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Afraid and needing advice

9 years 2 months ago #31691 by Nix
Hi< I am sorry we have to meet like this, but I am grateful you found this site. just step back, take a deep breath, and learn all you can about Bladder Cancer. Education and second opinions are your best defense.
Believe me, everyone here knows just how you feel right now. It can be so overwhelming.
There is so much good information on this site, read what you can under "Newly Diagnosed".
I live in Clearwater, and was diagnosed 3 1/2 yrs ago. I went to a Uro that was recommended to my by my PC. I did go for second opinions at different times during that 2 1/2 year treatment. After 2 1/2 years I started going to Moffitt Cancer Center. They have a very good staff, and deal with Bladder Cancer everyday. If your Family Doctor, can refer you to and get you in very soon, that is exactly where I would go.
I am sure more people will chime in.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 2 months ago #31690 by mmc
So sorry to hear about your husband's situation. As far as choosing the right urologist, the key is getting to a top bladder cancer hospital with the top docs.

Patricia will probably chime in soon with the top places near you.

TURBT is the next logical step at this point but there should be a follow up TURBT within 6 weeks or so of the first as this is an often understaged form of cancer.

What often happens is that people go to their local urologist and get the initial diagnosis. The critical next step is to get to a top cancer center for confirmation of the diagnosis and treatment plan.

Most likely, with what you describe, surgery would be required to remove the bladder and prostate and that should only be done at the top cancer centers. The difference in outcomes leaves no doubt about this. You want the top surgeons who do the surgery many, many times a month.

While local urologists can do the surgery, no matter how much you like the guy, if he's not a top surgeon at a top cancer center, you don't want him to do the surgery.

It would be great if you can get your husband to sign on here to ask questions because it can take some pressure off of you. Also, we have 'been there, done that' so he can ask us anything and it may help him to know that.

Mike

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...

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9 years 2 months ago #31689 by New Diag 7
Three weeks ago on April 17th, my husband announced to me that for the past 5 months he had been having intermittent bood in his urine. I almost fell to the floor when he told me because I could not believe he would wait 5 months to deal with such a serious symptom. Of course...he always has considered himself a relative to the Rock of Gibraltar. In the past three weeks since seeing a urologist, he as learned differently. The CT scan showed a 5.4 x 5.2 cm tumor, suspicious for primary neoplasm, possibly transistional cell cancer. That was the first news where I felt my knees turn to marshmellows. The second news where my knees did finally buckle me to the floor in the privacy of a restroom (away from where my husband could see) was after the urologist did a cystoscopy last Friday, and said he needed to schedule him for a TURBT this coming Thursday, May 6th. In the urologist dictation and "Plan" it states "I fully warned them of infection, bladder perforationm ect..ect." Because of the location of the tumor the urologist states he may need to partially resect the prostate. His PSA was 0.74 but the tumor upon cystoscopy appeared to grow into and almost be contiguous with the prostate. He also notes that he saw a second tumor at the dome of the bladder. I, as his wife..am petrified for him. I love him so much. I have had to do all the research on this which makes me wonder have I done enough? Did I select the right urologist? He seems very knowledgable and has been in practice for 25 yrs. My husband says he trusts him. We are in Tampa, Florida. Does anyone have any knowledge of who are the reputable and well known urologist for BC? I feel the pressure on my back...because he is not one to do his own research...and need I say, this makes it even harder. I would just die if I was not doing this correctly. I feel like his life is in my hands because if I have chosen wrong for him...I will never forgive myself. Any advice would be so greatly appreciated. Thank you in advance.

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