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2 years 8 months ago #50885 by GKLINE
Hello Dakota
Just wanted to let you know that I really am pleased that the Dr is positive about your prognosis. The next step is the pathology report that will determine if there is a cancerous growth. If there isn't, then you are good to go! And life just had a small bump and you hardly felt it.
If the pathology comes back with that pesky c word.... this is still not real bad news. But the protocol is that you will have a second TURB to fully determine if they did indeed "Get it all"
If things check out that you are cancer free....... You will probably hear about BCG treatments. This is to help insure that you will stay c free.

I am hoping that you do not have any pesky c cells anymore and you can move on with your life.
But PLEASE take it a day at a time and do not allow yourself to fall into a pit of despair. It is just a waste of time.

Keep us in the loop. We love to hear good news

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]

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2 years 8 months ago #50884 by Mike M
What you described is normal...had the same concerns initially. Laying on your back or side should be fine...just remember to keep the bag below your bladder. I actually kept the larger bag on during the day if I wasn't going outside since you don't have to empty it as often. Attached it to a small rolling rack for carry-on luggage...worked great! Get some rest!

12/15 - DX - Ta HG, 1.5cm Pap, Focal CIS; Treatment: SWOG Protocol...currently BCGx27

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2 years 8 months ago #50882 by Dakota
Thank you so much Mike. Any and all perspectives/advice is greatly appreciated. They did give me both bags and I'm currently laying in bed with the overnight bag and have it hanging below me on a night stand. I notice that it doesn't seem to be completely draining it seems to stop because the tube goes upwards before going into the bag. Should I be concerned and try to find a different position or will gravity/force do the job?

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2 years 8 months ago #50880 by Mike M
Dakota,

So sorry to hear you're going thru this at such an early age. Mine is a male perspective.

Regarding the catheter, I've had two TURBT surgeries since Dec 15 and had a catheter both times. First time was for 12 days and second was for 3. Hopefully they gave you a day bag (to wear on your leg with a velcrow strap...to keep the catheter in place) and a larger bag for night (hang on the side of your bed or place in a small waste paper can...hang inside the can off the side) so you can sleep the entire night without getting up to change your bag). I usually wore lose fitting clothing...sweat pants (outside) and gym shorts or pjs (inside your home). Getting up and walking around is important also...hopefully your post-op instructions addressed this. YouTube has various videos regarding how to use the Foley catheter.

Best advice is to relax and take it one day at a time. Your pathology report will determine the way ahead. Wishing you the best!

12/15 - DX - Ta HG, 1.5cm Pap, Focal CIS; Treatment: SWOG Protocol...currently BCGx27

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2 years 8 months ago #50879 by Dakota
Thank you so much Cynthia. I can't even explain how much your words helped me. I had the turbt done today. The tumor actually ended up being about 5cm but the doctor said he was able to get it all out. I feel okay except for this dang catheter which I have to wear until Monday! Ugh. Is that normal? It just seems like such a long time. This all happened so fast so I am still very lost. I live in the Toledo Ohio area and my urologist is dr. Murtagh out of the university of Toledo medical center. He told me that we probably wouldn't be getting the pathology report back until the week after next. He also told my boyfriend that the good news is that even if the results come back bad he was able to get it all out so I'm not really sure what to make of that? Thank you again for your response it definitely reminded me that I just needed to relax. Anyone here have any tips or tricks for keeping comfortable with this darn catheter in?

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2 years 8 months ago #50868 by Cynthia
Dakota, I am sorry you are here but welcome to our community. The first thing I will tell you is take a big breath. Until you get your pathology back you do not know what you are dealing with. The worst thing you can do now is do a lot of reading about things that may have nothing to do with your diognosis and scaring yourself. If you do have bladder cancer 3/4 are none invasive and the largest majority of them are low grade. So right now hold onto the fact that statistics are in your favor here.
I always had a plan as in I knew what my next step was if I needed to take it. Depending on where you live if you are not going somewhere that deals in a high volume of bladder cancer you need to know where to go for a second opinion if you need it. Let us know what state you live in and we may be able to help.
You are very young to be dealing with this lets hope that it is benign but if it isn't we are here and I can tell you for the vast majority of us life goes on and is good. Be gentle with yourself right now the waiting in someways is the hardest. If you have questions or just need to vent don't hesitate that is what we are all about.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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