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My Dad had just recently been diagnosed.

7 years 3 months ago - 7 years 3 months ago #41673 by mmc
Oh yeah.... As to your comment about how common bladder cancer is:

It is the 5th most common cancer over all. It is the 4th most common in men and the 8th most common in women. In the United States there were approximately 535,000 men and women alive who had a history of cancer of the urinary bladder -- 395,000 men and 140,000 women. (This info is on the Statistics page here on the site: http://bladdercancersupport.org/bladder-cancer-help/bladder-cancer-facts/statistics)


However, it is not in the top 10 cancers of what people die from. Lung, colon/rectal, breast (for women), prostate (for men), and stomach are the top killers in that order.

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...

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7 years 3 months ago - 7 years 3 months ago #41672 by mmc
Since you will be hospital with them, you can help get him walking. Again, read that link from the University of Michigan Hospital's website about recovery. I am repeating it here: http://www.med.umich.edu/1libr/urology/postcare/cystectneobladder.htm

It says at least 6 times a day. First, just walking in place by the bed, then down the halls.

He will probably say "I can't" in a kind of whiny little voice. You just have to tell him that the same way he told you to stop whining and just do it when you were growing up, it is time for him to do the same. The more steps he takes the less days he will be in the hospital and the less hours he will feel like someone ran over him with that truck and backed up and did it again.

It is very, very serious and tough surgery to recover from. People older than he is have been through this surgery as well and been out in 4-7 days. It is so surprising how much your darn intestines have so much power over ones general feeling of well being (or not).

When he gets the surgery, keep posting updates here on his recovery. Keep track of how many walks he is doing and let us know. We'll help coach and advise. Most hospitals have free wifi so plug in we will do all we can.

If he does what we and the nurses tell him he will be doing great in no time. While it can take a loooong time to be back to 100%, things start getting better on day 3 and every day thereafter. Day 2 is usually really tough because the internal anesthetic has worn off and there are lots of stitches and tubes and drains. If he gets really crabby, it is likely the morphine. Some people do better with dilaudid but heavy duty pain killers make you weird. Don't pay any attention to it. Tell your mom the same. Some people get really cranky and obnoxious though. You still need to make him walk. :)

Remind him that he needs to stay on top of the pain but don't be leaning on the pain med button so often that he has no pain at all. That will make it take longer to get better and he will feel crappy longer.

Sorry for droning on but it is kind of important stuff.

Best of luck to all of you. This kind of stuff is tough on everybody in the family.

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...

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7 years 3 months ago #41671 by CatherineH
Hello Carol... Love the photo of your mom and dad! What an adorable couple they are!

I wanted to welcome you to the forum. I admire the way you have thrown yourself into finding out everything you can about your Dad's procedure. Knowing what to expect is very important so you can be prepared as a caregiver for what he will go through , and he will be better prepared because you have shared what you learn with him. I think the three of you make a great team!

I haven't had your Dad's procedure so I can't answer your questions so I'll leave that to the guys. As you've already discovered, Mike (mmc) is a wealth of knowledge about neobladders and the associated things that go along with it. As you may have read, it certainly didn't slow Mike down for very long. And, I am happy that Michael305 has done so well too.

Again, just saying hello and welcome. My very best wishes for a great outcome for your Dad! You're going to be an awesome coach, for him and your Mom!

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 3 months ago - 7 years 3 months ago #41669 by mmc
Carol,

"Tube feeding" is highly unlikely. Unless someone is just using the wrong words. He will have an IV. That keeps fluids going while he can't ingest any.

There is something called TPN. Because I had complications (ileus) I could not eat or drink anything for an extended period of time so they put me on that. There are three bags of different types of things that basically pump into his veins the resultant nutrition similar to what would happen if digestion had actually happened and enriched the body nutrients. Here is a link: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601166.html

Again, that is only probable if he winds up having an extended stay. "Tube feeding" is when a tube is put up the nose (or through an incision in the abdomen) and then into the stomach. That's for people who can't swallow. Sometimes stroke patients need that.

It is HIGHLY unlikely that he would have to wear adult diapers for the rest of his life. If that were the case people would not bother getting neobladders. They'd get an Indiana Pouch or ileal conduit (external bag). Over 95% (I think its even higher but I can't find the number right now) of men regain day time continence. A little more than 90% of men regain night time continence with the neobladder. I was in the unlucky few that didn't get night time continence back. What I just do is wear a condom catheter when I sleep and it is hooked to a catheter bag. I don't wear pads or diapers. Some guys wear the pads because of very minor leakage during the day but usually that resolves with maybe the exception of coughing or laughing hard or something like that. Some guys even wear panty shield things because it's such a small amount of leakage. As for me, I don't do anything special during the day.

If your mom is healthy it is likely he would not need any home health care. For someone living alone it would be highly recommended. Most things he can do himself or with a little help from your mom.

As to sexual function, that can vary in the time it takes. Yes, they always take the prostate. The risk of spread is just too high. Nerve sparing is important to retain the feeling. There are also things his doctor will work with on for regaining erectile function. There will be no ejaculate (well...you asked) but there are still orgasms in every other sense of the word. It can take anywhere from a few weeks (although he wouldn't have the energy for it at that point anyway) to a couple of years for normal erectile function to return but there are things (pills or shots or other) that he can use in the interim. Lots of guys need that just due to age so it isn't really a big deal.

The lack of erections after the surgery is actually going to be a godsend for the other problem he is concerned about. The biggest problem for most guys with a catheter is that men have spontaneous erections. Erections cause that catheter tube to have some issues unless it is well lubricated and even then it never seems to be lubricated enough. I think they say there are typically at least four erections during sleep. That is one of the big causes of pain with the catheter. The other thing is there will some numbness just due to nerve shock and other things after the surgery so the catheter really is not such a problem.

He will likely have it for 2-3 weeks after getting out of the hospital. I thought this information was in the surgical recovery link I posted for you earlier. If you haven't read that, please go back and read it. It talks about all sorts of expectations and what to do.

Let us know if you have any more questions. Be sure to read those links and give him the information on the kegel exercises and such.

Tell him there are bunch of us here who have had the surgery he is facing. Some are just done with surgery and others of us are years out from our surgery. We are more than happy connect and he can ask us anything he wants.

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...

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7 years 3 months ago #41668 by scjabaldi
Thank you all for the responses. I am finding out very quickly how common bladder cancer is. I have come in contact with a couple of people that have family or friends that have bladder cancer, one that has the neobladder and one that has the urostomy.

My dad is 69, actually turned 69 two days after we found out that he had bladder cancer. At that point we didn't know if it had invaded the muscle. His doctor is Dr. Arnold Bullock and will be having surgery at Barnes Jewish Hospital in St. Louis, MO.

My parents are both truck drivers, they have been a husband & wife team for about 31 years and my dad had been driving for many many years before mom joined him. Dad isn't ready to retire and very anxious to get back to work, they are actually still out on the road today finishing up their last trip before surgery.

Another question I have is about the intestinal recovery if they are able to do the neobladder. I read the information about having to wake up the intestines by walking and chewing gum. Is there going to be a period of time that Dad won't be able to eat? Someone had mentioned that he might have to be tube fed for a period of time after surgery and I was wondering if that is true?

I'm also hearing about Home Health, is it common to have Home Health after this surgery?

Is it possible to control the leakage or should we try to prepare dad for having to wear pads or depends for the rest of his life after surgery?

What is the normal expectency for the catheter after surgery. Dad hasn't handled the catheter very well with the 2 tumor resections he went through and he is concerned that the extended catheter requirement is going to send him to the nut house. I'm hoping that the catheter won't be as annoying because he won't have that constant feeling that he needs to pee with the neobladder.

Before I ask the next question, please keep in mind that I have very open parents that have always been nothing but honest with all of us kids. They have always been open with how much they love each other (which they would have to love each other alot to spend 30 years in the close courters of the cab of a semi). Since we are grown it's been a big joke when mom and dad go on about their sex life and us kids start hollering "TMI, TMI". Now for the question. . . Is the prostate always removed when the bladder is removed? What I have read is that a nerve sparring procedure can be done that could potentially allow him to resume sexual activity. Without asking you to give up to much information, can you just tell me one way or the other. I don't mean to be to personal but I know this is a big concern for my dad. I would like to relieve some of his worries before surgery if at all possible.

I just came into contact with a coworker that her dad has the neobladder and is almost 2 years post surgery. Her sister sent me an email with alot of good information regarding the recovery period but it is also very scarey. I know I didn't realize the extent of recovery and I know my dad doesn't realize everything that is involved. Please keep the information coming. I want to be as informed as possible going into this.

I will be staying with my mom and dad at the hospital and will be helping them get situated at home and will be there fulltime in the early stages of recovery. I am taking a leave of absence from work to be able to support and help them adjust and I want to know what to expect.

Thank you all from the bottom of my heart. Your experience and knowledge can help make our transition to this new life style so much easier.

I look forward to talking with all of you more in the very near future.

Thank you,
Carol

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7 years 3 months ago #41666 by michael305
Hello Carol first off I would like to welcome you here. I was faced with the exact situation as your dad. I am 49 and was 47 when first diagnosed 2 yrs ago. I had a Neo bladder done and Like mike said you dont know if your going to get till the surgery is done. my surgery was done at IU university in Indianapolis. my Doctor is Michael Koch and he saved my life. he did the best he could have done.

I was in surgery for 3 hrs instead of 8-9. I was up and walking after my 2nd day and out of hospital and back home on my 4th day. Understand everyone is different so what might of been a quick cut and out does not all experience the same. the main thing to remember is that he will be fine. I returned to work after 2 months at home. the most important things I can say is Water is like god to the soul- Drink plenty and walking is the biggest thing to do regardless of how bad you feel you have to get up and walk. please feel free to inbox me if your Dad or you would like to talk I will give you my contact info its been done before. good luck :)

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