.  Can anyone help me with my concerns? 

This is a P.S. from Carol. I had T2/3 cancer, but it started out as T1. I was told that about 65% of T1 tumors can develop into T2 and beyond. My age was a factor as well. I was 63 when the T1 was found, the RC surgery needs to be done when (in my experience only) when the patient is healthy and well, particularly for women. It is said that women over 70 who are not in good health are not good candidates for an RC. I have very little problems with incontinence, only during sleep if I have not been attentive to what I drink before bed time. My experience is that the bladder holds about 4 hours of liquids, depending on intake, and emptying before bedtime and at least this time frame during the day, usually prevents any leakage. I have had only one infection in all this time and can detect when it may be occuring and get to my Primary Phy. for help with it. All and all it has not been a bad decision on my part;; I don't worry about further progression of the cancer in my bladder, or it going outside the bladder now. Everyone is different and yes it is a difficult decision. I hope I have helped you somewhat in your decision making. Carol

Here's my experience; my husband underwent a radical prostectomy last February for an "aggressive, advanced bladder cancer." His bladder, prostate, & pelvic lymph glands were removed. His post-surgery pain management included 7 or so days of morphine; the side effects were exactly what you described. He was incoherent, cranky, agitated, and confused. I urge you to clarify this information with the doctor; every cancer patient needs an 'advocate' who will ask good questions, follow the myriad details of the medical treatment, and act with the patient's best interests. I hope the doctor told you about whether the prostrate will also be removed. If it will be, there are subsequent side effects that the patient really needs to know about (and his pertner too). I hope this is helpful.

 

On 1/7/2009 pharm wrote:

My husband was told by his MD that he needs a radical cystectomy for the T1 tumors that they removed in his bladder.  That seems like a very serious surgery for a T1.  Is there anyone who has had this done and how did the recovery go.  They also said there is the chance of delirium, speech changes, disorganized thinking inability to concentrate and confusion resulting from the surgery.  My husband is in good mental health at this time and I would surely not want to have him have these things happen to someone like him.  Can anyone help me with my concerns? 

 

No this is not out of line. Bladder cancer has a very high cure rate, but also a very high reoccurance rate.  To improve the odds that  it will not return they often do surgery.   A second opinion at a highly rated bladder cancer treatment center would be advised.  Sloan Kettering, Cleveland Clinic, Mayo Clinic, MD Anderson ...

You may also want to check the discussion groups on the Bladder Cancer support site.   They have a very active support/discussion group section that is invaluable during treatment.  

http://www.inspire.com/groups/bladder-cancer-advocacy-networ

My husband is a bladder cancer patient.  He was treated with BCG/Interfuron for three years and then had a radical  cystectomy.  Unfortunately the cancer has metastisized to his spine and is now considered terminal.  If we could have seen the future he would have gladly had the surgery 3 years ago.   The advances in bladder cancer surgery are nothing short of miraculous.   They can now create a new bladder to replace the cancerous one with portions of your colon.  This proceedure is called a neobladder.   

 

 

 

 

 

 

 I had RC dec of 07 After almost 2 years of trying save my bladder, Then I had it removed using robotic surgery at henery Ford in Detroit, I also would have done it sooner but was glad when I finily did, i had no pain did not  use any drugs. I have the neo bladder, feel free to contact me if I can help in any way. Keep in mins about angle flights if you have trouble getting to treatment orSuch as you are in an area of no comercial airlines or you do not have the money. I am apilot and plane owner and I do this in the area I live. Don

I had an RC in October of 2008.  I had none of the side effects that were mentioned.  I was in the hospital for an extra week due to the intestines not "waking up" properly (called an ileus).  Morphine was the drug of choice and maybe that can cause some of the other issues.   They pretty much always remove the prostate at the same time.  The side effects of that are bigger than the side effects of the RC.  Have him discuss getting "nerve sparing" when they remove the prostate.  Lymph node removal can cause some upper thigh numbness but that usually goes away over time.

Usually, it is a week in the hospital, a couple/few weeks with a catheter, and then some time wearing pads while he regains daytime continence.  That comes fairly quickly as long as you follow the doctors orders with regard to doing the Kegels. 

Do get a second opinion from a major cancer center if possible.  Most insurance companies want you to get a second opinion. 

I am glad I got mine removed as I am now cancer free.

Mike

How long did the cranky, agitated, confused state last?  I thought that was more of a potential reaction to the anesthetic and not the surgery itself.

 

 

On 2/4/2009 mikemc wrote:

I had an RC in October of 2008.  I had none of the side effects that were mentioned.  I was in the hospital for an extra week due to the intestines not "waking up" properly (called an ileus).  Morphine was the drug of choice and maybe that can cause some of the other issues.   They pretty much always remove the prostate at the same time.  The side effects of that are bigger than the side effects of the RC.  Have him discuss getting "nerve sparing" when they remove the prostate.  Lymph node removal can cause some upper thigh numbness but that usually goes away over time.

Usually, it is a week in the hospital, a couple/few weeks with a catheter, and then some time wearing pads while he regains daytime continence.  That comes fairly quickly as long as you follow the doctors orders with regard to doing the Kegels. 

Do get a second opinion from a major cancer center if possible.  Most insurance companies want you to get a second opinion. 

I am glad I got mine removed as I am now cancer free.

Mike

Thank you so much for your response to my concern.  I wish my husband was going to have the same surgery you had because it sounds like they created a neo bladder for you.   My husband's doctor said he isn't a good candidate for a neo bladder because of the radiation he received about a year and a half ago to kill the cancer they found in his prostrate.  The intestine that they use to create the new bladder usually has been damaged by the radiation therefore cannot be used.   In his case they will create a small tube using  some of the small intestine and route the tube out of the  body and end in a stoma.  There will be a bag attached to the stoma which he will have to empty when full.  He goes in for surgery this coming Monday 2-9.  He's anxiously waiting to get this done because the waiting is emotionally exhausting. 

Barb   

The irritability stopped once the morphine was discontinued, probably 7 or so days after the surgery. He was given hydrocodone (sp?) for pain management which he still takes one year later.