• Posted by dani on September 11, 2016 at 7:45 pm

    Hello everyone! So thankful to have found this forum. I have not been definitively diagnosed as yet. I went to ER about 2 weeks ago because of first time right lower quadrant pain that did not go away. ER doctor suspected appendicitis or stone and ordered CT without contrast which showed a 4.4 x 3.8 cm mass arising from and protruding into the lumen of the bladder. It also showed multiple vague, low-attenuation lesions scattered within the liver which could not be accurately characterized due to noncontrast exam. I was referred to a urologist who did a cystoscopy in her office and I was able to see the mass myself on the screen. I am very concerned because of the size of the mass and, of course, the liver lesions. The doctor started talking so fast after the procedure in her office and frankly, I had to pee so badly I did not really hear much of what she had to say. She did say she was fairly certain it was a TCC and would have to come out. She said she may instill a chemo drug at the time of surgery. I am scheduled for a CT urogram tomorrow. The surgery itself is scheduled for 9/20/16. I am told it is an outpatient procedure and I should be home in about 4 hours. I have called the doctor’s office and asked many questions of the doctor’s assistant and was told either she (the assistant) or the doctor would call me back or the doctor may want me to come in for an office visit which I am more than willing to do. It has been 5 days in all (3 work days) since I called and still have heard nothing from either of them. Needless to say, I am not impressed. I would be interested to know of side effects from both the urogram and the surgery itself. The doctor and her assistant both seem as though this is no big deal, but given the tentative diagnosis, it is a very big deal to me. Thank you for taking the time to read this. Any comments would be very much appreciated.

    Dani replied 7 years, 8 months ago 4 Members · 13 Replies
  • 13 Replies
  • Dani

    Member
    October 23, 2016 at 5:32 pm

    Thank you so much Jake for replying and for relaying your experience. It is very helpful. My doctor is performing an ileal conduit with an external bag so it seems I should not experience the incontinence and/or the need for catheterization. Although the thought of carrying around an external bag for the rest of my life is not very appealing, it seems a small price to pay to be around a while longer. At any rate, I really value your comments. Thank you again for sharing.

  • Jake2013

    Member
    October 23, 2016 at 2:07 pm

    Hi Dani,
    I just joined this site because I was curious about what people had to share years after going through RC, and I saw your post. I know everybody’s sutuation is different and experiences will vary depending on age, sex, health, etc. I was initially skeptical of my doctor’s motivations when he diagnosed me with cancer, sensing they suggest surgery based on the prestige and revenue it produces for them. But I can tell you are a definitely more pragmatic than I was, and after having gone through my surgery almost four years ago I feel confident saying it was the best solution based on my situation.
    I was presented with the option of radiation or surgery. After I decided surgery was the most comprehensive action it was suggested I do nine weeks of chemothearpy before having the surgery because the TURBT is not guaranteed to remove every cancer cell, and chemo would presumably knock-off any cells that may have escaped. I don’t remember what letters or numbers my cancer cells were, so this may be why they didn’t suggest chemo for you.
    I had my surgery on a Firday and they would have sent me home Monday except there was a blizzard and I didn’t have anybody to pick me up. I was able to walk from the gurney to the bed post surgery. Overall pain was not a very big issue. The worst pain I experienced immediately after surgery was gas bloating and if it werent’ for an observant nurse that suggested gasx I would have been begging for narcotics. The most effective pain med however was some potent IV NSAID (don’t remember the name)
    The first couple months are more inconvenient than debiliating. After all the healing is completed, incontinence is the most frustrating thing. I needed to use a catheter for over a year because the ureter kept trying to heal shut. I highly recommend getting sent home with hard plastic catheters, all I had was a soft rubber reusable one and had to make an emergency appointment after trying, unsuccessfully, to urinate for a couple days.
    Today I don’t need to cath myself anymore, voiding is much easier and more natural, after learning to relax instead of force, and leaking is practically non-existent, day or night. I still have to get up in the middle of the night however. No more solid seven hours of sleeping. Sexually everything is good, I’d say 80% of pre-surgery.
    I hope you make the most well-informed decision for your situation and thank you for sharing.

  • Dani

    Member
    October 23, 2016 at 12:03 am

    I had the TURBT on 10/10/16. Came home with a catheter and the placement of a stent in my left ureter as the tumor was causing my left kidney to drain poorly. Dr. said he got all of the tumor out which was good news. I hated having the catheter and removed it myself at 1 week post TURBT. I felt pretty good after removing the catheter. Then I went in for the postop visit on the 19th. The pathologist measured the left bladder wall tumor at 5.0 x 5.0 x 1.5 cm and the base of bladder tumor at 6.0 x 5.5 x 1.5 cm. The doctor says he feels the best treatment for me is to remove my bladder. He said with removal of the bladder, there is an 85% CURE rate, which sounds pretty good to me. He will do an ileal conduit with bilateral pelvic lymph node dissection. I am scheduled for surgery on 11/7/16. While this is not the outcome I was hoping for, if this can be cured, I can deal with it. I am concerned about the recovery period and what that will entail. It sounds like a huge operation and I have no idea what to expect. The only time I have ever had general anesthesia was for the TURBT. He said he thought there would be a 5 – 7 day stay in the hospital. And to think all this was going on in my bladder and I had absolutely NO SYMPTOMS. CRAZY!

  • Dani

    Member
    October 6, 2016 at 6:16 pm

    Thank you for your response and offer to help. I am really anxious to get this thing going and take care of it whatever it may be. I am so happy to have found a doctor I feel comfortable with and certainly may seek another opinion when the results are returned. So sorry you are going through this, but glad to hear I have the support from a fellow Washingtonian. I will look forward to following your progress. Thanks again.

    Dani

  • Optimistic2

    Member
    October 6, 2016 at 5:49 pm

    Dani,
    Sorry to hear what you are going through. I thought I should communicate with you since I live in Manson Washington. Actually central Washington. I was diagnosed in May of this year with T1 HG bladder cancer. Single tumor of a little more than 2cm. I have been seeing a urologist in Bellevue, WA since then at Overlake Hospital whom I like well, but still after my initial TURB and path report came back I made an appointment at the UW urology dept. for a second opinion. I saw DR Daniel Lin who is the Vice Chairman of research and a urologist and oncologist there. He had my path slides reevaluated at Fred Hutchison and reported back reconfirming my first results. He gave me advice on how to move forward and confirmed my path forward. It was very reassuring and he seemed like a good and thorough doctor. Just in case I asked him how many RC’s he personally had performed and he said hundreds. He said if I need major surgery down the road come to the UW. Since then I have had my 6 BCG treatments and will have a cystoscopy in November to see if I am all clear. All procedures so far have been at the Overlake Hospital clinic. Best of luck going forward and if you have any questions please ask.

  • Dani

    Member
    October 6, 2016 at 5:07 pm

    So I ended up cancelling the TURBT on 9/20 because I just did not feel comfortable with the care and answers I was getting from the urologist my primary care physician referred me to. The fact that she did not even inquire if I needed to use the restroom immediately following the cystoscopy during which she instilled liquid into the bladder was a huge red flag to me when it happened, but I brushed it off thinking maybe she was super busy. This may not seem like a big deal to some, but I could not listen to a thing she said as I was concentrating so hard on holding my urine. I finally had to say, “I am sorry, but I really have to use the restroom” to which she seemed surprised and said, “Oh, get dressed, it is across the hall”. Then because I did not hear any of her explanation about future treatment plans, etc., I called her office a few days later with numerous questions. The call was returned the same day by the doctor’s assistant who asked what my questions were and seemed to be writing them down saying she would relay them to the doctor. The doctor did not call me back for 8 days when she called with the results of the CT urogram and mentioined she understood I had some questions. This was on Thursday and my TURBT was scheduled for the following Tuesday. After much thought and discussion with my children and friends, I just had that gut feeling that I would not be comfortable with this urologist for the long haul and I cancelled the appointment for the TURBT the following day. My friend, the radiologist, recommended another urologist here in Spokane with excellent credentials and my new friend Sara Anne from this forum took a look at his credentials as well and felt he would be a good one to see. I was scheduled for a consult on 9/30 and on my way to the office that day received a call saying the doctor had called in sick. You can just imagine my disappointment. It was almost overwhelming. They rescheduled me for the following Monday, 10/3. When I got to his office I was informed he was still in surgery and would be an hour or so late. Again, very disappointed. Well, I finally got in to see him that afternoon and it was so worth it. He apologized profusely both for being sick on Friday and for being late for my appointment that day. He took a great deal of time explaining things to me and wanted to do a cystoscopy to see for himself what we were dealing with. He took a great deal of time with me even though he had a waiting room full of patients waiting to see him. I loved him. I am scheduled for TURBT on Monday at 8:30. My point in relaying all this is to say that if you have doubts about the care you will receive from any doctor, look for another. I am 100% confident in this doctor’s qualifications and the care I will receive from him as I make my way through this awful thing that has happened to me.

  • Dani

    Member
    September 17, 2016 at 5:52 pm

    Thank you Sara Anne. Nice to hear we are neighbors. I am in Spokane. I have checked out the doctors here in Spokane, but have not found those with a particular interest in BC. Can you share the names you found here in Spokane meeting that criteria. Also, is it possible to have a urologist look at the scan to determine what their diagnosis and treatment might be? I am feeling somewhat hesitant to cancel the appointment at this late date for the TURBT on Tuesday, but I am also skeptical about this being the best approach for my BC.

  • sara.anne

    Member
    September 17, 2016 at 5:40 pm

    Well Dani! We are almost neighbors since I am in Portland, OR. I am a bit familiar with Eastern Washington, having driven through there many times…..wheat fields and ?

    Of course the very best closest place to you is the University of Washington in Seattle, but I understand that this is a long drive. You might want to consider getting a second opinion there and their advice as to whom you might go nearer to you. There also appears to be a number of well-qualified (on paper, anyway) urologists in Spokane (I sort of did a quick Google search and looked for those in Spokane who had trained in well-known academic sites and who indicated an interest in bladder cancer.) Didn’t find anyone who would meet MY criteria in Walla Walla. Tri-Cities seems very thin.

    Hope this helps a little.

    Sara Anne


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

    Member
    September 17, 2016 at 4:54 pm

    I am in eastern Washington state.

  • sara.anne

    Member
    September 17, 2016 at 4:46 pm

    If you do not feel comfortable with the doctor, for any reason, you do need to find another, especially since your situation seems complicated. You will want to go to a urologist at an institution that sees a LOT of bladder cancer cases and would have the expertise to know what to do in a complicated case.

    This is your decision, and it is a tough one. You want to get this settled as soon as possible, and yet you really want to get the best treatment option available.

    If you let us know where you are located, geographically, someone will have a suggestion as to a place you might go.

    Sara Anne


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

    Member
    September 17, 2016 at 4:20 pm

    Good morning! I had the CT urogram and the TURBT is scheduled for Tues…4 days away. When the doctor called me about the results of the CT, she mentioned that my left kidney was not draining perfectly and there was a potential that the tumor had gone into the muscle thus the potential of a stent or even removing the bladder (I assume she meant worst case scenario on down the road). I requested that a friend who is a radiologist look at the scan online and he expressed some surprise that the doctor is removing the tumor transurethrally as the tumor appears to be wrapped around the ureter as well as protruding into the lumen of the bladder. In my mind, that seems like a legitimate concern. I guess my question is, should I cancel the surgery on 9/20/16 and get a second opinion? Thanks, in advance, for any suggestions.

  • Dani

    Member
    September 11, 2016 at 8:21 pm

    Thank you sara.anne. Your reply was very informative. This has been so shocking as I have had absolutely no symptoms. The pain I went to the ER for was in my lower right side and subsided while I was awaiting the CT scan. the mass seen on the CT was on the left lateral bladder. I am told I had microscopic hematuria from the urinalysis taken in the ER, but other than that, no symptoms whatsoever. BTW, I am a 71 year old female who had a melanoma several years ago and several basal and squamous cell skin cancers through the years. Thank you again for your very quick response. It is very much appreciated and does ease my anxiety somewhat.

  • sara.anne

    Member
    September 11, 2016 at 8:07 pm

    So sorry to hear your news. I can understand that you have a LOT of questions. Just a hint….if you don’t get an answer from the doc’s office (any doc) in about 24 hours, call back!!

    First, to try to answer some of your questions. A CT-urogram is simply
    a CT scan of the urinary tract done twice….once without contrast medium and once with it. There should be no side effects whatsoever!

    The “surgery” is called a TURB. This means “transurethral resection of the bladder.” Basically, it is exactly like the cystoscopy that you have already had, except that it is done under general anesthesia because she will be taking out as much of the tumor tissue as she can and also taking samples of the tumor and other places in the bladder lining to send to the pathologist for analysis. After the TURB, the urologist may have a pretty good idea of what the diagnosis is, but it won’t be for sure until the report comes back from the pathologist and this can take up to a week. The urologist may do a wash of the bladder after the TURB with mitomycin, a chemtherapeutic agent, but it is NOT chemotherapy and you should have no side effects from this at all.

    As for side effects from the TURB, many of us have none. Sometimes, there may be bleeding afterward from the tumor or other biopsy sites as well as s some discomfort. Also, particularly in males, a catheter is sometimes necessary for about 24 hours. As I said, most of us do not have any side effects.

    You will be seeing the urologist a LOT in the future, so if you do not feel comfortable with her, the time to make a change would probably be as soon as you have the results of the TURB. You might want to sit down with her and discuss your thoughts and feelings….she sees so many cases that she may forget that for most of us CANCER is a scary word.

    What happens after the TURB results are in will, of course, depend on the diagnosis. IF it is a low grade tumor with no signs of extension beyond the bladder lining, the recommendation would most like be just cystoscopy exams every three months. IF it is high grade, the recommendation would probably be BCG therapy. IF the diagnosis is something other than these, the treatment will vary.

    Please remember that, when caught early, bladder cancer is VERY treatable. It is scary, I know, but the more you know that less scary it becomes.

    We will all be keeping our fingers crossed for 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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