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  • Bladder Cancer History

    Posted by vgau on December 4, 2009 at 1:00 am

    I was thinking about the members of this group the other day and wondered about their history with bladder cancer. As a newly diagnosed patient, my first concern was how long do I have? After researching I was somewhat calmed knowing that there are so many options for treatment.

    Just wondering how long some of you have been dealing with this since not everyone shows that in their posting (not even sure how to put that on mine).

    Don’t know if this is too personal of a question. If it is…just ignore this posting.


    Dx 10/5 Non Invasive Papillary
    michstate89 replied 15 years, 2 months ago 13 Members · 16 Replies
  • 16 Replies
  • michstate89's avatar

    michstate89

    Member
    December 9, 2009 at 4:10 am

    vgau,

    I think that many people live pretty normal lives (minus the cystos and other treatments). And superficial is certainly different than invasive.

    I was first dx in March 2006 – 1 papillary tumor, non-invasive. Then had 4 tumors in Sept 2006 and 11 tumors in January 2007 – all probably the result of seeding from the first. The uro in 2007 did 30 min of mitomycin post TURB and then did a saline flush for 24 hours. I have had the regular 6 weeks and then quarterly BCGs since, and have been cancer free since.

    I exercise regularly, drink moderately (mostly watching sports at a local bar), try to watch what I eat, and do not smoke. I do take cholesterol medicine and fully expect that something else other than bladder cancer will take me (hopefully many years from now). The regular check ups actually give me a little piece of mind that if I do have a recurrence, at least I will have caught it as early as possible.

    Ross


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

    joey

    Member
    December 8, 2009 at 11:44 pm

    12/07 non invasive pap TCC.

    May have come back 04/08 with focal CIS. cysto and fish were negative, 5 pathologist, 2 from the hospital and 3 from a lab saw nothing, one saw cis. Had 15th BCG treatment today.

    Joey

  • cheryl522's avatar

    cheryl522

    Member
    December 5, 2009 at 1:21 am

    Steve has been cancer free since July, 2005 with no recurrence.

    He had his 1st TURB with hs urologist in July, 2005 where he removed the tumor and the CIS. He was then referred to his urologic oncologist who performed a 2nd TURB in August, 2005 and found residual CIS, but it was not a recurrence.

    He has since completed 27 full strength BCG treatments. After his initial 6 BCG treatments he’s had maintenance treatments every six months and finished them in April, 2009.

    …Cheryl

  • vgau's avatar

    vgau

    Member
    December 4, 2009 at 9:19 pm

    Did he complete his treatment in 2005 and been cancer free since then?


    Dx 10/5 Non Invasive Papillary
  • gkline's avatar

    gkline

    Member
    December 4, 2009 at 8:59 pm

    My cancer story is very condensed indeed
    * 06/10/08 Needed a full physical to renew my racing licence with Skip Barber. Dr. found blood in my urine and ordered a blood and urine workup and an ultrasound.
    * As soon as the ultrasound results were shown my Dr. made an appointment with Albany Med urology dept. for following day.
    * By 9:30 next day, I was informed by the Oncologist Urologist that I had bladder cancer (we both watched it in living color on TV)
    * My first TURB was 10 days later
    * My second TURB was 2 weeks after that
    * My RC was 5 days after that! My Dr was NOT going to wait around and watch this thing (5 tumors) take over.

    Unfortunatly, I did not know a thing about this site then and was flying by the seat of my pants! I did know enough to ask for a second opinion and my surgeon showed me where he had sent my info to 3 other Bladder Specialists and they all concurred with his diagnosis.
    I also had a friend who called me and offered to take me to MD Anderson, as he “knew a few people” My surgeon was gracious and said it was THE place to go…… He should know, he worked there!
    I know that Albany Medical Center does not figure to be high on the Bladder Cancer places to go, But I feel as though they took great care of me.

    I also must compliment my primary physician for the diagnosis! I have seen some on this site who have had months of tests and misdiagnosis before they said, bladder cancer.

    That’s my story and I’m sticking to it.

    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]

  • moonerj's avatar

    moonerj

    Member
    December 4, 2009 at 8:23 pm

    Originally dx Jan 2006, 3 tumors, one being large,
    Path report TA low grade
    Started BCG due to the size of the 1 tumor
    Had 2 recurrences during first 18 months year, single tumors still TA low grade
    Had problems with UTI’s during BCG treatments (5)
    Completed 30 BCG treatments Feb. 2009.
    Last Turbt Nov. 10/2007
    Cancer free now over 2 years
    Will have 3 month Cystos until 3 years clear
    Jack


    TA Grade 1
    3 Turbts
    30 BCG Treatments
    Cancer Free since Nov 2007
  • cheryl522's avatar

    cheryl522

    Member
    December 4, 2009 at 8:10 pm

    Hi Vgua,

    I posted my husband’s story in the Non-Invasive Superfical Section in the beginning of October, 2009 entitled “FINALLY!!!”. I did it to give people hope and I do hope that it may help someone.

    Steve was diagnosed in July of 2005 and has completed 27 full strength BCG treatments and has been clear ever since. He graduated to yearly visits and his next cystoscope will be in October, 2010.

    His diagnosis was a Ta, Grade 3 with CIS.

    …Cheryl

  • egtmcsq's avatar

    egtmcsq

    Member
    December 4, 2009 at 7:56 pm

    vgau wrote:

    I was thinking about the members of this group the other day and wondered about their history with bladder cancer. As a newly diagnosed patient, my first concern was how long do I have? After researching I was somewhat calmed knowing that there are so many options for treatment.

    Just wondering how long some of you have been dealing with this since not everyone shows that in their posting (not even sure how to put that on mine).

    Don’t know if this is too personal of a question. If it is…just ignore this posting.

    hello vgau.its a good question,not sure there would be the room to show on my postings,

    4/4/06 dx@44 2.5cm tumour/turbt/chemo(mitomycine)G1pta,in hospital for a week due to a perforated bladder,
    19/7/06 4 tumours/turbt/chemo/
    22/11/06 turbt/clear
    22/3/07 turbt/clear,constantly ill through out this period due to many UTI,s
    17/8/07 flex/cysto recure,s
    24/10/07 6 tumours/turbt/chemo/mostly all over 1cm
    22/1/08 chemo (mitomycine)x6 weeks
    18/3/08 4 tumours plus 2 flat areas sus CIS turbt/chemo,also a major complication due to the clumsey rigid cysto,the details of which i shall omit
    26/3/08 pathology shows sus CIS to be calcified calcium
    deposits lodged in previous tumour wounds,but also shows an upgrade to G2,
    asked to be put on the hexvix treatment trial …denied
    17/7/08 2 tumours turbt/chemo
    asked again to be put on hexvix treatment trial…denied
    28/9/08 after advice i contacted the consultant in charge of this new hexvix treatment and decided to go for what is sometimes known as an adverse referal(uk)and was accepted
    22/1/09 7 tumours some over 1 cm turbt/chemo
    4/4/09 2 tumours turbt/chemo both very small papillary type
    12/8/09 turb…….clear,observations were the bladder has the look of a normal healthy one,halabloodyhula
    at last i can dream again
    i realize this is a long post,but that has been my journey so far,it may not be yours,i have read many posts on here from warriors who are dx and have treatment,and then go into recovery,and a happy life,and i would wish the same for you also,

    ian

  • mmc's avatar

    mmc

    Member
    December 4, 2009 at 5:38 pm

    Karen,

    Sorry about your recent diagnosis but glad you found us.

    Sounds like you definately need a reTURBT. You need to be sure there are good clear margins around the cancer removed.

    3 spots of high grade without sufficient tissue to fully stage is clearly something to follow up quickly.
    Please get to a bladder cancer center for the follow up work.

    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.
  • Karenb's avatar

    Karenb

    Member
    December 4, 2009 at 5:29 pm

    Just had cystoscope and biopsy done on Oct. 30, 2009.
    Report shows #1 right posterior wall grade 3 papillary transitional cell carcinoma no evidence of invasion seen focal squamous metaplasia of adjacent urothelium.#2 right posterior dome grade 3 papillary tcc. with focal adjacent cis. no evidence of invasion see.
    #3 right dome grade 3 tcc, with focal urothelial cis no evidence of invasion seen

    all 3 state no muscularis propria is present for evaluation.

    Waiting for my insure. pre-cert to go for bone scan. Then appt on Jan 8 with urologist.

    Been trying to do all the research I can so I have a clue before the Jan 8 appt. Sometimes, all the info seems a little overwhelming. Just glad I found this site. Been reading all the past posts. A lot of useful info from others who have been through this.
    Prayers are with all of you.

  • sara.anne's avatar

    sara.anne

    Member
    December 4, 2009 at 4:57 pm

    Yes, my papillary tumor was non-invasive, thank goodness. And, to add to Pemquid’s history, I suspect that mine was caused by second hand smoke. Will never prove it, but…..

    Sara Amme


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

    pemquid

    Member
    December 4, 2009 at 2:20 pm

    May 2006 was the start for me – one small low grade, non-invasive papillary tumor; recurrence two years later (same type, but 2 this time, and even tinier). Have been on BCG since the recurrence, and still all clear; cystoscopies still every 3 months, next scheduled for January. My dad had bladder cancer back in the mid-1970s, and lived until 1989 with only one minor recurrence a few years after the first tumor. (He died at age 84 of lung cancer, unrelated to the bladder cancer, though both cancers were no doubt related to the fact that he had been a smoker.) I never smoked, but was exposed to second-hand smoke growing up (both parents) and in my younger adult years (college, etc.). Evidence is still inconclusive on second-hand smoke and bladder cancer risk, however.

    Ann


    Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
  • leeh's avatar

    leeh

    Member
    December 4, 2009 at 3:33 am

    I’ve got my neo 20 months ago. Tumor was large and aggressive and had to do a neo but when they got in they also found it was non invasive and every thing else such as lymph nodes and ct scan and bone scan were clear.

    My prognosis is about 95%. I get scans every 6 months now.

    I’don’t think there is anything too personal on this site

    Lee

  • vgau's avatar

    vgau

    Member
    December 4, 2009 at 2:10 am

    Sara.anne,
    Was your papillary non invasive?


    Dx 10/5 Non Invasive Papillary
  • DougG's avatar

    DougG

    Member
    December 4, 2009 at 1:34 am

    April 2001….noninvasive


    Anita
    Forum Moderator
    Caregiver
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