Hello folks! Seeking info, advice, opinions etc.

Gary_the_Mime
Gary_the_Mime Member Posts: 1
edited March 2014 in Bladder Cancer #1
Hi folks.
Some of you may know me. I entertain as Gary the Mime and have donated Mime Time at several ACS run/walks, Relay for Life events, and for various other organizations here in the Las Vegas area!

I just had a large High Grade cancerous tumor removed cleanly from my bladder, there was no muscle invasion.

The Dr. recommended bladder removal, but suggested that I may want to try BCG treatments first.

Your thoughts, info, opinions are greatly appreciated!

Gary the Mime (Google it)

Comments

  • goody_63
    goody_63 Member Posts: 7
    #2
    Glad to hear that the removal was a success, with no muscle invasion. My husband was just diagnosed with bladder cancer 3 weeks ago. The removed only part of the tumor because it was invading the lining and the muscle. Now we are waiting on a bone scan and CT scan to see if it had spread else where. This a trying time because the bone scan is not til the 5th of May and our follow up to the doctor on the 13th. The doctor said if he did not spread they were going to remove the bladder and make a new one if his intestines were good enough if not he needs the bag. If the cancer did spread ( which i hope not) they would do either kemo or radiation. Keeping my fingers crossed. let me know how you make out with the bladder removal. Am not sure on the BCG treatments. This is all new to me

    Lisa
  • ReeladyD
    ReeladyD Member Posts: 7
    #3
    husband is b/c survivor 7 years next month-May 18 @ 11;58pm
    My husband was 48 and had a high grade aggressive tumor stage2b n-0 if i recall correctly. No node involvement as it turned out, however the best solution was radical cysectomy and neo- bladder (reconstruction 11 hours in surgery)- The tumor had just began to invade the superficial muscle layer and due to his young age, and high grade tumor it was the best choice for recovery and survival.
    Yes the surgery was nasty, recovery was long and miserable but the end result is 7 years later @ 55 1/2 he is still riding dirt bike enduro and fishing like an old salty. he truly is like a freight train- Go with your gut feeling and the advise of a HIGHLY QUALIFIED specialist. We had surgery at the Hospital at the University of Pennsylvania, Philly, Dr. Bruce Malkowicz,Professor Dept. of Urology. He saved my husbands life.
    Don't be afraid to go with the aggressive treatment if necessary. Ultimately, the choice is -life. We were able to put it behind, but will be forever grateful.

    I havnt been to this site in a very long time, too bad chat is not available, I would like to share more info aif anybody is interested.

    Dorothy
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #4
    BCG treatments
    I've had bladder cancer and BCG treatments. No more bladder cancer (after three years). What do you need to know?

    Tom
  • Pris42
    Pris42 Member Posts: 12
    #5
    Skid Row Tom said:

    BCG treatments
    I've had bladder cancer and BCG treatments. No more bladder cancer (after three years). What do you need to know?

    Tom

    Glad to hear how your doing it makes me more hopeful
    Tom I know you were answering someone else, but I am glad I read your post. I had my tumors removed from the bladder, and the uterter and kidney checked out the were clear (to different surgerys though the second one they ended up with no cuting to do the first got it all. Just had the last BCG treatment April 07th, 2010 and this next week I have my first checkups with the cancer Doctor, and also my surgeon. The surgeon May 18th, the cancer Doctor and bloodwork the 20th. Am scared and yet hopeful of these first checkups but was afraid it might be one for coming back a lot for most of us. Hearing you have made it to three years with no return of the cancer is terrific and encouraging. Thanks. Also want to say I am so glad for for you. I am doing a relay for life next week-end and was invited recently to my first survivor dinner where I hesitated saying I didn't know if I should say survivor this early. I was told every day you live after a cancer they call you a survivor if it is 20 days or years. I was just diagnosed in November 2010 though they found the tumors in October I found out I had cancer with the surgery and biospy the 6th of November.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #6
    Pris42 said:

    Glad to hear how your doing it makes me more hopeful
    Tom I know you were answering someone else, but I am glad I read your post. I had my tumors removed from the bladder, and the uterter and kidney checked out the were clear (to different surgerys though the second one they ended up with no cuting to do the first got it all. Just had the last BCG treatment April 07th, 2010 and this next week I have my first checkups with the cancer Doctor, and also my surgeon. The surgeon May 18th, the cancer Doctor and bloodwork the 20th. Am scared and yet hopeful of these first checkups but was afraid it might be one for coming back a lot for most of us. Hearing you have made it to three years with no return of the cancer is terrific and encouraging. Thanks. Also want to say I am so glad for for you. I am doing a relay for life next week-end and was invited recently to my first survivor dinner where I hesitated saying I didn't know if I should say survivor this early. I was told every day you live after a cancer they call you a survivor if it is 20 days or years. I was just diagnosed in November 2010 though they found the tumors in October I found out I had cancer with the surgery and biospy the 6th of November.

    Good luck...
    I hope you get good results. From what I've read, if the first round of BCG treatments don't work, they usually give you a second round (yes, another 6 weeks). Sometimes I think the worst part of cancer is not the surgeries or the procedures, it's the waiting.

    Tom
  • tkutsey
    tkutsey Member Posts: 1
    #7
    Skid Row Tom said:

    BCG treatments
    I've had bladder cancer and BCG treatments. No more bladder cancer (after three years). What do you need to know?

    Tom

    Just some info/regarding bladder cancer
    Hello Skid Row Tom, My mother had blood in her urine for about a week, I was told to take her see an urologist,so I did, the sent her for test and the result of the test he said that she had some growth in the lining of her bladder, so the doctor said he was going to remove the growth, and removing the growth he siad everything went just fine.Well we go back to have the catheral removed and he tells me that he is sorry but my mother needs her bladder removed,because he burnt her bladder,he said that he would not be doing the surgery but knows of a great doctor that would perform the surgery. My wuestion to him and others should she be sent to see a specialist before making a big discission like this. I am so mixed up and confused My mother will be 75 on May 25th, she is the last surving sibbling of 8. please i need some one to talk to. Thabnk You
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #8
    tkutsey said:

    Just some info/regarding bladder cancer
    Hello Skid Row Tom, My mother had blood in her urine for about a week, I was told to take her see an urologist,so I did, the sent her for test and the result of the test he said that she had some growth in the lining of her bladder, so the doctor said he was going to remove the growth, and removing the growth he siad everything went just fine.Well we go back to have the catheral removed and he tells me that he is sorry but my mother needs her bladder removed,because he burnt her bladder,he said that he would not be doing the surgery but knows of a great doctor that would perform the surgery. My wuestion to him and others should she be sent to see a specialist before making a big discission like this. I am so mixed up and confused My mother will be 75 on May 25th, she is the last surving sibbling of 8. please i need some one to talk to. Thabnk You

    Your Mom's cancer
    I think most would agree that any major surgical decision should involve a second opinion. No doctor would take offense. A couple things to remember: 1) You can worry as much as you want and your responsibility is to support your mother. However, the decision is hers. 2) There are many people (and many that post regularly on this board) that have adapted to life without a bladder and lead fulfilling lives. I'm terribly sorry this happened to her (and you). Good luck!
  • 109339
    109339 Member Posts: 10
    #9
    bladder cancer
    My mom has had numerous tumors removed from her bladder. They grow back like weeds grow in the fields. She had treatment last summer and was clean for 3 months. She started bleeding again and had the 2 new tumors removed 3 months ago. She is scheduled again 7-7. As long as it doesn't penetrate the organ, you're good to go.
  • goody_63
    goody_63 Member Posts: 7
    #10
    Skid Row Tom said:

    Your Mom's cancer
    I think most would agree that any major surgical decision should involve a second opinion. No doctor would take offense. A couple things to remember: 1) You can worry as much as you want and your responsibility is to support your mother. However, the decision is hers. 2) There are many people (and many that post regularly on this board) that have adapted to life without a bladder and lead fulfilling lives. I'm terribly sorry this happened to her (and you). Good luck!

    Mom's cancer
    Skid Row Tom, I totally agree with you. But for me, my husband was diagnosed in March 2010, with bladder cancer and it went through the wall into his lymph nodes. He has been doing chemo for 2 months and just had a ct scan and no changes.growing yet no shrinking either. to make matters worse(he has seizures) the anti-nausa meds they gave him seizures. The PC-A never checked his chart before giving out meds. Now my concern is, if they messed up once what is to say they will not mess up again. He (my husband) is down in the dumps, has the blues, and doesn't care anymore. What is one to do to get his spirits back up?
  • dermes
    dermes Member Posts: 2
    #11
    opion
    Had the bladder entirely removed and so far I havent had any problems with the new one they put in its place. If your doctor is a good one he will tell you that if u do have it done it will take time to get back to a semi normal life though It is a very major surgery. They make have you go back after removal to see if it got into any other part of the body. As for mine they found tumors in my lungs but didnt do a biopsy and just put me on chemo my last pass on it is tommorrow. Which ever you decide remember one very important thing keep a good outlook believe me it will help you and confuse the heck out of a lot of nurses and doctors LOL
  • dermes
    dermes Member Posts: 2
    #12
    goody_63 said:

    Glad to hear that the removal was a success, with no muscle invasion. My husband was just diagnosed with bladder cancer 3 weeks ago. The removed only part of the tumor because it was invading the lining and the muscle. Now we are waiting on a bone scan and CT scan to see if it had spread else where. This a trying time because the bone scan is not til the 5th of May and our follow up to the doctor on the 13th. The doctor said if he did not spread they were going to remove the bladder and make a new one if his intestines were good enough if not he needs the bag. If the cancer did spread ( which i hope not) they would do either kemo or radiation. Keeping my fingers crossed. let me know how you make out with the bladder removal. Am not sure on the BCG treatments. This is all new to me

    Lisa

    hi
    hope everything worked out for the best
  • Fran Chandler
    Fran Chandler Member Posts: 29
    #13
    Skid Row Tom said:

    BCG treatments
    I've had bladder cancer and BCG treatments. No more bladder cancer (after three years). What do you need to know?

    Tom

    BCG treatments
    Hi Tom,
    I have had one treatment of BCG last Wednesday for bladder cancer and will have a second one tomorrow. I was wondering if they get harder to take each time? Did you have 6 treatments a week apart? I had kidney cancer in my right kidney and it was removed along with the tube,cusp of the bladder and lymph nodes taken out so it wouldn't spread in February of this year and came back to see if I was cancer free in June and it was in my bladder.Thats life!
    So very glad that you are doing great and have gone three years and pray you will have many more years to enjoy your life. Take care.

    Fran
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    #14
    Fran Chandler said:

    BCG treatments
    Hi Tom,
    I have had one treatment of BCG last Wednesday for bladder cancer and will have a second one tomorrow. I was wondering if they get harder to take each time? Did you have 6 treatments a week apart? I had kidney cancer in my right kidney and it was removed along with the tube,cusp of the bladder and lymph nodes taken out so it wouldn't spread in February of this year and came back to see if I was cancer free in June and it was in my bladder.Thats life!
    So very glad that you are doing great and have gone three years and pray you will have many more years to enjoy your life. Take care.

    Fran

    BCG follow-up
    For me, the treatments were the same. Yes, I had one treatment weekly for six weeks. Psychologically, the first one was the worst. It was a fear of the unknown, and add to it some horror stories I read on the Internet -- people having bad reactions. I guess I would describe each treatment as "uncomfortable" but not painful. The worst part was the insertion of the catheter. The actual insertion of the BCG into my bladder was painless. I experienced slight discomfort when the catheter was removed, but the discomfort was tolerable because I knew the procedure was over. The hour and day afterward (the rotisserie turns you have to do, bleaching the toilet, etc.) was just a hassle, but no big deal. I did not suffer any after effects of any treatment or the treatments as a whole. Because you're having BCG treatments, I would imagine your cancer is superficial and hasn't invaded the surrounding tissues. If this is the case, you're "lucky" and have a great chance to subdue this monster. Fight like hell Fran!

    As a side bar, I don't know how I did it, but four days after my last BCG treatment, my wife and I hopped on our motorcycles and rode them all the way to Alaska and back. The doctor couldn't believe it.
  • 1maladywc
    1maladywc Member Posts: 9
    #15
    ReeladyD said:

    husband is b/c survivor 7 years next month-May 18 @ 11;58pm
    My husband was 48 and had a high grade aggressive tumor stage2b n-0 if i recall correctly. No node involvement as it turned out, however the best solution was radical cysectomy and neo- bladder (reconstruction 11 hours in surgery)- The tumor had just began to invade the superficial muscle layer and due to his young age, and high grade tumor it was the best choice for recovery and survival.
    Yes the surgery was nasty, recovery was long and miserable but the end result is 7 years later @ 55 1/2 he is still riding dirt bike enduro and fishing like an old salty. he truly is like a freight train- Go with your gut feeling and the advise of a HIGHLY QUALIFIED specialist. We had surgery at the Hospital at the University of Pennsylvania, Philly, Dr. Bruce Malkowicz,Professor Dept. of Urology. He saved my husbands life.
    Don't be afraid to go with the aggressive treatment if necessary. Ultimately, the choice is -life. We were able to put it behind, but will be forever grateful.

    I havnt been to this site in a very long time, too bad chat is not available, I would like to share more info aif anybody is interested.

    Dorothy

    blader cancer
    I just had a bx done in my bladder. How did you find our you had bladder cancer. I have such pain in my side . I have bone cancer mets from breast cancer. I pray that it is not cancer.
    So glad you are doing so good. Life after cancer is what you make it. I'm still trying.
    june

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