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34 year old newby in Seattle

12 years 1 month ago #12976 by ale53
Hello all-

Had my TURB today and it went well! Better than I had imagined. Wheeled into surgery at 2 pm and heading for home at 4:15 pm.

As I was waking from the anesthesia I started rubbing my knees together, trying to tell if I had a catheter or not. Thinking back I feel silly that was my first concern. I think the first thing I said to the nurse in the recovery room was "I feel like I really have to pee, really badly" then "Do I have a catheter?" The answer was no. So I ended up not getting the catheter afterall.

Since being home I've been drinking lots and peeing lots. I had the constant intense sensation of needing to go for about the first 3 hours but that has faded as of now. Intense burning during urination during the first couple hours. Passed a couple little clumps of white tissue (2cm or so, doctor said that it is probably tissue sloughing off from the cauterization sites). No blood clots. Urine is only faintly tinged pink. I'm having much less pain during voiding at this point compared to the beginning. Curious how things will be tonight and in the morning.

Doctor took the tumor out and then took biopsy samples from four other sites in the bladder (not because they looked suspicious but to double check, I guess?).

My doc called me at home tonight to see how I was doing. I know I shouldn't be surprised but I was. Happy that he is checking up on me.

We should get pathology results back next Wednesday (or Thursday or Friday). I plan on calling his office Wednesday afternoon to check in on that.


Rosie- Prior to surgery I talked with my doc. He said the tumor is near but not too close to the orifice. He said he would definitely get it all. Afterwards, he said no stent was needed. The tumor was on a single fine stalk. I am satisfied with his response for now but will bring it up again when we discuss the pathology results.

Rosemary- Thank you for the kind words. I too have been surprised (and a bit overwhelmed but in a good way) with the emails, cards, calls from friends and family.

Melodie- I got your message! Thank you for sharing your story and your willingness to answer questions. This forum and website have been absolutely a God send. I had my TURB done at Swedish Medical Center on First Hill. My uro is James Porter with the Swedish Urology Group. I've been impressed by him (both knowledge and demeanor). I'll check in with you about your experiences at UW as that is where I'd head for a second opinion.


I realize this may be the first step down a long road, but I'm glad to be done with it. Now the waiting begins...

I'm off to bed with a heart filled with relief, thankfulness for the support of this community and thankfulness for God's grace and mercy. Hopefully sleep will come easily tonight.

Best wishes,
Lynn

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12 years 1 month ago #12975 by Melodie
Lynn,

Sorry I didn't respond to this earlier...my internet service was down for four days and I have so much catching up to do on the forum. Anyway, guess by now you have gotten your TURB out of the way. I will be interested in where you had it done as I too am from the Seattle area. I will send you a PM with my phone number if you should like to call me.

I had my TURB done last March by a urologist in Edmonds. He did a cysto. on a Tuesday and had me at Stevens Hospital two days later. It was suppose to be day surgery but when he did the TURB he was not able to get all the tumor, said it was muscle invasive, very frankly told me that I would need to stay over night so they could get more x-rays/scans to ensure it had not spread, and recommended four rounds of chemo and bladder removal.

I was not at all mentally prepared for that kind of news. I was sent home with a Foley catheter although I had no pain nor saw any blood...his procedure was to keep the catheter in for five days. Well, having a bag of urine fastened to my ankle during the day for five days and the night bag was more than annoying to me but I survived. Shortly afterwards, I found this website and what a blessing...I hope you will visit the forum often as it has a wealth of information plus encouragement and moral support. I don't know what I would have done without these wonderful people.

I later had my chemo done at Skagit as that is close to my home but had my surgery done at UW in late July. I am 57, have an Indiana Pouch and am willing to answer whatever questions you might have. Take care. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 1 month ago #12933 by Rosie
Lynn, It is prudent to check with your doctor concerning his plans for resection with your tumor so close to the ureter orifice. Please let me know what he indicates. Lynn, allow yourself to feel this shock of this diagnosis but also realize some tremendous life changes to your advantage will result eventually. Letting others in on what is happening in your life at this time brings some interesting insights depending on their reactions. At least that is what I found to be true over these 7 plus years. I think anytime someone is diagnosed with a shocking and unexpected medical problem for themselves or a loved one, they contemplate life. I found myself, of course in shock at first and worried about being disfigured, sick, in pain or dying but beyond that pondering how I might enjoy whatever remainder of my time left to the fullest. When faced with a possible shortening of the life I knew things that were put off until some future time became more focused for present time. Life became more of a present and less of a promise of things to come. I learned from Words of Wisdom: Joy does not come from what you are doing, but rather from your thoughtful presence while you are doing it. Therefore, any activity can offer joy. If I had a bladder cancer diagnosis at your age of 34 rather than at my age of 56 , I would have come to being my true self sooner. Rosie

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12 years 1 month ago #12919 by Rosemary
Lynn,j

I can tell that you are going to do fine and that you will handle this in a most graceful manner.

Sometimes, though, it is a hard subject to talk about, especially when it concerns yourself.

I was really shocked after my first TURB at how many phone calls we got during that first week. It seemed like I would just shut my eyes and be drifting off into some much needed sleep when the phone would ring and jolt me back awake and into the world of reality. I'm glad my Mom was with me. She caught most of the calls for me.

It gets easier, Lynn. It's been 2 years for me since Dx and I'm glad that initial emotional trauma is behind me. I handled it better than I thought that I would.

Take care and keep talking.

Your new friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 1 month ago #12915 by ale53
Rosemary-

I'm doing okay with wanting to be open with people. I think that it is good for me to talk about it. It helps me to frame how I really am feeling about this situation. It is just I feel like I have no graceful way of delivering the news.

So far I've been blessed by the responses I've received from people. Genuine concern and offers for help. Only one offer of some magic juice blend that will cure me.

I guess I am still struggling with this being a big deal but not wanting it to be a big deal. Not sure if that makes sense. I guess I want people to know what is going on but not freak out over it. But then again I don't have control over how people react, that is their decision.

With thanks,
Lynn

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12 years 1 month ago #12903 by Rosemary
Lynn,

I get the feeling that you would rather not be so open about your cancer so I didn't really feel that I would be much help with this question. I am like Connie, I don't mind people knowing, family or strangers. But, I would rather that people not define me by cancer, so if they ask the questions, I answer politely and then keep on moving.

Connie is right, people have a tendency to be morbid and to sometimes get into your business, but I found that most initial concern from friends, church members and co-workers (oh, an lots of family from all over the country) was genuine enough.

My experience on the whole, was that it did me good to talk about it to people. There were some who helped relieve my mind, and some who did not help so much.

Anyway, we are all different in how much of this experience that we want to share with others.

Best regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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