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

11 years 5 months ago #22816 by Patricia
Do you mean Dr. Dinney at MD Anderson? You keep mentioning Dr. Anderson and i don't know who that is?
At this point you really do need a second TURB in a hospital setting to remove margins left behind that can seed into another cancer and to get the correct pathology so you know exactly what you have. I would not even think about clinical trials at this point. What you have is probably treatable..the trials are usually for those who are not responding to traditional care.
Tests that are routinely done with a bladder cancer diagnosis are blood tests, CT scan, sometimes a bone scan, sometimes an IVP.
It is so rare for a l9 yr old to get bladder cancer unless you've been to a third world country. And believe it or not there is a relationship with blc and HPV if you've ever had that?..And some people don't even know they have had that.......
So really its just soooo important that you get with a top notch bladder cancer specialist ASAP. You just don't want to mess with this. Pat

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11 years 5 months ago #22814 by dhqdizz
Thank you so much...This is my second specialist this year and I've been having to do test for different things all year so i guess at this point it didn't surprise me but yet it did...if that makes sense. I just figured that the fibromyalgia was causing all my problems...there's not much on that disease so its hard to expect things when you don't know anything. :S

Yeah i think it'd be a good idea to travel if it means i can get a straight answer...someone who might have seen someone as young as i am.
Also i was reading that Dr.Anderson is big on doing Clinical trial research and i was talking to my husband thinking it might be a good idea...its a thought i don't know if i could afford to travel that much but at least to Houston to see him isn't bad.
I'm lucky that Tricare prime is suppose to pay for any medical that i ever need...i should never have to pay a copay. So that is nice but like i said i gotta see what they say first...if i can even go see Anderson. :unsure:

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11 years 5 months ago #22805 by balihigh
For a young person you are approaching this almost like a veteran. Yes, you must be persistant with your insurance and many times they will waive policies when they see the need.

It is good that you are reading and learning about this disease. We have all found out that we must be our own advocate. You must find another urologist as the one you have now just doesn't get it. I really hope that you are able to see someone at Anderson. Good that you are willing to travel. So many people refuse to leave their home base and that is not good.

Take care,
Nancy

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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11 years 5 months ago #22803 by dhqdizz
thank you all so much...You all have been a big help.
I really think Anderson sounds good...I've been reading some of his research articles and been really impressed.
But I'll know more Wed if i can even go that far to get a second opinion.
Even if I don't need to get a CT, i do think it sounds like i should have had more tissue removed.

Does any one know if Bladder Cancer could have started from somewhere else.
Don't they usually check the kidney's too?
He told me there was no need to... :(

Thank you all again!
You have all made me think of new questions and what sounds like needs to be done. :)

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11 years 5 months ago #22800 by sara.anne
I would join the chorus and urge you to get a second opinion and, as long as you are doing it,, go the extra distance and see someone who specializes in bladder cancer. At your age, your case is certainly not typical and you need to get the best information possible.
And yes, certain forms of bladder cancer DO cause the symptoms you described..of a very bad UTI.
Too bad you are not at Madigan at Ft. Lewis, WA. I know a great female urologist there.
As you have found out, you have a lot of good friend here!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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11 years 5 months ago #22796 by Flamenco.
Hi Brooke ,
Sorry you have had to come to this place to get the info you you need, but take advice from those who have been there. I think a second opinion is essential, even if it is only to put your mind at rest. Please keep in touch with us, everyone here is here because they want to help and point you in the right direction.
Flamenco

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