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Brand new here, with a stupid question.

9 years 7 months ago #30252 by Patricia
Star...a great uro/surgeon in St. Louis Dr. Adam Kibel
http://www.siteman.wustl.edu/DoctorProfile.aspx?memid=932&Type=Patient
Pat

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9 years 7 months ago #30251 by StarraeAday1
I really appreciate everyone's advice, truly. I will work on getting a copy of my path report next week, and will update with it. I'm in the St. Louis, Missouri area and there are many large hospitals and cancer centers here, so that shouldn't be a problem. My real problem is that I will be losing my health insurance at the end of this month due to job loss. We're working on getting me on my husband's insurance, but they're dragging their feet. I have every intention of getting a second opinion, but I really need to move on it to try to get something done before the end of the month. I've got this forum bookmarked, and will continue to read and ask any questions I may have. I think it's great that a community like this exists so that we can lean on each other. Thanks again. :)

Starla

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9 years 7 months ago #30250 by Patricia
Star.....wow 27..you're right...thats very young. How much arsenic in your drinking water?
Anyway...first of all..get your path report and tell us exactly what it says...Stage and grade...that determines treatment. And second of all protocol for any cancer of the bladder now says get a repeat TURB in 6 weeks to make sure all margins are clear..otherwise they seed. Its also a good idea to get a second opinion now. If you are near a major university or cancer center set it up. They will want your pathology reports and slides and the hospital will comply with that request. Let me know where you are and i can recommend a place or uro/surgeon.
Just treat this with due dilligence and hope the second opinion agrees with the first.....be safe rather than sorry. If your uro is in an office he doesn't see much bladder cancer.
Prostate the big cash cow.
Pat

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9 years 7 months ago #30246 by mmc
It sounds like you "had" cancer that has now been removed. 27 is quite young but it does happen (just rarely).

The "watchful waiting" is typical in your situation and the schedule for cystos is also typical.

It is something that you are going to have to keep after for the rest of your life so while you most likely don' t have cancer anymore, it is going to be a part of your life.

Let your family know how you feel about the "glass" treatment.

The recurrence rate for bladder cancer is very high so that is why they will want to keep a close eye on things. Depending on if it comes back and if it stays low grade, the treatment plan can vary. If it ever recurs at a higher grade, you will want to get to a major bladder cancer hospital for treatment.

Best of luck with all of this.

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 7 months ago #30245 by Nix
Hi,
Welcome to our site. There is an abundance of information, and people that have gone through exactly what you are at this time.
First, don't ever feel there is such a thing as a "dumb question".
The word "cancer" is always received with fear and shock, but after getting some of your questions answered, you will have a good picture of what bladder cancer is and how to research your particular path.
I would suggest you get your pathology report. Do you have Ta Papillary cancer or is it T1, T2, T3? How big was the tumor? All this is very important to plot out the next step. I would also suggest a second opinion and send your pathology out for a second reading. It is very important that your Uro removed all the margins of the tumor.
If indeed, it comes back as a papillary cancer, usually a close watch, because bladder cancer can return, so a cysto every 3 months for two years and then if there isn't any recurrence then you move to 6 months and eventually once a year is standard protocol.
Learn as much as you can about bladder cancer and be your own advocate. You will find a wealth of information on this site, and also very knowledgeable people to help you through this.
Here is a website that can explain some of the question you might have: http://www.oncolink.org/types/article.cfm?c=21&s=66&ss=768&id=9464&CFID=25209248&CFTOKEN=25861086. If it does not link, copy and paste.
I am sure others, more knowledgeable than me, will answer your post.
Take care,

Nancy

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

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9 years 7 months ago #30244 by StarraeAday1
Oh, if it matters, I'm a 27 year old female and wondering how the h*ll this happened to me. :(

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