• Posted by raya on December 2, 2016 at 4:18 pm

    Hi,

    I am new to the site, 54, excellent health, physically fit, very active, never smoked, no chemical exposure and no family cancer history and was just diagnosed with Urothelial carcinoma. I had 3 tumors removed from my bladder on 11-18-16. I am told 2 were superficial and one invaded the lamina propria but the report also states that there was no muscle in the samples submitted to confirm muscle invasion. The process has been quite frustrating and slow moving. Blood and clots in the urine off and on for a year. Had a CT scan early on (March of 2016) and they said blood was from stones in the kidney and that was it. In the last 3 months it has gotten worse and at times is painful. I called a Urologist and he performed a cystoscopy and followed up with the resection on 11-18-16. I never received a call from the Urologists after leaving repeated messages for the pathology results and finally went to my family Dr who had the results for a week. I have reached out to Memorial Sloan Kettering in New York which is 2 hours from my house to take over. I am waiting for an appointment after they review the pathology report. In the meantime, I am worried sick and don’t know my next steps and still have not spoken to a Urologist 2 weeks after tumor removal. Bladder removal? Chemo? BCG? I realize there are no answers until I sit down with the Urologist. Thanks for letting me rant

    raya replied 8 years ago 3 Members · 13 Replies
  • 13 Replies
  • raya's avatar

    raya

    Member
    February 3, 2017 at 11:28 pm

    Thank you Sara Anne.

  • sara.anne's avatar

    sara.anne

    Member
    February 3, 2017 at 11:11 pm

    For those of us with CIS, bcg is often like a “miracle drug.” Here is a recent summary taken from the Johns-Hopkins website:

    A majority of UC are non-muscle invasive bladder cancer, however a high proportion of which will either recur (40-80%) or progress to muscle invasive disease (10-25%) despite complete resection.
    Bacillus Calmette-Guérin (BCG) intravesical immunotherapy is standard of care and now recommended for high- and intermediate-risk NMIBC with complete response rates of 55-65% for Ta/T1 tumors and 70-75% for CIS.
    Maintenance BCG therapy is recommended after induction therapy using the SWOG schedule of a 6 week induction course followed by 3 weekly instillations at 3, 6, 12, 18, 24, 30, and 36 months.

    I was diagnosed with CIS almost 9 years ago, went through BCG and the BCG maintenance protocols and have been cancer-free ever since.

    Sara Anne


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

    raya

    Member
    February 3, 2017 at 10:04 pm

    It’s been awhile since I last posted and things are moving slow. Had my 3rd TURBT at Sloan Kettering on 1-19-17. Returned this week for results and I am again shocked. They removed 4 tumors total (last Uro said 3) 2 were HG Papillary and 2 were HG Carcinoma in SITU.(last Uro/pathologist said all tumors were Papillary) The good news is none were muscle invasive and I am scheduled to start BCG on 2-17-17. As I read, Carcinoma in SITU is worse than Papillary? What are my chances for cure/remission with BCG?
    Thanks

  • Alan's avatar

    Alan

    Member
    December 21, 2016 at 11:11 pm

    Ray,

    I am sorry this happened to you and I too would be unhappy. When a 1st TURB doesn’t include muscle in the specimen OR is high grade a 2nd should always be done. When you have a 1st exam to work on you then know where to dig and while I am sure this requires skill and dexterity I would think you MUST get margins with muscle understanding doctors aren’t perfect. I have not seen this problem crop to my memory in 8 years watching this board. SK is where I believe you need to finish this up at and let’s hope that is the end of it!


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • raya's avatar

    raya

    Member
    December 21, 2016 at 9:13 pm

    Confused. Mad Scared.

    Had my second TURBT last Thursday 12-15-16.This was to determine if there was muscle invasion as the first test samples did not have muscle in them to evaluate. Still have not heard from Urologists on results so I again went to my family Dr this morning and he had received the results Monday 12-19-16. He shared the results and I am furious. The second biopsy states: 2 tumor samples received (the first test stated 3 tumors). Tumors are High Grade Papillary Carcinoma in each sample. Both samples have invaded the lamina propria.(the first test stated only one tumor invaded the lamina propria) No muscularis propria in sample to evaluate! This test was a waste of time, pain and $1000.00 deductible. I am totally stunned at the incompetence of a Dr in practice for 30 years. I contacted Memorial Sloan Kettering who was also waiting for me to forward the second pathology report and they set up an appointment anyway for Wednesday 12-28-16. They said they will determine if a third biopsy is required at our consult. Can’t see how we will determine a treatment plan without knowledge of muscle invasion. Has anyone experienced anything similar? Thanks, Ray

  • raya's avatar

    raya

    Member
    December 12, 2016 at 1:52 am

    Scheduled for my second TURBT this Thursday 12-15-16. Having it done locally as Sloan Kettering said it would take longer to schedule at their facility. I have requested the results of the second test be sent to Sloan and my family Dr. I have also requested all my records transferred to Sloan. The wait is killing me and I am concerned the second test will show muscle invasion and there goes the BCG option. Thanks for listening.
    Ray

  • Alan's avatar

    Alan

    Member
    December 6, 2016 at 7:17 pm

    Raya,

    Not to diminish your experience with your URO as I believe a second opinion is warranted, my URO told me my path report couldn’t tell if they had enough muscle the 1st time hence a second TURB. At the same time he said any high grade reading is cause for a second TURB. Sloan Kettering certainly has a great reputation. I did stay with my URO for a variety of reasons not the least that he personally read the CT scan with the radiologist saying “no tumors visible or apparent in the urinary tract” and my URO said, “no I see the shadow and that is a tumor”. Plus, when I had a question about antibiotics sometimes making low grade tumors read high (I was treated initially for a week to see if all I had was an infection-which is normal protocol), he replied he personally read it and it was high grade. To top that off he personally called my wife 1st (she worked at the hospital where he had privileges) to see if she or he should break the news about being high grade. She said no he is a big boy, tell him straight, which he did.

    My point is: I was simply lucky with a great URO that knew what he was doing. In hindsight a second pair of eyes would have been good if I hadn’t been so lucky. You will get through this and be better and stronger!


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • raya's avatar

    raya

    Member
    December 6, 2016 at 12:51 am

    I had a consult with my original Urologist today. He said I should not be too concerned. His plan is to do a second biopsy to confirm the 1 of 3 tumors did not invade the muscle. He said he did not think this was the case. The other 2 tumors were superficial in nature. He then wants to do BCG treatment and monitor closely and is confident I will be cured. I know he was giving me the best possible outcome. I did not inform him that I was going to Sloan Kettering yet for a second opinion. I did find out that after my first TURB I did not receive Mitomycin which from what I read I should have received. I will contact Sloan Kettering tomorrow to discuss if they want to perform the follow up biopsy or if they want me to do locally and provide the results. I have guarded optimism as the Dr said I was not yet a candidate for bladder removal due to age and progression. Still worried.
    Thanks, Ray

  • raya's avatar

    raya

    Member
    December 2, 2016 at 9:24 pm

    Thanks. Will post as things develop.

    Ray

  • Alan's avatar

    Alan

    Member
    December 2, 2016 at 8:45 pm

    Sloan Kettering is a good move! First rate bladder group and doctors. As Sara Anne indicated a second TURB will probably be done just to be sure of the first path report and is pretty normal protocol. The good news is your first TURB showed no muscle involvement even if the sample was flawed. Waiting is no fun but, you’re already way ahead of so many as you are taking charge of your situation! Keep posting as you have questions.


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • sara.anne's avatar

    sara.anne

    Member
    December 2, 2016 at 5:37 pm

    Just a quick thought for you….it does seem right now that things are moving much too slowly and you can just imagine that cancer growing like a weed. However, whatever is there was probably there for years before it even began to show symptoms. Yes, you DO need to have it taken care of. However, a few weeks at this point will not make a bit of difference. What WILL make a difference is the quality of the medical care you receive to treat it.

    You are on the right track!

    Sara Anne


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

    raya

    Member
    December 2, 2016 at 5:32 pm

    Hi Sara Anne.

    Thank you for the positive words and thanks for the quick response.

    I do expect a second TURB for a clearer picture of the situation. It all seems to be moving so slow and I am told the cancer is fast growing.

    Thanks again!

    Ray

  • sara.anne's avatar

    sara.anne

    Member
    December 2, 2016 at 4:52 pm

    Hello, Raya, and welcome to our very exclusive club…wonder why no one ever joins willingly!

    Most of us will never know exactly what caused our bladder cancer. Yes, statistics tell us that there are things that seem to be related…smoking is the obvious one, but many many people do not seem to have any particular risk factor.
    This is true of most cancer.

    You are doing absolutely the right thing in moving your care to a place like
    MSK. First of all, with the questions that the path report left hanging, and second with your dissatisfaction with the communication from your current urologist, now is definitely the time to switch. You and your urological team will become best friends and the relationship will continue for a long time, so you want to be comfortable with it. I wish more patients would follow your example.

    Yes, you are sort of up in the air about what comes next, and MSK should provide some answers. Unfortunately, your imagination is all you have until then and it is a troublesome friend. It is even possible that MSK may do a second TURB to clarify the situation.

    Try not to obsess about this (easy for me to say) and know that you are much closer to some answers.

    Please know that we are here for everything from trying to answer questions, to listening to you rant, to commiseration.

    Please let us know what happens…and the best of luck to you

    Sara Anne


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

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