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Hi i\'m new...and i\'m scared

11 years 5 months ago #22788 by dhqdizz
Wow thank you.
He made me feel like i was overacting but i keep talking to my husband about it and the more i think about it and the more i read i do really want a second opinion.
I just called this morning to make an appointment on base to ask my primary doctor about it. So wed I'll know more.
I have another appointment with my Uro on Tuesday but its to do a test with my bladder to see how much pressure my bladder can hold...
Does bladder cancer ever cause incontinence? i went from just having UTIs to having to go the bathroom every hour to thirty mins...and some times i wouldn't make it...but yet at the same time it wasn't a lot.
My Uro gave me the impression that the cancer can't cause it so that's why he's doing more tests.

Thank you all again for this.
I just told my family the other day and so they took it hard but yet they are very caring and surprised me with all their advice and just letting me know that it'll all be ok.

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11 years 5 months ago #22785 by Patricia
Drs. Dinney and Grossman are top Genitourinary specialists at MD Anderson
http://www.mdanderson.org/departments/bladderSPORE/dIndex.cfm?pn=CB17D2D1-8B38-11D5-813100508B603A14
Wow....i hardly know how to respond to this doctor? First of all he removed what he thought was a cyst.......?????? And he did it in his office. He could not have possibly gotten any muscle tissue for pathology ..it would have been too painful. It is the gold standard right now to have a second TURB in a hospital setting within 2 to 4 weeks from an initial TURB to get residual margins and restaging. Its really imperative that you seek out the finest in bladder cancer....it really is a specialty especially with females. It is worth the time and the travel if your insurance will allow you to go to MD Anderson.
As for the CT scan producing more cancer in your body.....well if you fly from say Los Angeles to NYC you'll get about as much radiation on the airplane.
You deserve better than what you're getting..........Pat

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11 years 5 months ago #22784 by Cynthia
Brooke,

You are about six hours from one of the best places in the world for bladder cancer M. D. Anderson. With your age it would be worth your while to hear from the best that you are on the right road. I am sure someone will chime in with a particular Urologist but none of them would be a bad choices that are on the team there I would think.

http://www.mdanderson.org/diseases/bladder/

The University of Texas Health Science Center at San Antonio's is about three and a half hours from you they have a staff that specializes in bladder cancer and are listed at the following link with their contact information. I do not know of any of them personally but maybe someone here could comment.

http://urology.uthscsa.edu/patient_appt.html

Please keep us updated on how things are going and what you do.

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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11 years 5 months ago #22783 by eddiek
Hello Brooke,

I'm Cynthia's husband Ed. This is just a short post to say welcome; wish that it was under better circumstances. Hopefully, either later tonight or tomorrow, some of the users will provide their thoughts on locations for a second opinion. You indicated that you are currently in Texas, if your husband is in the military, it might be Fort Bliss.

MD Anderson is one of the top cancer facilities in the country. Given that Texas is a hugh state, it may be a good distance from where you are located, but it's at least in the state. It sounds like you are on the correct path by checking with Tricare regarding their policy about second opinions.

As I said above, hopefully before not too long you'll have further information from some of the other users. I would just like to also mention that on Sunday evenings at 8:00 p.m. (ET) we have an open "chat" that's a great way to ask questions in real time from some of the other survivors and caregivers.

Please keep us posted on your progress and keep asking questions!


Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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11 years 5 months ago - 11 years 5 months ago #22782 by dhqdizz
Thank you guys for this info.

My doctor was just doing a test to look in my bladder to make sure there was no blockages or stuff like that.
he was about to pull the camera out and he goes "well wait there might be something here" he called it a cyst...he took a biopsy of it.
I found out later when the test came back that that the biopsy was the whole tumor...but he didn't take the surrounding tissue and that's what makes me mad...how does he know its all gone?
I asked him to get a CT because maybe i'm over reacting but could my bladder cancer traveled from somewhere else in my body? Cancer strongly runs in both sides of my family and i do know i have a cyst in one of my breasts.
He says that because the tumor was so small and that its Phase One Non Invasive and that I'm 19...it'll put too much radiation in my body and that basically I'd get cancer somewhere else he said.

My husband is military and so im very lucky to have Tricare...I'm making an appointment to talk with them to ask about a second opinion.

Also i don't know if it had anything to do with the cancer...but i was also diagnosed with Fibromyalgia 6 months ago...But my Urologist said that all my UTI problems could be neurological...and so i'm wondering if its all connected.
Thank you all for answering my questions. :)

Oh an also i live in texas in San Angelo...and we are very limited with doctors...its not a very big town.

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11 years 5 months ago #22779 by Patricia
Your doctor won't allow it? Well that sure scares me right there. Most doctors with a diagnosis of cancer will not discourage a second opinion. Size of tumor means nothing...whats important is that he did a hospital procedure called a TURB and removed not only the tumor but part of the muscle for pathology. As Cynthia has said and Bali...let us know where you are and we can advise you of the better bladder cancer specialists in your area.
Pat

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