• Posted by Akhnaten on July 18, 2010 at 10:10 pm

    I had an unpleasant surprise recently. I recently had a kidney stone which passed, and I went for a follow-up urological procedure (IVP and cystoscopy). So, I didn’t have any more stones. But the doctor said he found a small polyp near my ureter which he biopsied and sent for pathology, and I have a meeting next week to find out whether, apparently, I am a cancer patient or not.

    I’m in my 30s, don’t smoke or work in an industrial occupation, and am in general good health except for some weight issues. I should not be in a risk category for bladder cancer. This was asymptomatic and a purely incidental diagnosis.

    But I am kind of anxious and have been obsessively googling what this could mean for me. I am hoping that it is just some kind of fibroepithelial false tumour or cystitis due to the irritation of the stone, which sat far down my ureter. I doubt I have anything more than a “benign” polyp, if you can call them that. But am I staring down the barrel of, at minimum, a decades-long life of annual cystoscopies?

    mmc replied 14 years, 6 months ago 5 Members · 32 Replies
  • 32 Replies
  • mmc's avatar

    mmc

    Member
    August 16, 2010 at 2:27 pm

    Good news again!

    By the way, since you did NOT have bladder cancer, you should have no problem at all getting life insurance. A benign polyp doesn’t even have to be listed on your medical conditions stuff as far as I know.

    If it had been malignant…whole different story.

    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.
  • Akhnaten's avatar

    Akhnaten

    Member
    August 16, 2010 at 2:22 pm

    So just for completeness’ sake, the remainder of the story is that I went in two weeks ago for the second cystoscopy, and the doctor very quickly spotted the polyp. He gave me the choice of doing a complete TUR right there or coming back for an anaesthetic procedure—it was very small, he said. Considering that this started with a stone and that I was already trussed up and be-endoscoped, I suspected I did not really need the anaesthetic and told him to do it.

    It was the right choice. A few minutes of cutting and fulguration—felt like butterflies or something—and he had what really was a tiny speck out of me. Sent for pathology.

    Anyway, the second pathology also agrees that it’s a benign papilloma, but of course, it is not over—I must go for regular cystoscopies I guess indefinitely now. The chance in a patient of my age for it to turn to something malignant is thank God kind of low, but I am a Known Risk now, I guess. This is probably all not good for my prospects of getting life insurance, but whatever :)

  • mmc's avatar

    mmc

    Member
    July 26, 2010 at 2:01 am

    That’s Great news!!!


    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.
  • Akhnaten's avatar

    Akhnaten

    Member
    July 25, 2010 at 8:32 pm

    I guess I owe y’all an update. First, good news: I picked up my records and my final path report on the original TURB came in. Once again, benign papilloma with no detectible cytological atypia. Which is a relief, of course.

    Of course if Hopkins does another TURB (which I’m guessing they will), I’ll have to go through another round of anxiety. Oh, well, but the prior probability of it being worse than that is now somewhat lower.

    I *am* grateful to the original doctor for noticing it. He has many years of experience, as I understand it, including a stint in academic medicine. But I was planning to leave his practice anyway because I got him on the luck of the draw on an ER referral when I came in with the stone, and for various reasons I realized he would not have been my first choice. Not least because he is far away…but now I’m going to an even farther doc, heh.

    I got lucky, aside from the first ER episode I had an easy time of stone-passing…but even if this Great Odyssey For A Little Polyp (“polyp” make it sound so cute) hadn’t happened, I would likely have had to find a urologist of my own choosing because, as non-life-threatening as they are…stones are highly likely to recur.

    Anyway, thanks folks for pointing out how to go about dealing with this.

  • gkline's avatar

    gkline

    Member
    July 23, 2010 at 7:01 pm

    You do indeed owe a sincere “Thank You” to your General urologist. He was on the ball with his diagnosis. But I can spot a fault in an auto paint job….. but I am sure I would not be able to fix it. You need a surgeon that has fixed it before and will fix you. Your uro did a great job finding it. Now you need the right person to get it done.

    I had a very similar experience with my Lifelong family doctor. He was laser quick scheduling tests. He was also very quick to get me to a bladder cancer specialist within 3 days. I still see him twice a year AND I thank him for saving my life! But we both know he was really looking out for me when he sent me to the guy who specialized in my type of cancer.

    We hear so many stories about doctors who have failed to turn over the patient to a specailist and the patient suffers. I am so glad you found this site. Even though they pushed you to get to the cancer center very sternly…. They were just looking out for your welfare…. Well, actually, your life!

    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]

  • Akhnaten's avatar

    Akhnaten

    Member
    July 22, 2010 at 4:27 am

    Yes, I am trying REALLY HARD to think of this kind of knowledge as a good thing. There’s another half of me that wishes it were over with the kidney stone. Even though I’m leaving his practice I should be grateful to the general uro for finding it.

    At the same time excessive anxiety is not good for health either…

  • 's avatar

    Guest
    July 22, 2010 at 4:21 am

    That is soooo great…i told you he was a great man and a great urologist/surgeon. He is so caring. Look at it this way you’re at the #1 Urology hospital with #1 pathologists and a #1 uro…what more could you ask for. At least you’ll know without a doubt what you have.
    Dr.Schoenberg is so very generous with his time and advise. He helped me greatly when i was first diagnosed. I simply was following my local internists instructions and went to the uro he recommended and had never even heard of bladder cancer. I picked up Dr. Schoenbergs book and found him on his web site and he wrote me back the next day and set up a phone appt. with me. He actually gave me the names of the top uros all over the country…he didn’t need to do that. I just think the world of him as a person and a surgeon.
    pat

  • Akhnaten's avatar

    Akhnaten

    Member
    July 22, 2010 at 3:47 am

    Now I have to back out of the general urologist’s practice and extricate my records…

  • Akhnaten's avatar

    Akhnaten

    Member
    July 22, 2010 at 3:46 am

    Well, you were right about Schoenberg (do they read here?). He answered my email very promptly, and he appears to agree with you that I’ve got time to think. So I’m in with a cystoscopy and I’m guessing probably re-TURB next week. Of course, the re-TURB is kind of the worrying part in case it gets upgraded or something. Or, benign papillomas look, as I understand it, mostly like normal urothelium, so maybe I’ve been over-graded and it’s just a weird outcropping of tissue—if wishes were horses and all that.

  • Akhnaten's avatar

    Akhnaten

    Member
    July 21, 2010 at 4:59 am

    That’s good advice.

    I had no idea that Castle Connolly existed. I may not even (thank God/God willing) have Real True Cancer, but this has opened up worlds of things I didn’t know even existed before. Well, I did, but not so immediately.

    A sample of the nearer urologists all find that they mostly don’t actually do this kind of surgery on a regular basis. Let’s just say that my urologist is not on the list. The only one CC has rated near me is Schoenberg. Well, I’ve emailed him, and I guess I should call Hopkins tomorrow or something. My insurer seems to list Hopkins as a participating hospital and all.

  • 's avatar

    Guest
    July 21, 2010 at 4:47 am

    I know but don’t compromise on your care. I took a plane to NYC for my second opinion and re-turb and drove 4 l/2 hrs when i had my cystectomy and diversion done. I’m 8 l/2 yrs out and its the best drive and plane trip i’ve ever made.
    pat

  • Akhnaten's avatar

    Akhnaten

    Member
    July 21, 2010 at 4:43 am

    Hunh. Well, if he has space than Schoenberg it is, long drive notwithstanding. It’s always a pain to get a co-driver to drive me back. GWU had the good sense to be on the DC Metro so I could have taken transit.

  • 's avatar

    Guest
    July 21, 2010 at 4:39 am

    i wouldn’t go by one testimony..GWU is ranked very low on the list of hospitals that are ranked
    http://tinyurl.com/2ay9c2e
    Dr. Jarrett has some fine credentials but also is not ranked by Castle Connelly as one of the best uro’s in the area.
    Personally i would not want to go to a hospital with a less than desired mortality rate as this one seems to have.
    pat

  • Akhnaten's avatar

    Akhnaten

    Member
    July 21, 2010 at 4:09 am

    Does anyone have any opinions on Jarrett at GWU? PubMed tells me that he has a fairly good publication record on urinoscopic surgery and nephrectomies and ureteral cancers. He is also quite a bit more convenient to get to then either Schoenberg or hospital-outpatient urologist. Also the only doctor I’ve seen so far where someone actually bothered to positively review him on vitals.com.

  • mmc's avatar

    mmc

    Member
    July 21, 2010 at 4:02 am

    If you can get in to see Schoenberg and the current status is that it is a benign papilloma, then waiting a couple/few weeks seems like no problem at all.

    You’d be surprised how many local urologists run into complications. You want good margins around the tumor and you don’t want to have a puncture.

    When in doubt, go with the best you can get as fast as you can. In your case though, it doesn’t seem like there is any significant risk to letting time slip a bit in order to get to the best doc.

    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.
Page 1 of 3

Sign In to reply.