Hello from a newbie

10 years 2 weeks ago #40214 by Alan
Replied by Alan on topic Hello from a newbie

You have somewhat similar early notes-except I didn't have colon cancer. My tumor was 1 CM which is tiny. With a high probabilty you won't need a cath and bag but, you are very smart to keep asking what if and being informed in case. The key will be how much digging around your doc will have to do to get good "margins". I was out only about 30 minutes as he was very thorough. Don't be surprised if is suggested another TURB after you heal. It happened to me. That is almost standard protocol for this disease to be sure. Otherwise, many times the tumor is understaged.

Anyway, you are already ahead of where I was on understanding this cancer. Heck, let's hope it isn't even that so as most will say-take one day at a time and go from there.

Keep asking, someone will help and have answer.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

Please Log in or Create an account to join the conversation.

10 years 2 weeks ago #40211 by PST
Replied by PST on topic Hello from a newbie
Thank you Catherine and Mike for the catheter information. I hope I'm lucky on that score. It's another reason I hope that I have the TURBT this Tuesday. I would rather walk around at the family Thanksgiving party with a urine bag strapped to my ankle than do so at the office. I suppose it will mean that I have to tell my parents, though.

A couple of people suggested that I say where I'm being treated in case anyone has experience with it. It's Northwestern Memorial Hospital in Chicago.

Please Log in or Create an account to join the conversation.

10 years 2 weeks ago #40208 by mmc
Replied by mmc on topic Hello from a newbie

You sound like you have the right attitude and you are on the right track.

As Catherine said, you can get a leg bag if you need. Depending on how things go during the TURBT you may not even have one in (catheter) when you go home. It all depends.

One important thing for men is to get that KY jelly stuff and use it liberally around the end of the hose where it enters the body. The natural growing and shrinking during sleep can cause that catheter to be quite painful without lubrication for the hose to slide back and forth as needed.

To reiterate what Sara Anne said, your doc should schedule a follow up TURBT if the first is confirmed as cancer. As your uro already told you, it likely is. However, there is a big difference between low grade and high grade. Given you're a cancer veteran, you probably know all about that stuff already.

There are different approaches depending on the stage and grade so you need to know that before you can figure out much of anything else.

Feel free to ask anything and everything. We're here to help. Since you have experience with cancer already, let us know what you want to know.


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...

Please Log in or Create an account to join the conversation.

10 years 2 weeks ago - 10 years 2 weeks ago #40199 by CatherineH
Replied by CatherineH on topic Hello from a newbie
Hello PST... Welcome to the site. Sara Anne is correct... you have learned a lot in a very short amount of time. And it sounds like your doctor has been an excellent resource for you as well. If you are at a major center for bladder cancer, you should be in good hands. If you let us know where/who you are seeing, we can let you know if we have any first hand knowledge about your facility. That said, a second opinion is never out of the question as you said.

Can't speak to the guy side of things, but I had a catheter for nearly 4 weeks after my surgery while the bladder healed. I had a partial cystectomy which resected the wall at the tumor site (bladder dome). The catheter was mildly uncomfortable at times, but I was grateful for it because it meant I still had a bladder.

For daytime use, there is a leg bag that straps onto the lower leg. It has a valve at the bottom that easily opens for emptying into the toilet as needed. They will tell you how to keep the tubing and bags clean. I was up and around in a few days, and out in public I wore my jeans, or sweats. It may be subtly noticeable but I just explained that I just had surgery and people were incredibly accepting and kind about it.

At night the tube is removed from the leg bag and attached to a larger nightbag that hangs somewhere onto your bed. It needs to be lower than the bladder so that gravity takes the urine into the bag and does not cause backflow which is uncomfortable and can cause a UTI.

Hopefully you will only have yours for a short while, if at all, after your TURBT. Mine came out the next day for that.

Will be hoping for the best possible outcome for your upcoming procedure...


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

Please Log in or Create an account to join the conversation.

10 years 2 weeks ago #40197 by PST
Replied by PST on topic Hello from a newbie
Thank you, Sara Anne.

I would like to hear more about this catheter business. I know how that works when you're in the hospital, walking around in a hospital gown and pushing an IV pole. That's easy; everything has its place. But what about out in the real world? Especially if you're male and conventional gender norms compel you to wear trousers rather than a muumuu. Can you run the line down your pants leg and strap the receptacle to your ankle? Is it visible to others? Can you get on an airplane that way? I managed to get through TSA earlier this year with a PICC line in place, carrying two-days worth of IV antibiotics and the equipment to administer them, but this sounds like it might be more difficult.

Please Log in or Create an account to join the conversation.

10 years 2 weeks ago #40196 by sara.anne
Replied by sara.anne on topic Hello from a newbie
WOW! You are learning a lot, fast!! And that is good, since the better informed you are, the better patient you will be.

It sounds as if you are getting good advice so far. Where are you located, geographically? Where are you being treated? All your "new friends" here will want to chime in with advice also!

Mitomycin after a TURB is good medicine...it doesn't act like a chemo agent, since it is applied locally to the bladder and doesn't get into your system.

The best part of the procedure will be the TURB itself, since you will sleep through it!! :) Afterward can be variable; you may or may not need a catheter for a couple of days, may or may not feel completely normal the next day. It is important that the uro gets really good samples, with enough of the underlying muscle to ascertain whether or not the tumor has invaded this layer. Very often a good uro will schedule a second TURB several weeks later; studies have shown that in a large percentage of cases, even in very competent hands, bladder cancer is understaged on the first TURB. It may be several days before the results are back from pathology.

There are a number of good sites (including ours!!!) with lots of information. A clue: if it is www.xxx.gov or www.xxx.edu they are probably reputable sites (either the National Institutes of Health or a university site). Anything with www.xxx.com is a commercial, money making site. Can provide excellent information (it appears that this one does) but they can also be "shill sites" for selling a bunch of stuff.

You will find a lot of people who have been there, done that here who will be more than happy to answer questions. We have all been where you are now. I know I was TERRIFIED and this site helped me put things into perspective.

Best of luck to you, and welcome to the club you didn't want to join!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne