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Re:”High grade” diagnosis
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 -
16 Replies
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Carol,
Wow that is quite the roller coaster ride. But it sounds like things are going in you fathers favor. It’s always a good idea to get a copy of the reports. That way you can always come here, or go over to the American Cancer site to get information on how to read the reports. That can really help your mind rest, when you know what is going on first hand.
Now we just have to wait for May 17th to get the rest of the story.
Attachments:
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Wow! Sounds like good news to me but it sure took the long way around! :)
I hope everything is ok. Glad you got the pathology report. When you read it was it all confusing? Did it indicate that there were good margins? I wonder why there was so much confusion in the first place.
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.
My goodness… what a roller coaster ride you have been on. I wish your Dad the best outcome on his path report and whatever procedure he needs as a result. I know this is truly a family affair and my heart goes out to you all while you await the results.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
I thought I better get on here and give an update. So much has changed in the last week and a half. I’m going to back up just a little bit so it doesn’t seem so confusing.
My Dad had his 2nd tumor resection on March 12th trying to determine if the cancer was in the muscle since the first pathology sample didn’t have muscle tissue to make this determination. When they got in there on March 12th the tumors had regrown in their original site which indicated to Dr. Bullock that Dr. Stokes either didn’t get it all the first time or it was that aggressive and grew back.
Dad got a call from Dr. Bullock on March 21st with the pathology results and he told Dad that the cancer had definitely invaded the muscle and the 3 other sites that he had been suspicious of Carcinoma In Situ had tested positive for cancer and we had no option but to remove the bladder. Surgery was then scheduled for April 12th with April 6th for Pre-Op and Surger Consult with Dr. Bullock, Pre-Op scheduled first.
When we got in the Surgery Consult with Dr. Bullock he pulled up Dad’s chart and started reading from the pathology report, this is where we get confused, he starts telling us that the cancer has NOT invaded the muscle that it is adjacent to the muscle and the 3 other spots that had been biopsied (the ones he felt was suspicious for Carcinoma In Situ) all came back no malignancies. For 2 weeks my Dad has been so upset and down in the dumps and in a matter of seconds we hear the opposite of what he had been told on the phone. I was so confused I asked Dr. Bullock 3 or 4 times to make sure that he was telling us that it had NOT invaded the muscle at this point. I had been freaking out worrying about how long it had been in the muscle and if it had spread to the other organs already and just really thinking the worst.
When Dr. bullock looked at the surgery schedule and realized that dad was already on the schedule he started talking about the surgery. What he wanted to do was to do a cystoscope when they first got into the OR and see if he saw any obvious tumor regrowth, if there was obvious tumor they would remove the scope and transition to the full bladder removal. As he was looking at the schedule he realized that they had scheduled the surgery wrong. Dad has said all along that he wants the Neobladder but they had him scheduled to get the Urostomy bag after the bladder was removed. So it was quickly decided that they wouldn’t be able to remove the bladder on April 12th if necessary, so what Dr. Bullock decided was that he would do a cystoscope in the office on April 6th and if there was obvious tumor regrowth we would cancel the OR time on April 12th and just reschedule the bladder removal on a different day. When he got in the bladder in the office he found 3 different sites that he was suspicious of tumor regrowth but no obvious tumor, one of them being in the middle of one of the original tumor sites. He decided at that point he would like to resect those sites one last time to see what pathology tells us. We went back April 12th, since we had the OR time, and Dr. Bullock did a 3rd resection. He said that Dad probably wouldn’t have to go home with a catheter because it would be a superficial resection. Well we got our hopes up too much on that one. Dad did end up coming home with the catheter again because they have resected the original tumor site so many times and had to go so deep that the bladder is very thin there. Dr. Bullock said the chance of rupturing his bladder was too high if he didn’t have the catheter for 4 or 5 days to allow the resection sites to heal over. Reports from Mom says that they have figured out how to strap the leg back on him and he’s not having as much discomfort as he did with the past catheters. :)
SO ONCE AGAIN WE WAIT!
If pathology comes back showing tumor, we already have another surgery date for May 17th, a little farther out than I would like, but I feel we have a little more time since it hadn’t invaded the muscle as of March 12th. I got a copy of pathology so I could read for myself what the truth was. I work with medical records and had to see the documentation before I could comprehend what was real at this point. My dad has also now requested that all his reports be sent to his house, partially because he knows I like to see it all.
If pathology comes back showing no tumor we will be transitioning to the BCG treatments back home with Dr. Stokes.
I really hope this didn’t come across as me talking bad about Dr. Bullock because that’s not what I meant at all. I just wanted to update everyone on the change of events. He is an awesome Dr. and we all love him and trust what he is doing, not sure how the information got so messed up on the pathology, but I am a strong believer that things happen for a reason. I told Dad that it wasn’t meant for him to get his bladder out yet so we are thankful that everything was scheduled wrong because otherwise we would have went ahead with the bladder removal and he has been given another chance to save his bladder. :)
Quite the change of events in the last few visits. I will definitely repost and let you know what the pathology results are.
Thank you all for all of your information, this site has been such an amazing way for me to deal with Dad’s cancer diagnosis. Hearing all of your words of encouragement and your experiences has gave me comfort in knowing what to expect. I can’t even begin to tell you how much I really appreciate it.
I will talk to you soon!
Carol
Carol
I think EVERY one of us has had the same questions when we were diagnosed. They are perfect questions.
While in the hospital, don’t worry about your father wanting to eat. I was in for 8 days and I never really had the urge to eat. As I was walking out the door of my room to go home they brought me my first meal…… Ahem! I passed. I did lose 24 pounds and that wasn’t a bad thing.
I was 53 at the time of surgery and I had the same question about erectile disfunction. I had nerve sparing neobladder surgery and they always take the prostate. I had about a year to 18 months of time to get that working. I didn’t gain full confidence until the 2 year mark. Each time I began to feel bad about this, my wife assured me it was better to have me alive. She was a great partener through all of this.Mike and I are probably the norm when it comes to being continent. I was fully continent during the daytime by my 4th month. But nightime is another thing. I have to get up 2 times during the night, most nights. Since there is no “normal Urge” sometimes, during a deep sleep, I lose a little control. But…. That is the small price we pay for being alive.
The last thing I can say is “Thanks for finding us” I wish I had found these guys before my surgery. They make a very scarey thing; bearable.
This is a BIG Time deal. But it is merely a door that your family will pass through to being cancer free. My family found this experience to be both freightening and Bonding. We were all kinda just going along with the day to day things and suddenly…. Wham! cancer. But the whole experience made us all stop and realize we were on autopilot. Just cruising. As a group we all came together and fought this disease. And we are better people for it.I hope everything works as well for you and your family. I will keep you in our prayers.
Now…… Lets get this show on the road!
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Welcome Carol
Sorry you have to be here but as the rest of us have found out it is not impossible and your dad will come through this beast with flying colors.Once again I have to say Mike what a great guy you are and such a comforting and imformitive help you are to all of us.
Barbara
Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good
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 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.
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 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.
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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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 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.
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
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 :)
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 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.
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!
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 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.
