CBS bladder cancer story

12 years 9 months ago #38740 by eddiek
Replied by eddiek on topic CBS bladder cancer story
Bladder Cancer Advocates Wanted!!

If anyone is interested in helping to spread the word, please contact me: This email address is being protected from spambots. You need JavaScript enabled to view it.. I've volunteered to coordinate the activities of our advocates.

You can also use the "Contact Us" feature on the website or send Cynthia an e-mail at This email address is being protected from spambots. You need JavaScript enabled to view it..

Thank you.


Ed K.

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

& Caregiver

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12 years 9 months ago #38732 by Cynthia
Replied by Cynthia on topic CBS bladder cancer story
Carla you really did not hit a nerve you gave me reason to reply. We welcome you whole heartedly and need everyone to do what they can.

Susan Korman has through money and political clout done incredible things for breast cancer and are to be used as a model for what can be done.

We are dealing with a cancer that is not a popular one to talk about and that is a hurdle we have to overcome. Besides that we have a cancer that is given very little money even though it is the fifth most common in men and the eighth in woman, more woman will die of it this year in the USA than cervical cancer, with high reoccurrence ratse and is the most expensive malignancy to treat. (Bladder cancer has the highest reoccurrence rate of any malignancy when it is non invasive but the reoccurrence rate decline following radical cystectomy dependent on stage.)

The point I was trying to make is what we are trying to build here is a community and it will take a community working to get the job done. We cannot all do the same things but it takes no money to call your local TV station or newspaper and give them the low down on bladder cancer and the American Bladder Cancers Society's contact information. That is what I meant about making noise there are half a million bladder cancer survivors in the USA and that does not count the people that care about them. Can you imagine what would happen if we all picked a week and called all of our elected officials and asked them why it gets so little attention and money once the facts are known?

I am sorry if by my post I made anyone feel that I was directing any comment at them that is not at all the case I was just voicing an opinion. Please forgive me if I get passionate about this subject but the fact is I am.

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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12 years 9 months ago #38727 by mmc
Replied by mmc on topic CBS bladder cancer story
For those who missed it, here is the link to the report: www.cbsnews.com/video/watch/?id=7374991n&tag=mncol;lst;1

If the link does not work, go to www.cbsnews.com and in the search box put "bladder cancer". You will find a video story report from last year and the one from this year and the link to the written story.

Personally, I thought it was good. It is also a good story for people who have or had bladder cancer because they kind of make it clear that we also have the responsibility. I've posted the NCCN guidelines on the site a few times. Everyone should know them and everyone should discuss them with their doctor.

Just because the doctor says you don't have to come back for 12 months, doesn't mean that is the guideline.

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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12 years 9 months ago #38722 by dieseldoc
Replied by dieseldoc on topic CBS bladder cancer story
Thank you Cynthia!

T1,NO,MO battling bladder cancer since 2005

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12 years 9 months ago #38718 by jimswife
Replied by jimswife on topic CBS bladder cancer story
Wow, this week I seem to keep touching on folks nerves. Never my intent to be offensive. Since I am very new only 1 yr of seeking info and support on this site. Since Jim, is at this point, finally through chemo and recovery I now feel as if I may be able to offer some help. So, when I read about the CBS story my first thought, since I have over 40 yrs as a mammographer and have seen what an org such as Susan B Komen Foundation has done for breast ca, I am eager to try to do something like that for BC. I am willing to work at this not just talk about it. Hence my comments. Thank you so much for the info and believe me I will print some of the flyers and will look at the costs of ordering the palm cards. Thanks for the info. I hadn't really wandered around on the site, probably need to. Thanks again for all the support from folks here and never my intent to be critical of anyone or this site. It is amazingly good!

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12 years 9 months ago #38717 by GroundedFlyer
Replied by GroundedFlyer on topic CBS bladder cancer story
The CBS story was nothing but a sound bite to make those unfamiliar with BC to go "Huh?" Maybe my treatment was better than I thought because, except for the lab tests, my uro went through the whole procedure before RC; three TURBTs, 6 weeks of BCG and scopes at each visit.

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