• Posted by on July 12, 2009 at 1:31 am

    I had stage 3 tcc Bladder Cancer.I have A Neobladder since August 2004. I have to cath myself to potty and I put a Foley in at night. I am totally incontinent I know makes no seance. By that I mean I leak all the time. I had surgery after I had my neobladder surgery to try to correct this with no luck.

    My question is has anybody gotten dissability for this. There have been times where I have to not cath because the bathrooms where i am at are nasty.

    If you have how did you go about doing it. I don’t know where to begin.

    Thanks in advance

    Silk replied 15 years, 7 months ago 8 Members · 12 Replies
  • 12 Replies
  • silk's avatar

    silk

    Member
    July 14, 2009 at 7:43 pm

    HI,

    I have had a neobladder for a year now and it “flopped” to the side and I am not able to void at all.

    I self cath every 2 1/2 hours. You can use baby wipes to prep yourself before cathing and get a disposal cath for one time use only and keep the jell in your purse.

    I recently took a road trip and for the first time had to do all of this. It worked well.

    I do not know if you can get disability, I work full time, cath. 3 times at work a day and do steps each time.

    The most important “have a great attitude” and remember, you are not alone.

    Silk

  • webs's avatar

    webs

    Member
    July 14, 2009 at 7:06 pm

    Kelly Anne,

    Sorry I have not written to you before. I have been out of town for a week. I am sorry to hear that your neo is not what you were hoping for. I to have a neo that is not continent. Not to the degree that yours is though. I know how hard it is and realize that yours is twice as bad as mine.

    I wish that I had the magic answer, but I don’t. I hope that you are successful in whatever you decide.

    If you ever want to talk just let me know or email me. Sometimes it helps to know that you are not alone. (((Hugs)))

    Webs

  • gracie's avatar

    gracie

    Member
    July 13, 2009 at 8:10 pm

    Kelly Ann – Allsup has a website – http://www.allsup.com.

    Also from what I know they (or an attorney) only get paid if they win the case for you. That eliminates the need for out of pocket expense on your part to retain them. But make sure you are comfortable with whoever you choose to represent you.

    Gracie

  • melodie's avatar

    melodie

    Member
    July 13, 2009 at 6:17 pm

    I was introduced to Allsup when I was recovering from chemo/RC…I was not able to get back to work in three months and therefore was required to file for long term disability…when that happen, ALLSUP contacted me…that was the first I had heard of them…they did seem professional and willing to work hard for the client but I was wanting to return to work.

    The SS office did send me some paperwork but I didn’t fill it out because as I said, I wanted to return to work and felt I could in due time. I will tell you the paperwork was very stringent in the wording…such as: Can you get out of bed on your own? How long does it take? Can you get dressed by yourself? How long does it take? etc.

    Best of luck to you, dear. I know there are many out there who take advantage of the system, but in your situation, you certainly deserve to be classifed as “disabled”. How in the world can they expect you to work if you are continually leaking??? :ohmy: Hugs, Melodie


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • gracie's avatar

    gracie

    Member
    July 13, 2009 at 4:03 pm

    Just to add to the confusion. I was told by my doctor that one can convert from a neobladder to an Indy depending on what was done in the original surgery. Dr. Konety said he has done several of these but each person’s situation has to be evaluated individually.

    I would think that the ileal conduit is an easier surgery – but this is a big decision that would have to be weighed.

    Of course – as always – consult with an experienced, knowledgeable doctor at a major cancer center.

    Gracie

  • mmc's avatar

    mmc

    Member
    July 13, 2009 at 1:09 pm

    I was informed that you can’t change a neobladder into an Indiana Pouch so sorry about that bad information.

    As Pat said, get it changed to ileal conduit. That should eliminate the continence problems you have. No need to cath with an ileal and most people that have them are very happy with them and go on with their life without major problems.

    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.
  • 's avatar

    Guest
    July 13, 2009 at 3:33 am

    forget the disability……get a re-do from a qualified surgeon and have your neo converted to an ileal conduit……..life will be good!
    If you need help finding that surgeon let me know where you are.
    Pat

  • gracie's avatar

    gracie

    Member
    July 13, 2009 at 2:50 am

    There are attorneys that specialize in this area. The fees that they can charge are limited by law (pretty much like Workers Comp). Since the Social Security system (as any government entity!) can be daunting – it is usually recommended to have representation.

    I also have heard of a company called Allsup that do this I believe exclusively. I’m sure there is an 800 number for them. Check them out as well. From what I’ve heard they are a very professional organization.

    Also I believe that most cases are initially denied but often granted on appeal. Again – I would think that representation would help you a lot.

    Best of luck.

    Gracie

  • kittylee's avatar

    kittylee

    Member
    July 13, 2009 at 12:01 am

    Just in case anyone is viewing this thread from the disability title, I’d like to add this. My husband has stage 4 with distant mets. This site was VERY helpful when I asked (in chat) the question about disablity for his stage. The COMPASSIONATE ALLOWANCES part of the disability was super fast and immediate, about 2 weeks to approval!!! Be prepared to say that the diagnosis should result in death within 12 months, though, as tough as that may be. ( AND say that you want to apply under compassionate allowances, but only if you have stage 4 with distant mets) This may be need to be moved to Metastatic forum but I wanted to weigh in on the disability issue.


    I am a caregiver to my wonderful husband, Ron
    10/04 Multiple T1G3 – TURBT & 3 yrs BCG –
    9/08 Invasive BLC w/distant mets
    11/08 – 3/09 Gemzar/Cisplatin chemo regimen
    4/09 Radiation to bone mets
    6/09 lung and liver met progression – start ITP chemo
    10/09 My darling Ron passed away
  • 's avatar

    Guest
    July 12, 2009 at 8:25 pm

    Hi,

    Stage 3 bladder cancer IS a disability under the Social Security Admin. However, they will deny you if you are expected to be back to work within a year of Dx. In my case, I was initially denied as I had hoped to get back to work, but approved on appeal as I have not been able to return to work. Do not hesitate to get a lawyer who deals with just SS diasability. Also be sure to ask how they get paid before you sign papers.
    Good luck to you, Holly

  • julie's avatar

    julie

    Member
    July 12, 2009 at 4:24 pm

    The disability standards are very high. You would need a Doctor’s statement that your are not able to work do to the incontinence. That it substantially interferes with your activities of daily living. Most people get turned down at the first application. There is an appeal process the second appeal is a review of the application and you can provide more evidence. If you get turned down a second time the third appeal goes to a judge that specializes in ruling on disability applications.

    Are there other issues that affect your ability to work? if so include those as sometimes it is the combination of factors that may gain disability when one of them would not.

    I don’t know the statistics on incontinence but i think it is high. The Doctor would need to explain why your situation is more disabling. Also your medical records will be requested and they need to substantiate your claim.

    So your first step is to consult your Dr. to find out what they think about your ability to work.
    Julie


    Volunteer Coordinator
    ABLSC
  • mmc's avatar

    mmc

    Member
    July 12, 2009 at 1:02 pm

    Kelly,

    I’m not sure about the disability claim portion of your question.

    However, it seems that you may want to see if your urologist can change your neobladder to an Indiana pouch or some other urinary diversion so you don’t have this problem. That way you won’t be in the disability situation at all.

    Your posting will most likely get moved to another section of the web site as this section is usually for posting links to published articles about bladder cancer. Once it gets moved to someplace like “Invasive”, there is a probability that more people will see it and be able to respond.

    Best of luck!
    Mike

    P.S. Your uroligist should know if people have been able to successfully claim disability for your situation. Most (if not all) disability claims require information from a doctor.


    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.

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