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What to expect?

11 years 8 months ago #4571 by Gman1979
I am glad the procedure went well.

When my doctor first took out my tumor, he thought I would probably need BCG treatments b/c I think in his mind he thought it would probably be invasive. Just shows you how little one can tell from seeing and how important the pathology reports can be.

I had a stent in my ureter leading from my kidney to my bladder also. Called a Double J stent (b/c of the Js the stent forms to keep it in the bladder and the kidney). My urologist kept my stent in for six weeks and removed it in his office via cystoscopy. The stent was really, really uncomfortable for about the first week or two. Had to use my Lortab for the first few days or so. However, the pain went away and mine really didn't bother me after that. I was almost going to ask if it could stay in longer (I was getting married the week-end after he wanted to remove it), but he said that it is best to get them out once they have done their job.

The first time he tried to take the stent out, he was using a rigid cystoscope and it hurt like hell. I had trouble with its rigidness. I was trying to contort my body to make it comfortable and it just wasn't working. Understanding the pain I was in, he prescribed me some Versed (a hypnotic pain type medicine) and borrowed from the hospital a clasp type instrument so that he could use his normal flexible cystoscope. Man, talk about a world of difference. It was still uncomfortable, but it felt much, much better than before.

After stent removal, I had no problems. I was still passing a few scabs here and there, but he said that was normal. That only happened once or twice. I had slight pains, though, when I went to urinate. It was almost as though it was a mild pressure on my kidney. I figured that was my kidney and uterer adjusting to the new pressure. The pressure seemed greatest at the point where I had my nephrostomy tube in (its like I could feel the exact point on my kidney where the tube went in). However, that was a few weeks ago, and all pain has subsided. No more scabs or anything.

I hope this helps. Good luck with everything.

"I am third."
-Gayle Sayers

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11 years 8 months ago #4569 by karhart
Thank you everyone. Well, the surgery itself went well. However, as Gman said it took longer than we expected. The tumor was very large and growing up into the tube that goes to his kidney so they had to put in a stent. He has a catheter and it has to stay in for 2 weeks! He is supposed to go back in 2 weeks to have it removed and get the pathology. At some point the stent will come out too, not sure on when.

He is going to see if he can get this done at the local VA clinic instead of going back to Tampa. I am so glad to hear that just because it was so big does not necessarily mean it is invasive. After my experience with my husband I just tend to always fear the worst. Everytime he got results it was just more bad news, nothing worked for him. Denny did not feel to bad afterward. We went over the night before since we had to be there at 5:45A.M. They wanted to get home since they have a dog.

I did ask the doctor when he came out and told me and Janet the results if he thought he would need to follow up with BCG treatments and he said probably. So that makes me wonder if he thinks it might be invasive or would this just be standard since it was so large? Again, I don't want to project anything, and I certainly didn't say anything to Denny. I did tell him that I didn't think the path. would take 2 weeks and his doctor at the local VA clinic would be able to access the report on the computer. I know they could do that for my husbands records. Of course he doesn't want to wait 2 weeks to know. I am sure he will check on that today.

I would think he would have to go back to the hospital to remove the stent. Anyone have experience with this and how long he may need it? Thanks, all the info I have been getting is really helpful.

Karen

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11 years 8 months ago #4563 by Gman1979
Hey Karen. I am sorry about your husband. I am glad the message boards helped. I have been using them for a few months and I find it nice to talk to people that know what I am going through.

I had a TUR in early January. My uro said it would take about 30 min but it ended up taking about 2 hours. It was an outpatient procedure with an option on my part to stay overnight if I felt the need. It took him longer b/c the tumor was larger than he expected (he did not do a poke and peek before b/c he felt from the CTs and IVP and ultrasound that he knew enough about the tumor to take it out, which he did, but it just took him longer). He told me the next morning that he was concerned that it was so large, but that we would hear from the pathology lab in about 3 days. Thank goodness it was noninvasive.

However, I imagine the length of time he spent doing the procedure made my recovery a little worse. The position of the tumor (near the opening of my left uterer into my bladder) meant that when he took the tumor out, he closed the hole. He tried to put a stent in during the procedure, but he couldn't and felt that that was something that we should do in another procedure. I had some pretty painful bladder spasms after the procedure (which they had some sort of opium type suppositories which helped) and my bladder not emptying gave me a constant back ache. Thus, I opted to stay the night. I had meprogan (I think that's how it is spelled) as a painkiller for about a week after then I went to Loritab. I was hurting that day and I hurt for the next few days, but generally the pain subsided and I laid off the pain pills.

I kept the foley catheter in for about 5 days. My uro also wanted to see me in 5 days. I had an IVP done to see if there was any flow from that kidney and there wasn't, so I had to get a nephrostomy tube put in and a stent (but that's another story for another board topic, lol). I found the foley to be very uncomfortable when I tried to move (it always seemed to tug the wrong way) and removal of it burned really really bad. After removal, I also had trouble urinating b/c I was passing tissue and about a week or two later I was urinating scabs. All normal but not too comfortable. I also developed an infection down there, but that's also another story for another day.

I guess what I'm saying is that everyone's experience is different. Mine wasn't helped by the fact that before all of this started I had never spent a day in the hospital, never had an IV, etc. I wish your friend the best of luck. If you have any specific questions about my condition, please feel free to ask.

"I am third."
-Gayle Sayers

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11 years 8 months ago #4525 by wendy
Hi Karen,

Yikes! A 3 hr drive after a TUR sounds kind of tough to me...can't you get a hotel and spend the night?

Pathology might take a week. IF the doctor has a lot of experience with bladder cancer there's a chance he can tell by looking at it if it's an agressive invasive type of tumor or a superficial one. That's not saying he's give an opinion without the path report, though, and maybe he shouldn't anyway (what if he's wrong?).

I'm sorry you lost your husband to lung cancer, my condolences. I'm glad you find this board helpful, I know the lung cancer community is very well organized.

All the best to you and your friend,
Wendy

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11 years 8 months ago #4473 by Mike
If they do that then all that is required is to empty the bag and it will be bloody that is normal after the TUR. But I suggest he get back over to Hospital to get foley out you can do some real damage there taking out if you don't know what your doing. But still after it comes out you need to monitored on urine output to make sure the kidneys are working ok. Good Luck, Joe

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11 years 8 months ago #4470 by karhart
Thank you so much, Rosemary and Joe for the quick replies. He is having this done at a very crowded VA hospital. My husband had some of his treatment there. They were very nice but just have too many patients, not enough space. He is definately not staying overnight. I'm pretty sure he told me he would go home with a catheter and they would show his girlfriend (not me) how to take care of it. I guess he will follow up Monday at the local VA clinic. If he is going to require more extensive treatment I am going to encourage him to go to Moffitt Cancer Center, which is right across the street. That is what my husband ended up doing. My friend is on Medicare for disability so he could do this. What I told my husband was he was freeing up space for another vet who did not have other options like he did. He received a level of care that I know he would not have had at the VA hospital. I don't know how long it will take for him to get the pathology. Can they tell while doing the procedure anything, or does it all have to come from the lab? Thanks again.

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