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Waiting for consult-scared to death

6 years 4 months ago #45042 by CatherineH
Hello Joyce... just checking in with you. I know your appointment is coming up Friday and I hope your nerves are holding out. You've been through a long wait and I am sending you my best positive vibes that all will be well. Please let us know how it goes!

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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6 years 4 months ago #45029 by joyceb
Thank you, Alan! Of course, I am hoping for a positive outcome, but the fear won't go away. It's good to have all of this information and I am taking notes to bring with me to my consult. I will after my appointment.
Thank you again!
Joyce

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6 years 4 months ago #45027 by Alan
As others have implied, one step at a time. Yes, a cystoscope is usually done during a first consultation or follow up. Many times a CT scan will also be scheduled to rule out other urinary involvement like the kidneys. As another thread several months ago posted after all those tests sometimes there is no reason found other than some people bleed periodically. I personally know two in that category and my wife bleed several years ago passed blood for several months. They think she may have passed a stone as her ureters stayed inflamed.

Keep checking as there is lots of " experience" here and a lot of success stories with help.

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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6 years 4 months ago #45024 by joyceb
Thank you so much, Sara Ann! I have been learning so much from this site! Any and all information/advice will enable me to make informed decisions. In your experience, can you estimate, on average, how long from initial consult to diagnosis? I am on pins and needles and I have only been waiting a week!
I will definitely keep posting with updates.
Once again, thank you!
Joyce

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6 years 4 months ago #45020 by sara.anne
Joyce, Catherine has been taking great care of you!! I will just pop in with a few more thoughts.

Some uro's do a cystoscopy at the first visit, but it does take a little time and that may not be scheduled in a first visit. When you do have a cystoscopy, it is a bit like a pap smear, pelvic. Not fun, but definitely do-able, and certainly not any worse.

If they find a hint that it might be bladder cancer, you will probably be scheduled for a TURB (trans urethral resection of the bladder) which is done under general anesthesia. During this procedure, the urologist takes biopsies of all suspicious areas and they are sent to a pathologist for examination. Only after you get the pathologist's report will you know what you are looking at.

After you get a diagnosis, if it is bladder cancer, you will have some decisions to make. If you feel the need for a second opinion, you are quite close to one of the top places in the country, Johns-Hopkins in Balmer (I know, a lot of people call it Bal-ti-more, but I lived in Maryland and we called in "Balmer.")

Let us know, as you go along, how you are doing, what you find out, and what questions you may have.

Been there, done that!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 4 months ago #45015 by joyceb
Thank you, Mike! I will make note of the tests you mentioned. I had asked my GP about the aspirin and he said he didn't think that was the cause, but I am hoping that is all it is. I am trying to keep busy. We're cleaning my Dad's house out because he moved to New Hampshire to live with my sister. I had spent the last 12 years taking care of him and I guess now I have too much time to worry about myself! I made the mistake yesterday of isolating myself.
I am hoping for the best outcome, but regardless, it's nice to know that there are people out there like you and Catherine who are supportive and encouraging. Bless you both!
Joyce

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