• Posted by Margellen on January 7, 2011 at 3:26 pm

    I was just diagnosed with BC late Tuesday afternoon and am glad I found this forum. My husband and I are in total shock and very scared. I can’t stop shaking. Like some of you, I had misdiagonosed UTIs for a few months, and finally went to a urologist for a variety of tests for kidney stones, overactive bladder, etc. A cystoscope (my last of 4 tests over 6 weeks) revealed a “polyp.” I had no blood in my urine. The growth was superficially removed 2 weeks go.

    I don’t have a lot of information yet except it was an agressive type of tumor. Next week I have all the scans scheduled. It takes 5 days for insurance approval, so the delay. Then I meet with the urologist a few days later for results. We have no intention of continuing with him.

    The closest medical center is Penn. Does anyone know Dr. Malkowicz? Other options are Sloan or John Hopkins. Does anyone have suggestions?

    How can I stop the shakes?

    GKLINE replied 14 years ago 13 Members · 18 Replies
  • 18 Replies
  • gkline's avatar

    gkline

    Member
    January 24, 2011 at 3:30 pm

    Marge

    I’m with Mike. We are here for you. Hoping that you have clear margins and won’t need us anymore. Nothing will make us happier that not needing us.

    sincerely

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • mmc's avatar

    mmc

    Member
    January 21, 2011 at 7:02 pm

    Margellen,

    Any news on the pathology reports? You mentioned that you would be getting them back this week.

    Hope all is well!

    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.
  • motomike's avatar

    motomike

    Member
    January 21, 2011 at 6:54 pm

    Margellen
    It is a stressful time so we are here to help in a variety of ways. It might be a question for you to ask your doc, it might be a web site referral for background, or just a bit of advice on something that worked for us. We will be watching for your pathology reports as well as other info from you and will be here for support for you both.


    I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
  • dukel's avatar

    dukel

    Member
    January 18, 2011 at 8:50 pm

    Margellen, Sorry to hear about your cancer. You have came to the right place for the advice and support you need. I hope you will be comforted by what you read on this forum. Most all of us here have been on the journey you are beginning. The more you can learn from this site the better off you will be. Most all of us have felt as you did on initially hearing of our cancer, it will pass. Try to take it one day at a time. As George said, believe it
    or not, there will also be some good come from all of this.
    Duke

  • gkline's avatar

    gkline

    Member
    January 10, 2011 at 2:54 pm

    Margellen

    Sorry to welcome you to this site. We are here for you. Just a few things to help stop the shakes….. You are NOT going to die anytime soon. Probably NOT from bladder cancer. You ARE going to get through this. Your life WILL change. Sometimes even for the better.

    As ALL of the great people here have already said; This is a journery and you have already started to look out for yourself. You have found the BEST Dr. and hospital for b.c. You have taken charge of your own life and THAT is a HUGE step. You have to be an advocate for yourself.

    We are here for you and we are a great group to bounce ideas off of. Please feel free to ask questions, rant, cry, and look for a shoulder to lean on. If you have a caregiver that has questions, they can come here too. Basically, we are your one stop bc center. :laugh: :laugh:

    We also have a Very Weird sense of humor about this. NOTHING is sacred and NO question is out of bounds.

    Sincerely and with care

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • dieseldoc's avatar

    dieseldoc

    Member
    January 9, 2011 at 7:00 pm

    Join use sundays in the chat room 8:oo eastern,we will happy to hear from you!!!


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

    Margellen

    Member
    January 9, 2011 at 6:37 pm

    It has been great to hear from all of you, and I really appreciate the support. I’m hoping to get the pathology report some time this week.

  • Margellen's avatar

    Margellen

    Member
    January 9, 2011 at 6:36 pm

    It has been great to hear from all of you, and I really appreciate the support. I’m hoping to get the pathology report some time this week.

  • moonerj's avatar

    moonerj

    Member
    January 9, 2011 at 4:03 pm

    I do not have much to add to what other members have already stated. You now have a very knowledgeable group to assist you with questions you might have. Getting the 2nd opinion by a bladder cancer specialist at Penn is a very important step.
    Staying proactive and positive is extremely important at this point. Just follow the advice you have been given.
    I wish you all the best,
    Jack


    TA Grade 1
    3 Turbts
    30 BCG Treatments
    Cancer Free since Nov 2007
  • nix's avatar

    nix

    Member
    January 9, 2011 at 11:42 am

    Hello Margellen, We are happy you found us, and as said earlier, Pat, Mike and Cynthia are a wealth of information.
    We have all been where you are right now, and know exactly how you feel! You are certainly on the right path – just take a deep breath, gather all the information and move forward.
    You have a lot of people in your corner to help you through this diagnosis.
    Finding the right/best doctor is the most important issue, and you have already achieved that!
    Keeping you in my thoughts,

    Nancy


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • michstate89's avatar

    michstate89

    Member
    January 9, 2011 at 5:21 am

    Welcome to this forum. Patricia, Cynthia and Mike are very knowledgeable – they have had wonderful advice for many here on this forum. Bladder cancer affects us all in different ways and everyone has their own story. I have been cancer free now for 4 years and get on this site sporadically, but i do go through maintenance treatments. The cancer diagnosis has affected me less and less over the years and I hope this continues. Best wishes for you on your journey and hopefully you’ll experience the same after a short time.

    Ross


    Ross M
    TaG1 March 06
    Recurrence Jan 07
    BCG Maintenance after 6 week treatment
  • mmc's avatar

    mmc

    Member
    January 8, 2011 at 2:42 pm

    Margellen,

    Sorry to hear about the diagnosis but glad you found us! It is scary time but the good news is that bladder cancer is VERY treatable.

    You are already taking the most important first step after being diagnosed, and that is getting to a top bladder cancer specialist! GOOD JOB!

    Pat already explained what you need to do to prepare for that. Once you get your pathology report, let us know what it says and we can help you understand the implications.

    Some of us were mistakenly thought to have intermittent UTIs for YEARS so if was a few months for you, you may be ahead of the game.

    Knowledge is power. You want to be an advocate for yourself during this process. One thing that may help is to keep a log book of your tests, your doctor visits, the questions you want to ask the doctor (and the answers he gives). I used to take notes in the doctor’s office so I wouldn’t forget things. Once you first hear the “cancer” word, you only hear about everything 5th word and none of it makes sense because the cancer word just keeps bouncing around your head, blocking out everything else.

    There are many of us here who have been through various types of treatments (depending on what stage/grade we were diagnosed with).
    We’ve been there and done that and are happy to help you in any way we can.

    Your husband is also welcome to join and post questions or the two of you can team up with your posts and questions. While it may be you with the diagnosis, he is certainly part of it.

    You two are not alone! We are here to help.

    All the best to both of you!
    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.
  • catherineh's avatar

    catherineh

    Member
    January 8, 2011 at 2:17 pm

    Hello Margellen… You are exactly where I was last year when a small mass was found in my bladder by my gynecologist on Jan 4th. Total and complete shock and disbelief. I had never ever even had a UTI. It’s like they are talking about someone else and you can’t bear to even think the word “cancer”. It is devastating news to hear.

    I finally calmed myself down by thinking that it did no good to panic or stress out until I knew what I was dealing with, and had a plan and a good medical team. My local uro had little experience with my type of tumor, so I had to wait two weeks for my “expert” consult with my surgeon he referred me to at Vanderbilt. The waiting is hard not knowing what you may be facing. Much easier said than done, I know.

    It is wonderful that you found this site at this point. I would have been a lot less scared if I had had these guys for support in the beginning. As Jim pointed out, BC isn’t the end of the world and is very treatable with many options to tailor to your particular situation.

    I will keep you in my thoughts as you work through these very scary first few weeks.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • sara.anne's avatar

    sara.anne

    Member
    January 8, 2011 at 1:23 am

    Hi Mar!! You have a lot of friends right here to hold your hand. You are very fortunate to be able to go right away to one of the best in the country…This is SO important.

    Right now…with the “shakes”….just try to roll with the punches. I remember coming home from my diagnosis and very coldy and calmy (ha ha) thinking “Now I know what I will die from.”
    Well, that wasn’t quite the case, and with the help of this group I have had lots of BCG treatments and am doing great. After a few weeks pass, you will be better able to think about this without the shakes!!

    Good luck to you and you are started on the right path.

    Sara Anne


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

    Guest
    January 7, 2011 at 10:43 pm

    mar..you will need that path report and the slides from you TURB..which is what you had..a trans urethral resection of the bladder..all you need do is first call the hospital where you had it done and ask for the pathology report and go sign for it…Pathology can also pack up your slides and send to Penn or you can hand carry them…kind of depends on how fast they are??
    If you’re doing a CT scan that would be put on disc immediately and just ask for a copy so you can take it with you.
    Are you still breathing? Please do!! We’ll help you through.
    pat

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