Home Forums All Categories Chit Chat CBS bladder cancer story

  • eddiek's avatar

    eddiek

    Administrator
    August 1, 2011 at 4:04 am

    Bladder Cancer Advocates Wanted!!

    If anyone is interested in helping to spread the word, please contact me: [email protected]. 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 [email protected].

    Thank you.

    Ed K.


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

    & Caregiver

  • cynthia's avatar

    cynthia

    Administrator
    July 31, 2011 at 10:00 pm

    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
  • mmc's avatar

    mmc

    Member
    July 31, 2011 at 8:41 pm

    For those who missed it, here is the link to the report: http://www.cbsnews.com/video/watch/?id=7374991n&tag=mncol;lst;1

    If the link does not work, go to http://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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • dieseldoc's avatar

    dieseldoc

    Member
    July 31, 2011 at 7:37 pm

    Thank you Cynthia!


    T1,NO,MO battling bladder cancer since 2005
  • jimswife's avatar

    jimswife

    Member
    July 31, 2011 at 3:31 pm

    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!

  • GroundedFlyer's avatar

    GroundedFlyer

    Member
    July 31, 2011 at 12:01 pm

    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.

  • DougG's avatar

    DougG

    Member
    July 31, 2011 at 2:06 am

    Doug and I were happy to see ANYTHING on the national news about bladder cancer! Thanks for letting us know that it was going to be on. We had a house full of company….my brother kept an eye and told us when to run into the room to watch it. It was short, but it is a start.

    Anita


    Anita
    Forum Moderator
    Caregiver
  • cynthia's avatar

    cynthia

    Administrator
    July 31, 2011 at 12:29 am

    Diesel we are always careful to let people know that this site is free and a no guilt zone. We all do what we can do even from a bed someone can spread the word or drop off flyers when they go to the doctor. When I was going through treatment and surgery we took a second morgage on our house and we were lucky we could do it. Even if you have good insurance there are so many costs that are not covered that it has to be hard for almost anyone facing any type of bladder cancer dx. I have always been careful to not say anything about raising money on the site because I feel that this is not the place for it. But it has came to my attention that many people think we get our money form the American Cancer Society or drug companies and that is not true. About a year ago I got an email from one of our users telling me that they had given a donation to the ACS because of the work we do here they were one of the people that had been helped a great deal by our site. They went on to tell me that they were doing the relay for life. These are the people that I am trying to reach. Keep doing what you do it is worth much more than money. The words of support shared here can not be brought nor can a price be put on them.


    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
  • dieseldoc's avatar

    dieseldoc

    Member
    July 31, 2011 at 12:15 am

    I wish I could give money, but am looking at filing bankruptsy. But I can still distribute flyers, and I have alot of doctors offices around here.


    T1,NO,MO battling bladder cancer since 2005
  • cynthia's avatar

    cynthia

    Administrator
    July 30, 2011 at 8:15 pm

    I am going to ask the Website Advisory Team to help us redesign our flyer and take a look at our rack card. And we will be adding a form on the site that will allow you to order rack cards for to drop off. If we had our way there would be a hand out in every doctors office and cancer center in the USA. Again money is our anchor


    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
  • cynthia's avatar

    cynthia

    Administrator
    July 30, 2011 at 8:14 pm

    The ABLCS has worked hard to get to this place for over four years. Our first priority has been to provide a place where survivors and the people who care about them have a place to come for solid information so they could make informed decisions and peer support. We are in the final stages of bring online what we hope will be the best support site on the internet. And if it isn’t we will just keep working until it is. We wish it could have been sooner but our pacing factor is always money.

    As far as getting the word out we know what needs to be done and there are grass roots ways we will be pursuing but the truth of the matter what needs to be done needs money. It is not for lack of will that our work has not gone further. We all want every person to know the signs of bladder cancer and to take them seriously.

    What we need is for every person that knows about bladder cancer to tell everyone who they care about the signs and symptoms and then make that person to promise to tell everyone they care about and on and on.

    The sad fact is that a great deal of the money that supports the ABLCS is from peoples memorial gifts. Our goal is that the day will come where the money comes from people that support this cause because they never had that memorial. A yard sale, house party or by telling Aunt Flo that no you don’t really need a new sweater to give a donation will get us a step closer. Lives’ can be saved and lives can be changed.

    None of us asked to have this to drop into our lives but with it comes the awareness that much has to be done. Not all of us can raise funds but we can tell any person who will listen about bladder cancer. We all can do something and once we do you will hear about bladder cancer everywhere. Personally I think it is time for us to make a lot of noise.


    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
  • sara.anne's avatar

    sara.anne

    Member
    July 30, 2011 at 7:21 pm

    If you look under the primary topics at the heading of the pages of our web site, under HOPE, is “Awareness Flyer.” This is available for individuals to print and distribute…and I believe that Cynthia is getting some printed professionally. HOWEVER, it is expensive to do this in bulk and the $$$$$ are hard to come by.

    I wonder what someone with no previous exposure to the topic of bladder cancer thought of the presentation? What did they get out of it? Hard to know. We are too close to it to have any idea!

    Sara Anne


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

    jimswife

    Member
    July 30, 2011 at 7:16 pm

    I agree but it is a start. For years NO BODY talked about BC at all. My wish is that we can get some sort of tri fold into all Internists and family practice doctors offices along with uros etc that talk about the need to be sure that hematuria isn’t BC. Also get info out to folks. I cannot believe I worked in the medical field for over 40 yrs and didn’t know what I do now about BC. I felt totally ignorant. It is through forums such as this that I got the info and support that was needed. Not sure how to make my wish happen but this is the 5th most common cancer and high recurrence rate and so little is known about it. WOW! Need to get our info out there somehow someway. I have been thinking about this since last year when the 20 lb sledge fell between my eyes with Jims diagnosis.

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