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I Feel So Stupid...

1 year 6 months ago #57376 by Alan
Hopefully others will chime in as I have not had to have a diversion. As you scroll to invasive threads there are some discussed there. The thing I have learned is the vast majority adapt and accept whatever diversion they choose. As I am still pretty active at 67, golf, water sports. I personally would opt for one of the internal options because of that. Sometimes it is not an option however, and sometimes when they are in surgery they have to change the plan.

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.
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1 year 6 months ago #57375 by Ange
I am ditto with you, even at a top notch bladder place. I finally decided on the ilealconduit conduit after much research. I do not think it is good idea to not have to worry about complications. My surgery is June.
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1 year 6 months ago #57374 by Shmoops
Alan,

Thank you so much for the response. I do work at a University that has a top Urology department. I will receive a robotic, nerve sparing, prostatectomy, yet the surgeon is pushing a conduit (pee ostomy) over a neobladder. He states that it is an easier surgery, faster recovery, with far less complications. I am relatively young for this surgery (40), and my fiancé' is pushing the bag for my safety, but deep down I desire the surgery with a chance of normality. I have a month to decide.

Would love to hear about neobladder success stories!

Thx again!

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1 year 6 months ago - 1 year 6 months ago #57373 by Alan
Welcome, and sorry why you are here. I am not going plow over the past, we all have our stories and mistakes in life. You already know this is beatable and treatable.

The advice I am sure most would make is get to a top notch bladder center, even if out of network. This is the rest of your life in balance. What area of the country do you live? Perhaps someone will have a good center... a teaching hospital or university setting to recommend. This surgery is grueling and you want someone that has done MANY... averaging 25-35/year. Too many see mostly prostatic issues and not enough bladder. Also, if your surgeon is pushing for the external bag is that HIS major or only expertise? Sometimes that is a reason.

I am posting a good summary of the types of diversions that many of us have bookmarked: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion
The hyperlink does not work so copy and paste.

While we are not doctors, we do try and listen and try to help as questions arise so continue as you go.

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.
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1 year 6 months ago #57371 by Shmoops
Hello,

I was recently diagnosed with bladder cancer, and will have my bladder, prostate, and surrounding lymphs removed soon.

It all started when I urinated blood ... a lot of it... one night at work about 1.5 years ago. I happen to work at a hospital as a medical scientist. When this first symptom occurred, I immediately excused myself from work and went downstairs to the ER. Naturally, they wanted to take blood samples and send them to the labs for testing. However, I objected about using my name as I work in the very lab that they will send my blood. I also know and went to school with people in all adjacent labs. Hematology, Chemistry, Microbiology, Immunohematology, Immunology...I know employees and/or have supervisors in each of those labs. They wanted to send my samples there, yet I had no clue what was wrong with me.

As a clinical scientist, I know that we are often familiar with a person's diagnosis based on testing even before the physician. I was scared that my diagnosis would be professionally embarrassing or reputationally harmful...as in, STD or similar. I simply requested that my name be masked from the sample (a common practice for VIPs that seek medical help, i.e.: political figures). My request was denied. I waited hours to speak with an executive clinical coordinator, but he denied my request as well. I was denied medical attention with a masked name, and told to seek help elsewhere if I wanted to remain anonymous.

I went to another ER, with no professional connections, who then ran an MRI. All seemed Ok as were basic labs, but I was recommended a follow up with a Urologist and to have a CT scan. I called my insurance provider to determine the cost of seeking this consult outside of my employer, and was told, "Seeking medical treatment outside of your employer would cost you thousands of dollars and would be foolish". So I didn't seek a Urology appointment due to potential professional embarrassment, and a foolish hope that it would all go away.

Well, it went away. I stopped peeing blood for a bit, but it came back a few weeks later. It would last an evacuation or two and be gone for weeks. This went on for a year with the hematuria slowly getting worse and lasting a bit longer. The symptoms then, after a year, advanced rapidly. I was peeing black flakes of material (skin?), and pushing out clots. I was so distraught and desperate that I finally caved and scheduled a Urology appointment at my work. I swallowed my pride and potential embarrassment, and allowed my samples to be tested by the very people I work with daily.

Long story short, I'm scheduled for surgery in one month. Of course, everyone at work knows I have cancer. I lament that this wasn't caught immediately, and I feel angry that my masking was refused as well as my pride that prevented me from allowing peers to diagnose me. I wish things were different and I feel so dumb.

Now I have to choose between wearing a piss bag, or getting a neobladder that may or may not work correctly. My surgeon is pushing the bag as the better option. I have no clue which to choose.

I'm 40 btw, and could use some advice. Thanks for reading.
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