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  • Just Received Pathology

    Posted by FHet on January 21, 2017 at 9:20 pm

    Hello, I am a 45 year old male and things have been a blur since Cystoscopy revealed a tumor. I am 10 days from TURBT removal of a 1cm tumor. I received Mitomycin right after TURBT. Pathology revealed TaHG. Doctor plan of action: Monitor with Cystoscopy every 3 months for 2 years, then every 6 months for 2 years and then annually. Everything I’ve heard and read suggests further treatment with a 2nd TURBT and then BCG. I’ve already sent email to doctor with concerns and request to send for 2nd opinion (Johns Hopkins?)

    This is new and difficult to get a grasp of. I would appreciate any feedback. Thank You, Frank


    DX 1/10/17 Ta HG papillary tumor 1cm in size.
    Alan replied 8 years ago 4 Members · 10 Replies
  • 10 Replies
  • Alan's avatar

    Alan

    Member
    January 28, 2017 at 12:07 am

    Yes, a very non aggressive approach. As mentioned in a prior response and my profile, I was a single stalk/papillary tumor .5CM in size. My URO insisted on a second TURB to have MUSCLE (this is VERY important) in the pathology and also told me while I didn’t have to have BCG, he STRONGLY suggested it especially in high grade. The statistics are also with those that take it. Yes, there can be side effects but, it is nothing like chemo. I am sorry to read about the insurance problem also. With what I know and have read, I would be on to a second opinion, a new URO. Look for one that handles a lot of bladder cancer as so many see mostly prostate and other issues-maybe your insurance company’s web site lists such doctors. There are many posters that have passed through over my almost 9 years watching this forum and almost all have agreed to what we are discussing.


    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.
  • FHet's avatar

    FHet

    Member
    January 27, 2017 at 11:21 pm

    Final Pathological Diagnosis:
    A. Transurethral Resection, Bladder Tumor: Noninvasive Papillary Urothelial Carcinoma, High Grade
    B. Transurethral Resection, Base of Bladder Tumor: Benign, Partially Denuded Urothelial-Lined Tissue. (Health Care Provider- Kaiser Permanente – Riverside, CA)

    After multiple emails and voice mails doctor finally responded with a voicemail.

    Since my Ta HG tumor was a single papillary tumor on a stalk he is confident that no further treatment is needed other than 3 month cystoscopy’s. He said that there was no cancer found in the superficial lining and he is confident that it has not spread to the muscle since the lining didn’t have any cancer in it. There was NO muscle present in the pathology sample.

    He said that sometimes a second TURBT is done to recheck, but is confident this isn’t needed.
    He also said that since it was a single tumor on a stalk, he thought BCG wasn’t necessary because although it can help, it does come with possible side affects.

    From all that I have read regarding BC that comes back from pathology as High Grade, this is a very non aggressive approach. Everything I have read suggest a second TURBT followed by BCG.

    I have already pathology off to Johns Hopkins for a second opinion. They received it yesterday and I hope to hear back from them in a couple of days. Hoping to hear that they think is is Low Grade.

    Definitely looking at a second opinion on the treatment plan.

    I would love to hear feed back. My wife and I are very nervous and frustrated.

    Thanks,
    Frank


    DX 1/10/17 Ta HG papillary tumor 1cm in size.
  • Alan's avatar

    Alan

    Member
    January 27, 2017 at 1:20 pm

    Frank,

    Hang in there. Waiting was part of my torture also even though I was fast tracked. Two quick observations is that most tumors don’t change that fast and second you have taken the steps to beat this. With a doctor as unresponsive as yours, unless he has been ill I’d be on to another URO!


    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.
  • FHet's avatar

    FHet

    Member
    January 27, 2017 at 5:14 am

    Update:
    Sent pathology to Johns Hopkins for 2ND opinion and they received it today. Cost was $250. Website says I can expect emailed report in 3-5 days. Getting my gall bladder removed on Tuesday and hope to hear good news regarding 2nd opinion after. We emailed my doctor last Friday at 1:30 am (tough to sleep with all that’s on my mind) with questions regarding treatment, etc…still waiting on reply. I even emailed again yesterday, still waiting. I am looking for positive thoughts and hoping to hear back from Johns Hopkins that it is not High Grade as originally diagnosed.
    Thanks,
    Frank


    DX 1/10/17 Ta HG papillary tumor 1cm in size.
  • lilliang's avatar

    lilliang

    Member
    January 23, 2017 at 1:47 am

    I agree 100% with Alan and Sara Ann. I have the same diagnosis as you have, and you can see at the bottom of this post the path that my doctors have followed for my treatment. BCG treatments definitely improve our odd.

    Please seek a second opinion for your treatment path.

    Take care of you,
    Lilliang


    5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes – all NED. Now at scope 1x year.
  • FHet's avatar

    FHet

    Member
    January 22, 2017 at 8:25 pm

    Thank you to all who have taken the time to read and/or respond. I will update when I receive more information.


    DX 1/10/17 Ta HG papillary tumor 1cm in size.
  • Alan's avatar

    Alan

    Member
    January 21, 2017 at 10:41 pm

    Frank, Some others with more knowledge of your area of Southern California I am sure will chime in. As Sara Anne said Keck has a good reputation as well as UC Irvine. There are some other great centers but, I will let other expertise speak for you. John Hopkins is very often used on a second opinion on pathology reports.


    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
    January 21, 2017 at 10:41 pm

    I would strongly second Alan’s recommendation that you DEMAND a second opinion. .. “HIGH GRADE” by definition means that the cells are rapidly dividing and have the potential to spread FAST. The recommendation that you have been given is the standard for LOW GRADE.

    The good news is that there are several really good places to get a second opinion in Southern California. Keck School of Medicine, USC, is one of the world renown centers for treatment of bladder cancer. The bad news is that it is difficult, from what I have heard, to get Kaiser to allow you to talk to anyone outside their closed system.

    Best of luck..and do get a second opinion from a really good urologist who specializes in bladder cancer treatment.

    Sara Anne


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

    FHet

    Member
    January 21, 2017 at 10:30 pm

    I live in Southern California. My health care provider is Kaiser Permanente.
    No unmentioned health issue.


    DX 1/10/17 Ta HG papillary tumor 1cm in size.
  • Alan's avatar

    Alan

    Member
    January 21, 2017 at 9:51 pm

    Frank,

    Welcome but, as we all say we are sorry you have joined our exclusive club. First, this is a very treatable disease. Now that you have your diagnosis you’ll note that my notes/profile at the bottom are very similar to yours. I was TaG3 and tumor size was .5 CM. Your intuition is correct. The standard protocol is to do a second TURB when it is high grade to be sure margins taken are good. Also, the standard treatment of BCG is very important in high grade. It is proven in study after study of its usefulness. Unless there is an unmentioned health issue I disagree with his protocol realizing those of us posting are not doctors.

    So many practices treat mostly prostate issues in men that I am ready to suggest you get a second opinion. You really need the BCG and almost certainly a second TURB. John Hopkins is a great option as you have already opined. What area of the country do you live? Perhaps someone else reading will have a good teaching hospital or major bladder center to use.


    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.

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