Home Forums All Categories Non Invasive Bladder Cancer Deja Vu All Over Again

  • Deja Vu All Over Again

    Posted by globalguy on January 29, 2013 at 4:24 pm

    Well,,,, here I am, sweating it out. My doctor has notifed me that my latest cytology resutls are positive for high grade TCC once again. Almost a year to the date of my first diagnosis.

    Last week my doctor had me in for my regular “poke and peak” and saw nothing unusual. His concern now is that it may be somewhere else in my renal system.

    Surgery is scheduled for next Monday and multiple biopsies will be taken. Have to say, this is hitting me worse than my initial diagnosis.

    Prayers and positive vibes would be gretly appreciated.

    Thanks much –

    Joe


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

    globalguy replied 11 years, 3 months ago 11 Members · 48 Replies
  • 48 Replies
  • globalguy

    Member
    August 12, 2013 at 7:46 pm

    Thanks much, Catherine,

    Will do. Cystoscopy isn’t a concern but more results of cytology. Just a bit shell shocked as a result of earlier this year. But your positive vibes really help, as always. Will be sure to send results as soon as they’re received.

    Joe


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

  • catherineh

    Member
    August 12, 2013 at 6:55 pm

    Hey Joe… Wishing positive vibes for Wednesday. Look forward to hearing from you afterward. Sorry to hear about your former job and hope that new offer comes through very soon! Glad you’re having a great summer… it ain’t over yet!

    Sending you extra sunshine!


    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

  • globalguy

    Member
    August 12, 2013 at 6:44 pm

    Hi All,

    First screening after my last all clear in May, coming up this Wednesday. Feeling really good and feeling positive as well.

    Right after my all clear, my company let me go. What a coincidence. But,, having a great summer and looks like an offer is forthcoming.

    Mike, any words of wisdom. Haven’t heard from you. Let me know you’re doing okay.

    JoeP


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

  • catherineh

    Member
    July 13, 2013 at 5:09 pm

    Hello Aye… welcome to the forum. I am so happy you are here. Please post any questions you might have for us, but it looks like you have been dealing with this for a while now. Also, I invite you to start a new thread to tell us a bit about your history when you feel ready. Everyone’s story has much in common but each of our cases and journeys are uniquely different. What we learn from each other is an invaluable resource.

    Again… welcome!


    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

  • Aye

    Member
    July 13, 2013 at 1:47 pm

    Walking the same road as you …. am on my second year of cysto and bcg every 3 months …. a war of attrition .

  • globalguy

    Member
    July 12, 2013 at 4:41 pm

    How are you Mike? Haven’t touched base in a while and wanted to check in. Praying for you every day bud.

    Best,

    Joe


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

  • globalguy

    Member
    June 1, 2013 at 4:01 pm

    Really wish there were a way to reach out on a more personal level, though.

    I’m really doing well and would like to provide whatever support/encouragement I can.


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

  • mspeevish

    Member
    June 1, 2013 at 3:21 am

    Many thanks again. I’m not sure if you are the person I should ask regarding forum questions or not. If I have goofed again, please let me know to whom I should ask, and I will forward these questions to your recommended person. Questions:

    I had my first surgery 4 mos ago (TURB) and the pathology came back as transitional, non-invasive. Just had my 1st check-up and found several more tumors. I am scheduling a 2nd option and tentative surgery with chemo wash this month. Should I move myself over to another thread (depending on results) and start with a new topic?

    Do the posts run from newest to oldest? Stupid question, but it seems that some topics have postings in both directions. If so, I will just follow the leaders.

    My oldest daughter is the Lt. Gov. of the Key Club in The eastern Redlands (CA) Unified School District. Key Club is the high school branch of the Kiwanis. Society. She is always open to community support opportunities, and would like to look specifically into the ABCS as a potential project. This has becomehn a focus since not only do I have bladder cancer, her dad had kidney cancer 3 years ago, one uncle had melanoma (OK now) and the other is battling bladder cancer that has spread to his lungs, bones, and lymph system. Do you have recommendations for organizing an awareness event and/or fundraiser?

    Maybe it could include environmental exposures (smoking, 2nd-hand smoke, diet, etc). I am a geologist and used to sample ground and surface water; you would be horrified to know what we saw.

    I do go on. If you could post a reply to me under then”Newly Diagnosed” thread (funny bone), I will thank you again. Does one do anything more.specific to officially thank someone? I hope it is not a Facebook thing. I am an antifacebookaterian.

    Schmoochies. – Mercedes

  • mspeevish

    Member
    May 30, 2013 at 3:04 am

    Oops.

  • cynthia

    Administrator
    May 30, 2013 at 2:10 am

    Just a reminder of why the moderators remove emails, phone numbers and personal contact information. It is for your protection this forum is open for all to read. Just because this is a survivor site does not make us immune to con men and identity thief’s. We do not do this to upset anyone but we feel so strongly about guarding everyone’s privacy that it is part of our terms and conditions.


    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
  • mspeevish

    Member
    May 29, 2013 at 8:43 pm

    I am totally a probie here; just signed up minutes ago. DV, Your journey is inspirational. You have multitudes of friends who have become your extended family through the years, not the least of which is mm (magic mike? – couldn’t resist, sorry, Mrs. Mike).

    I was first diagnosed in Dec 2012; and had a transitional resection Jan 21. Aside: would it kill them to just call it tumor removal? Really? This is worse than ordering a small coffee at Starbucks.

    Dr. Ko performed a cyscoptosy, and let me see the tumor. it was dthe sea fan kind (kind of mesmerizing, really), and I asked him where Nemo was. No smile, nothing. Nothing at all, though the nurse snorted a bit.

    So, I am once again scheduled for a small Starbucks coffee, in and out, just a few hours. I kind of knew the cancer had returned, as I had been having the backache and lower pelvic pain just weeks after Jan. The tumors must have started up right after the first surgery. Bastids.

    I have only three complaints. One, my urologist, Dr. Ko at Loma Linda University, doesn’t seem interested in altnatives that might compromise his (!) results. He is a clip board type of guy, and does not appear to have a sense of humor. I realize this may be an unrealistic expectation in a cancer situation, but at least a human doc could fake a little for my kids’ sake. I thought my Nemo joke was quite hilarious.

    Finally, would it really kill the insurance companies to let us stay overnight after cancer surgery? They have so much of our money, and it IS cancer, which should count for something, if only a night with cath assistance and a couple of ,, to order. The most I should ask hubs to do at home is to leave me in bed with some saltines, water, drugs, Jello, and a walker. The girls should not have to deal with cancer mom except to kiss to sleep. Actually, my husband might redeem himself by building me a motorized rope tow to the toilet. He CAN cook, but only grilled creatures and corn on the cob. I have no words.

    See? See? I can be funny. I plan to visit USC Norris center in LA for a 2nd opinion after we get the biopsies from this round. My neurologist and neuropsychologist are there, and they could cross-access all of my info. No telling what good may come of that.

    Anyway, my email is <>. Feel absolutely free to contact me. I will try to find some bcancer jokes in the meantime, and may any of the gods you relate to help you and yours through this.

  • gkline

    Member
    May 29, 2013 at 4:25 pm

    Joe

    Be very careful when you talk to Mike on the Phone. As you try to cheer him up, He has a very sneaky way of turning the conversation around so that you are the one getting cheered up.
    Here is a guy in a major fight, and all he wants to do is make you feel like a million bucks!

    Amazing!

    We should all have such a good support system.

    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]

  • globalguy

    Member
    May 29, 2013 at 4:05 pm

    Your words of encouragement helped me so much. I wish I can do more than send you my thoughts and prayers.

    Best –

    Joe


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

  • mmc

    Member
    May 29, 2013 at 3:46 pm

    Doing ok Joe. Hanging in there.


    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.
  • globalguy

    Member
    May 29, 2013 at 2:07 pm

    Mike,

    I’ve been thinking about you and praying for you. How are you doing?

    Best,
    Joe


    Joe P

    Diagnosed: 01/2012 – TCC CIS
    All Clear: 06/2012
    Diagnosed (Again): 02/04/2013 – TCC CIS
    All Clear (Again): 05/03/2013
    Diagnosed Yet Again 10/15/2014 – RCC
    Working It
    Mass General Hospital, Boston, MA.

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