• Posted by Hogans on June 18, 2016 at 10:40 pm

    About 10 days ago . I noticed blood in my urine. I saw a urologist who had me take a CT scan and a cystoscope and saw a mass that he thought was about 2 or 3 centimeters and a few microscoptic places. He discussed this with another urologist that does Robotic and laproscopic surgery and that the surgeon could burn off the microscopic places and then remove the mass with enough margins to be clear because of its location in the upper corner of my bladder. He called this segmental or partial cystectomy. I am very nervous and concerned.

    Hogans replied 8 years, 7 months ago 5 Members · 8 Replies
  • 8 Replies
  • Hogans's avatar

    Hogans

    Member
    June 19, 2016 at 8:05 pm

    Thankyou Catherine for your response, to my understanding the Doctor plans to burn off any microscopic areas he sees first and then remove the tumour segment. He is doing this as a bladder sparing procedure because the tumour is located in the upper corner of my bladder which he says leaves enough room for my bladder to still function properly. He said he could not do that if it was located any where else near the opening or a location that would effect the bladder’s fuction. That’s all I have to go on, I will call the office tomorrow to find out about biopsies. I know I will have to be followed closely for recurrences. Hopefully the BCG treatment afterwards will prevent recurrences. If anyone else has had this situation, I would like to hear from them.

  • catherineh's avatar

    catherineh

    Member
    June 19, 2016 at 6:59 pm

    Hello Hogans…. To reiterate what Cynthia said, welcome to the forum. I have read your post with interest because as others have thought, this doesn’t seem to follow what we are used to as being the more common treatment path. The type of bc will dictate the best way to proceed.

    I did have a partial cystectomy in 2010, but only after a 1.6 cm tumor was removed via a TURBT procedure and diagnosed/staged via a path report. There is a big difference in these two processes.

    – A TURBT is done, as you stated, via an instrument inserted into the bladder to remove the tumor, and take other areas of tissue if needed for biopsy. It is a short out-patient procedure and you go home in a few hours.

    – A partial cystectomy is major surgery where a complete section of the bladder is removed. The bladder is sutured and you will have to wear a catheter during the healing process, which for me was almost a month. Your uro has mentioned robotic surgery which may decrease the healing time for the abdominal incision, but the bladder still has to heal on its own. I opted for open surgery which involved an incision from just below the navel to just above the pubic bone.

    Partial cystectomy is most often recommended for a bladder adenocarcinoma, which is one of the rare types of bc. If your path report hasn’t come back, I’m not sure why they are making that recommendation so soon. The fact that they mentioned some other small areas needs to be investigated as well.

    When you talk to them again, ask for a copy of your pathology report so you can fully understand your diagnosis, and the options they are offering. Also, a second opinion is always a good idea.

    I had my initial TURBT locally but when the path report came back, my uro referred me to Vanderbilt because of the rarity of my diagnosis in his practice.

    I am glad you are here in the forum looking for information. The more you know, the more you can take charge of your treatment plan.


    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

  • Hogans's avatar

    Hogans

    Member
    June 19, 2016 at 3:13 pm

    I will call the Doctor’s office tomorrow and ask if a biopsy has been done and what does it say. I remember the Doctor saying that I was fortunate that the tumour was located where it could be removed segmentally and then closed without effecting the other part of the bladder. Apparently they feel it should be totally removed that way instead of through the scope. Would this help prevent recurrence?

  • cynthia's avatar

    cynthia

    Administrator
    June 19, 2016 at 1:37 pm

    Hogans sorry you have to be here but welcome to our community. The fact is that no one can tell you what you are dealing with by just looking at it. Stage and grade can only be determined by a pathologist looking at a cellular level. Many urologists have been doing this so long that they have a good idea of what they are looking at but the fact remains that unless they are superman and have microscopic vision they can’t be 100% sure until the pathology comes back.
    Getting a second opinion is always a good idea when you receive a cancer diognosis. I don’t know what part of Alabama you are in but what you need is a doctor that does bladder cancer as thier main practice you will usually find these at University Hopsitals if you are in Northern Alabama Vanderbilt is excellent.
    Good luck and we are here if you need us.


    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
  • Hogans's avatar

    Hogans

    Member
    June 19, 2016 at 12:50 pm

    I am located in Alabama. I heard the words Urothelia Papillary but I don’t know what the biopsy says. My understanding is that the grade and stage will not be known until during surgery.

  • Hogans's avatar

    Hogans

    Member
    June 19, 2016 at 12:29 pm

    Thankyou for your response, I don’t know what the biopsy is. It sounded like they would find out during surgery but they said the mass or tumour was located where it could be removed segmentally with clear margins also followed with a six week course of BCG.

  • nicke's avatar

    nicke

    Member
    June 19, 2016 at 9:53 am

    Hogans,
    I am confused about what the doctors have told you about treatment plan. It does not sounds like the normal way to go. First thing to do is always a TURB ( resection of the toumor) and sent samples for examination. Not until the path report is back you will know for sure IF it is cancer, and if it is cancer; type of cancer, stage and grade. It is not possible to make a treatment plan until you know this! Where are you located? I suggest that you go for a second opinion to a urologist spezilied in bladder cancer at a major hospital.


    Niklas

    12-12 Diagnosis
    13-1 Turb TAG1
    13-5 Turb Ta low grade, multiple
    13-10 Turb TaG2, multiple
    13-11 Mitomycin 8 weeks + 6 month
    15-01 Turb

  • jack-r's avatar

    jack-r

    Member
    June 19, 2016 at 6:28 am

    Hogans,
    All of us here with bladder cancer started out as concerned and confused, and found some answers and hope here. We all start off not understand all the terms and options that are considered. As a patient also, all I can offer is my thoughts – perhaps suggest some sources and some questions for your doctors.

    It sounds like you are suspected of having early stage, caught early, non-invasive BC (bladder cancer) , often called ‘superficial bladder cancer. Caught early and treated, the outlook is very good. The trouble with BC is that it tends to come back and need additional treatment, thus you may need follow ups for years. It sounds like you are in a good place to be, everything considered.

    A couple of terms you use seem to conflict. If, like me, after the word ‘cancer’ was spoken, the rest may have gotten kind of fuzzy.

    One of the next steps is to take bladder biopsies. Tissue will be sent to pathology to determine the stage and grade of the cancer, which will help determine future treatment options. Often done as an outpatient, under sedation, the visible cancer is removed in a surgical procedure called a TURBT – Transurethral resection of bladder tumor.

    Quoting from the source provided below:
    “Transurethral resection (TUR) with fulguration: Surgery in which a cystoscope (a thin lighted tube) is inserted into the bladder through the urethra. A tool with a small wire loop on the end is then used to remove the cancer or to burn the tumor away with high-energy electricity. This is known as fulguration.”

    A partial cystectomy is a different procedure from a TURBT. I’m not sure what is implied. You can read the difference in the document below.

    You will know much more once the TURBT is done and the pathologist has reported. You are at the beginning stage of being treated – the information gathering stage.

    You can read lots of ideas on the net. Stick to major reliable sources such as major cancer treatment hospital pages. The source below is from Cancer.Gov it has a lot of background info on many pages and describes a whole range of issues. Individual treatment will vary.

    This is a good site to come back to with specific questions and ask about what others have experienced. There are people here who have dealing with BC far longer than me who I have found very helpful. BUT always take your questions and concerns to your doctor, and make sure your questions are completely answered.

    One starting point for information:
    http://www.cancer.gov/types/bladder/patient/bladder-treatment-pdq
    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021

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