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  • Dad Daignosed with BC

    Posted by on March 20, 2009 at 1:29 pm

    Two Weeks Ago:

    My dad had blood in his urine for a few months and finally went to the ER after not being able to pass some blood clots. Four days irrigation, he had surgery. The surgery removed the 5 cm tumor he had attached to the wall of his bladder. The doctor told us he took a biopsy and would get back to us ASAP w/ the results.

    3.11.09-

    2 weeks later and found out that he does have cancer on the wall of his bladder and is invasive. The doctor said he would like to do the neobladder, and didn’t mention chemo.The doctor gave him up to 3 months to schedule the surgery.

    He was supposed to go back 3.18.09 and decided to cancel his surgery and try to radically change his lifestyle and eat better and try to treat the cause of the cancer. Even though his efforts are positive, it is not going to cure the cancer that is already in his bladder. I am trying to educate myself on bladder cancer and the neobladder, so I can show my dad how important it is to have this surgery. (I am working on obtaining his file, to find out exactly what stage etc. the cancer is)

    The next thing is he doens’t have insurance, but he is a vet, so he could be treated by the VA and head of Urology at UC (University of Cincinnati). I believe Dr. Bell would be his surgen (I have yet to do research on him).

    My first problem is informing my dad how important it is to have the surgery and him agreeing to it. The second is, finding a surgeon who we can trust and with the VA I think Dr. Bell is the only option he has.

    I am just seeking solid cases of men who have had the neobladder, so my dad can see that the surgery it what he needs. I am so scared that if he doesn’t have the surgery, the cancer will spread and then he has no options. I know that he might be in a state of denial about the cancer, but I am running out of options on how to convince him he needs this surgery.

    I am only 24 and my dad is only 57, we have a full life ahead of us and I want my dad to fight this awful disease.

    JKolbinsky replied 14 years, 12 months ago 13 Members · 46 Replies
  • 46 Replies
  • jkolbinsky's avatar

    jkolbinsky

    Member
    February 26, 2010 at 2:55 pm

    JKolbinsky wrote:

    stevegrimes14 wrote:

    I just read the postings for your journey. I too am a vet with BC. Was your father in Viet Nam? I notice no new posts, I hope and pray you both are doing well.

    Steve

    Yes, he was in Viet Nam., Mike moved the post the other day. He did have his surgery on Feb 1st. I’ll find the link to the new posts :)

    http://www.bladdercancersupport.org/index.php?option=com_kunena&Itemid=114&func=view&catid=5&id=29987

  • jkolbinsky's avatar

    jkolbinsky

    Member
    February 26, 2010 at 2:54 pm

    stevegrimes14 wrote:

    I just read the postings for your journey. I too am a vet with BC. Was your father in Viet Nam? I notice no new posts, I hope and pray you both are doing well.

    Steve

    Yes, he was in Viet Nam., Mike moved the post the other day. He did have his surgery on Feb 1st. I’ll find the link to the new posts :)

  • Stevegrimes14's avatar

    Stevegrimes14

    Member
    February 26, 2010 at 12:45 am

    I just read the postings for your journey. I too am a vet with BC. Was your father in Viet Nam? I notice no new posts, I hope and pray you both are doing well.

    Steve

  • DougG's avatar

    DougG

    Member
    January 18, 2010 at 10:25 pm

    Jessica,

    You are a brave and impressive young lady. My prayers are with you and your family. I hope that everything goes well.

    Anita


    Anita
    Forum Moderator
    Caregiver
  • 's avatar

    Guest
    January 18, 2010 at 7:51 pm

    Here’s some phone numbers…worth a try.
    http://www.iupui.edu/~urology/Providers/koch.htm
    Koch, Michael (317) 274-7338

  • jkolbinsky's avatar

    jkolbinsky

    Member
    January 18, 2010 at 7:44 pm

    My Aunt works for UC and doing as much research on Dr. Hamidinia as possible. Its just hard, b/c you can’t really request a dr. They said 5 hrs as long as everything went smoothly and the uretha was not damaged at all.

    How would I even attempt to get ahold of him.

    I tried to get my dad an appt in Nov to the VA in Indy and their next appt was Jan 20th. So it was over 2 months just to get in and in order to schedule a surgery, you have to at least have a consult and they don’t have a waiting list or anything along those lines.

  • 's avatar

    Guest
    January 18, 2010 at 7:41 pm

    well my bet is on the 8 hrs if they’re doing pathology in the room……thats a new one. And a very long surgery. I know for a fact that Dr. Koch at Indiana does this for the VA in Indiana which is right next door. His time on a neo is 3 l/2 hrs. I wonder if you called him personally if you might get a different answer if you told him the circumstances?
    I wish they could have done that for me when i had my breast cancer lumpectomy and sentinel node biopsy…but it was not precidented.
    Pat

  • jkolbinsky's avatar

    jkolbinsky

    Member
    January 18, 2010 at 7:33 pm

    Well honestly we really don’t have a choice. He is the dr. that is performing these surgery’s right now at the VA and my dad has chosen to wait 10 mths to do anything about his cancer, so we’re lucky they can got him in at all. Even if we didn’t want Dr. Hamidinia we would then have to start from the beginning and go to a different VA. Unlike private health care, my dad doesn’t have the option to pick and choose, which sucks.

    According to them they said the would have 2 patholigists in the room to test the nodes prior to finishing up.

    The surgery is scheduled to take 5-8 hours.

  • 's avatar

    Guest
    January 18, 2010 at 7:29 pm

    ask how many neo’s he’s done. Ask if some of his patients can contact you.
    They’re going to inspect nodes on the spot? hmmm…my path took 9 days and i was at the #2 urological hospital in the country. Won’t that make for a long surgery? I mean those nodes hide in fatty areas and are not readily seen unless you are doing it robotically or laproscopically and the screens enlarge the operating area 10 fold from what the human eye can see.
    not trying to be a naysayer…just want the best for your dad.
    Pat

  • jkolbinsky's avatar

    jkolbinsky

    Member
    January 18, 2010 at 7:16 pm

    Sorry Plan A will be the neo, depending on if there is any damage to the uretha.

  • jkolbinsky's avatar

    jkolbinsky

    Member
    January 18, 2010 at 7:15 pm

    As of right now Dr. Hamidinia is scheduled to do it. We can’t go to Indy, because he’s waited to long. It would take at least a month to get an referral to Indy and then at least 2-3 weeks to schedule the surgery. Right now he has to focus on time. Dr. Bell did the original tumor removal last March, but according to Dr. Caillat (younger doctor) he is semi-retired due to a hand surgery. I believe though, Dr. Bell might be participating to a certain extent, but not performing the surgery.

  • 's avatar

    Guest
    January 18, 2010 at 7:09 pm

    which doctors Jessica? Donovan, Bell, Bracken? Any of the above? Are they suggesting ileal conduit or do they want to play and do a neobladder? I know for a fact they have not done many neo’s. I live here!
    What happened with the Indiana VA where they have the expertise of some of the top uro’s like Koch?
    Just wondering but glad he’s consented to surgery.
    Pat

  • jkolbinsky's avatar

    jkolbinsky

    Member
    January 18, 2010 at 4:10 pm

    Yes, they are taking lymph nodes and biopsy them on the spot as well. UC surgeons perform the surgery, but it’s just done @ the VA, kind of weird how all the works.

  • mikeg's avatar

    mikeg

    Member
    January 18, 2010 at 4:04 pm

    Great News. FWIW, as a reminder, it’s important for the surgeon to take as many lymph nodes as possible to check for any spread of the cancer. Many studies have show links betweeen the amount of nodes taken and later prognosis and treatment. I don’t know how/if the Veterans Hospital does this, but you might inquire about it. I agree with Mike, life is fine after surgery. recovery is hard, but the memory soon fades as the rest of your life takes over.

    Michael Greenberg


    Michael
    Age 58
    Stage T2-T3, muscle invasive
    Married to Eileen
    2 sons, ages 20 and 23
  • jkolbinsky's avatar

    jkolbinsky

    Member
    January 18, 2010 at 3:42 pm

    Update: one of many to come

    Turns out we did get a new CT scan and on Thursday sat down witha Urologists and my dad has finally realized that surgery is his only option to long and healthy life. His sugery is scheduled for Feb. 1st at the VA in Cincinnati. It is our only option due to his lack of health insurance, but honestly we are feeling very safe under the hands of the dr and their assistants.

    Now is the time to pray that even though they don’t see anything on the CT scan outside the bladder, just praying that once they get in there the Patholigist don’t find anything. The doctors are very hopeful that the changes in his life have helped slow the cancer down, but now this is the best option he has.

    I along with my whole family are very worried about the procedure, the recovery, and how my father is going to cope with his new lifestyle (at least for the first few weeks). As I’ve read and talked to Mike I know this journey is going to be a long and rigerous road, but I just know and have always known that this is what will save his life. Now it’s just getting through the procedure and starting recovery.

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