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Improper bladder cancer treatments costing lives\"

7 years 4 months ago #38736 by Nix
Cynthia,
I guess I was one of the "lucky?" ones. When I had blood in my urine it was a Saterday morning. So much blood I went to ER. The Dr did a sonagram, and bingo, you could see three superficial tumors.
Your right, I heard from several Medical Professionals that "if you have to get cancer this is a good one". Really???
I did go back to the ER to thank the doctor who investigated to the source of bleeding, instead of saying it must be an infection.
My brother was dx'd with bladder cancer two years earlier, but I was still shell shocked. On the other hand I had a "heads up" on what to do, and where to get info. I found this site for him, :) his doctor treated him with antibiotics (three cycles) before sending him to a Urologist.He had to get a neo bladder right away. It has been 7 years for him - he is doing fine - I went the BCG route (since it was Ta then CIS a year later and 4 years (so far) for me. (thank heavens for the three month check ups)
Thanks again to everyone who contributes to this site!
Nancy

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

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7 years 4 months ago #38733 by Cynthia
This is a subject near and dear to my heart. There are very few subjects that when dealing with bladder cancer where more lives could be saved. Many people face delayed diagnosis due to primary care professionals missing the signs and symptoms and putting the pieces together in a timely manner and then many face improper treatment.

If you ask most medical professionals about bladder cancer and they will tell you that it is a disease of older men and if you have to get a cancer it is a good one to get. Because they are taught half truths they do not look for bladder cancer in a 45 year old woman or a man in his thirties. Because it is not a top of mind cancer they just do not seem to go the extra mile bladder cancer sometimes takes to diagnosis. Because they think it is a good cancer they do not always take it as serious as they would if they knew the whole story.

I believe that I read once there are over 600 types of cancer so it is not to be expected that every doctor know a lot about each one. But one would think that the top ten would at least be part of what was drummed into them. Urologists that do not follow the AUA Clinical Guidelines without clinical reasons should be worried about being accused of not doing due diligence.

(http://www.auanet.org/content/guidelines-and-quality-care/clinical-guidelines.cfm?sub=bc 2007 reviewed 2010)

One of the reasons this website was deemed so important was that lives can saved by information. If the only take away someone that is newly diagnosed gets is that they should get a second opinion form someone who specializes in bladder cancer then we are doing our job.

This is a subject that our board of directors is very aware of and we are seeking ways to change this so we will see the day that you will read about how bladder cancer survival rates have sharply risen due to better practices and awareness.

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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7 years 4 months ago #38731 by Nix
This appeared on CBS News Friday evening 7/29/2011.
I was surprised, so many patients are not given the correct treatment for bladder cancer.
This site is such a help to the "newbies", I think doctors should tell all their patients about bladdercancersupport.org in the beginning!
Below is the link:

http://www.cbsnews.com/stories/2011/07/29/eveningnews/main20085671.shtml

Please copy and paste if it isn't a working link. :laugh:

Nancy

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

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