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My Dad had just recently been diagnosed.

7 years 3 months ago #41607 by mmc
Carol,

Going back to work depends on the job.
I travel for work and could not travel for a couple of months but I was able to work from home a week after I got home from the hospital.

I had complications so I was in for 12 days instead of 4-6 days.

I just did a couple/few hours a day building up over a few weeks while I was unable to travel.

Lifting can be an issue. I had numerous incisional hernias when I started traveling because of putting my bag in the overhead bin and offering (and putting) other people's bag in the bin for them. So...I recommend not doing that type of thing for a while. The doctor who did my hernia repair suggested I wear an arm sling or something when I travel to remind myself not to lift the bag and to ask someone for help instead of even doing my own bag (just for a few weeks).

Anyway, his doctor sounds great and I bet he'd be able to tell your dad about returning to work based on his duties.

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 #41601 by scjabaldi
My name is Carol and I am looking for information regarding High-grade T3 Bladder Cancer. We just learned this past Wednesday that the Cancer has invaded my dad's bladder muscle and we are preparing for a radical cystectomy with the creation of the neobladder.

I'm looking for as much information regarding the whole process, from the day of surgery to when you can return to work. It is our understanding that recovery takes anywhere from 4 to 6 months. I'm wondering how long a typical hospital stay is for this procedure and what recovery includes. My family has so many questions and I thought this might be the best place to get information. . . from the people that has lived it.

My Dad's doctor is Dr. Arnold Bullock from Barnes-Jewish Hospital in St. Louis, MO. We have met with Dr. Bullock twice so far and have been very pleased with his care. Everything I'm reading indicates that he is among the best in this field, which is very comforting.

I'm looking to find out as much as I can. I am very close to my dad and I want to be able to help him the best way I can. I feel like I can help him more if I have an idea of what to expect.

My Dad has never been sick other than a bout with kidney stones and an emergency appendectomy. Everything is moving so fast it is hard to get a grip on any of it before we are hit with something else.

Another fear I have is that since we found out Wednesday that it is in the muscle, are the chances very high that it could have already spread outside the bladder. Everything we are finding is that it quickly metastisizes once it gets in the bladder muscle. We are possibly looking at not being able to get the bladder out until mid April or later and this makes me very nervous.

Please share your experiences with me.

Thank you!

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7 years 3 months ago #41600 by mmc
Carol,

Here is a site that has good information about post surgery: http://www.med.umich.edu/1libr/urology/postcare/cystectneobladder.htm

Something he can start doing now is kegel exercises. Since the neobladder is made of intestine and not a muscle he will have to strengthen his pelvic floor muscles. Here is a link to the exercises he can start now. The sooner the pelvic floor muscles are in shape, the faster he will regain continence after the surgery.

https://patienteducation.osumc.edu/Documents/IncontinenceExerProg.pdf

This last link is a primer on the surgery and the options along with pros and cons of each: http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

Hope these are useful for you and your dad!

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 #41596 by mmc
Carol,


How old is your dad and what kind of shape is he in?

The surgery lasts between 6 to 8 hours and is pretty darn traumatic on the body. They won't know for certain if he can get the neobladder until they are in there.

Is he getting chemo first or is it planned for after?
Where is he getting the surgery?

He should get it from someone who does at LEAST 50 a year. You want a surgeon who does this day in and day out. Study after study has shown this results in better outcomes.

The hospital stay will likely be 5-7 days. It all depends on how fast his intestines wake up. That can be helped by him chewing gum after surgery (no swallowing) and by walking. He will NOT feel like walking but he MUST. The surgical nurses will help you figure out when but it should be as soon as he can. Even if it is just walking in place a bit next to the bed the first time, it is beneficial. The next day he should walk out of the room in the morning and up the halls in the afternoon, early evening, and night. Someone needs to be with him for the walk because he will be shaky and he'll have tubes and drains and a catheter. He should keep the pain 'under control'. That is, not let it get out of control but also not expect to have no pain. The pain meds slow the wakening process of the intestines.

When he's home, he needs to walk also. Getting outside and walking a bit one way and then back the other, never getting very far. Tiring out VERY fast will be expected.

When coming home from the hospital he should have a pillow or giant teddy bear (depending on his sense of humor) to hold against his abdomen when in the car.

Other folks here have a lot to contribute as well. Are there specific questions that you have?

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 #41595 by scjabaldi
Mike,

My dad has just been given the diagnosis of High-grade T3 bladder cancer. We are waiting for a surgery date to have his bladder removed and they will be building him a neobladder as well.

I would really like to know what we should expect from hospitalization and the recovery process after he comes home. Any information you can give me will be greatly appreciated.

Thank you,
Carol

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