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  • Diagnosis elusive

    Hello everyone,
    I would like to ask a few questions if I may.

    April 20, 2007 Ultrasound - 3 tumors in left testicle
    May 01, 2007 Urologist visit
    May 04, 2007 Bloodtests back - No markers
    May 31, 2007 L/IO Scheduled

    Does this timeline seem a bit slow?
    After the urologist saw the bloodtest results, he said "I would still recomend that the testicle be removed" like it was no longer serious, so I requested the IO anyway and he scheduled it for June 07. I am also concerned with the timeline as the testicle is painful.
    Now after exploring this site, It appears possible to have no markers but still have cancer (is this common?).
    At one point the IO was sheduled for May 24 but it was moved back because the prosthesis wasn't available.
    Has anyone had any experience/problems with a prosthesis? This one is saline filled silicone.
    Also should I be scheduling further tests like CT etc. now to speed things up or wait until the pathology is back from the removed testicle?

    Thanks in advance,
    Gary
    Apr 20/07: Ultrasound to investigate lump: Tumor confirmed
    May04/07: Markers normal
    May29/07: Left I/O
    Jun 06/07: Diagnosis: Pure seminoma stage 1A (some rete testis invasion) 0.8cm
    Jun 21/07: CT: All clear: Starting surveilance
    Jan 15/09: Started TRT (AndroGel 1% 2.5g packets)

  • #2
    There are basicly tweo types of testicular cancer a fast growing version that the younger guys tend to get (non-seminoma) which almost always raises tumor markers, the other type is slower growing (seminoma) and often does not have elevated markers, the older group gets that one more often. So to answer you question not showing markers really tells you nothing but the ultrasound showing three tumors is a fairly good indicator that you have testicular cancer. In my opinion the doctor is making the wrong assumption in thinking this isn't serious, that testicle should be removed now and at the latest early next week. You should also consider finding another urologist.
    Last edited by dadmo; 05-23-07, 08:38 AM.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

    Comment


    • #3
      You know, I had a similar experience, the doctors staff, at first had my surgery a couple of weeks after the doc. decided an I/O should be done, my wife called the office, said it was too long to wait,given what we may be dealing with, and they bumped it a week and a half closer. You may just want to give a call and voice your concerns. If they don't help you out, maybe you DO want to find a new doctor.

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      • #4
        I concur with dadmo. I've been noticing that urologists with patients presenting with testicular masses but without markers have no sense of urgency. Although your lack of markers suggests the presence of seminoma, the assessment is hardly conclusive. You should do the following:

        1. Move up your I/O, and insist on it. They won't do it unless you light a fire under their ass. An I/O is considered elective surgery, so surgeons sometimes feel that they have the liberty of being leisurely about it.
        2. Get your radiology in order. You'll need that to assess for spread.
        3. The prosthesis should be the least of your worries. The priority is to get the testis out.

        On the side, with 3 masses and no markers, it sounds like you have multifocal seminoma (pending the pathology from the I/O, of course). I was diagnosed with exactly that. Feel free to keep firing away questions.
        "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
        11.22.06 -Dx the day before Thanksgiving
        12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

        Comment


        • #5
          I agree with the others.

          When my mass was confirmed by ultrasound, my urologist immediately was on the phone scheduling surgery, telling me: "We never like to let the sun go down on a mass in a testicle". Of course, in my case it was Friday of a holiday weekend, so the best we could do was Monday - but at least we got the blood work and CT done that day. So, as they prepped me for surgery, I got the news of my clear CT and no markers - but my urologist cautioned me that eventhough it was great news, he would not know for sure it was seminoma (slow growing and slow spreading), until he saw the pathology report.

          So, it seems to me that your urologist is making a lot of assumptions. Perhaps they're OK rules of thumb - but yes some that show no markers have some mix that still amounted to non-seminoma. You are right to question. You have to be your own advocate. I don't know how important a prosthesis is to you, but I would recommend that you should push to get the surgery moved up and definitely get going on the CT scan. And, maybe look for a new urologist.
          Right I/O 4/17/06, Seminoma Stage Ib
          RT (15 days) completed 6/1/06
          All clear as of 5/8/09

          Comment


          • #6
            I showed no markers and I had poritions of non-seminoma. If you cant get your surgery moved to yesterday I would find a new doctor that can.

            Comment


            • #7
              Wow thanks to everyone for the responses, they are much appreciated!
              Yea, I have been down this road with the urologist's office and they wouldn't budge. They also didn't seem to get that the prothesis was not as important to me as getting the surgery in a timely fashion! Maybe the vintage brown shag carpet in his waiting room should have tipped me off...
              Anyway I took your advise and called my GP this morning and he got me an appointment with another urologist tomorrow, so it will be interesting to see what he thinks. Waiting does seem to be the biggest complaint with our Canadian health care system.

              Thanks again,
              Gary
              Apr 20/07: Ultrasound to investigate lump: Tumor confirmed
              May04/07: Markers normal
              May29/07: Left I/O
              Jun 06/07: Diagnosis: Pure seminoma stage 1A (some rete testis invasion) 0.8cm
              Jun 21/07: CT: All clear: Starting surveilance
              Jan 15/09: Started TRT (AndroGel 1% 2.5g packets)

              Comment


              • #8
                I can understand being pushed around for the first appointment but once there is even a possibility of cancer you would think the system would move faster. Our private system can be great but we still get lots of people who have an unacceptably long wait between diagnosis and action.
                Last edited by dadmo; 05-25-07, 07:42 AM.
                Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                Comment


                • #9
                  Well I saw the new urologist today and he is taking things more seriously than the first one which I am glad to see. He has me scheduled for surgery next Tuesday May 29, and is more communicative and willing to take the time to answer questions etc.

                  Thanks all for the very good advice!
                  Gary
                  Apr 20/07: Ultrasound to investigate lump: Tumor confirmed
                  May04/07: Markers normal
                  May29/07: Left I/O
                  Jun 06/07: Diagnosis: Pure seminoma stage 1A (some rete testis invasion) 0.8cm
                  Jun 21/07: CT: All clear: Starting surveilance
                  Jan 15/09: Started TRT (AndroGel 1% 2.5g packets)

                  Comment


                  • #10
                    Yes that is indeed good news. As soon as you have any results please post them.
                    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                    Comment


                    • #11
                      Good job! You are your own best advocate. It's great that you are getting this taken care of sooner. Best of luck with the surgery,
                      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                      11.22.06 -Dx the day before Thanksgiving
                      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                      Comment


                      • #12
                        Good luck with the surgery and pathology!
                        4/26/07 - mass confirmed w/ no elevated markers
                        4/27/07 - left I/O
                        5/2/07 - Dx: 100% seminoma stage 1A
                        Surveillance: CT/blood (6 month cycle)
                        4/27/13 - 6 years cancer free!

                        Comment


                        • #13
                          Hey man. I was 100% non-sem. and I never had elevated markers. Your doing a great job.

                          staying on top of it!
                          May 2000 I/O 100% Emb. Carc./June 2000 RPLND, 1 Node with Micro Involvement/ July 2000 1xBEP, 1xEP

                          Comment


                          • #14
                            Originally posted by The Prospector
                            Well I saw the new urologist today and he is taking things more seriously than the first one which I am glad to see. He has me scheduled for surgery next Tuesday May 29, and is more communicative and willing to take the time to answer questions etc.

                            Thanks all for the very good advice!
                            Gary
                            so, you must have had surgery today. keep us posted how you're doing!

                            Comment


                            • #15
                              Just got home from the hospital today, everything went well (was in overnight). Surgery was 30 minutes with 60 minutes recovery (general + local anesthetic). Got about a 5" incision with about 15 staples that get taken out in 10 days or so. Once on the pain killers (Toradol 10mg and Tylenol 650mg) there is little discomfort. Getting in and out of vehicles and coughing seem to be the tricky bits.
                              Not much to do now I guess except wait for the pathology results which are expected to take about 10 days.

                              Thanks for all the encouragement!
                              Gary
                              Apr 20/07: Ultrasound to investigate lump: Tumor confirmed
                              May04/07: Markers normal
                              May29/07: Left I/O
                              Jun 06/07: Diagnosis: Pure seminoma stage 1A (some rete testis invasion) 0.8cm
                              Jun 21/07: CT: All clear: Starting surveilance
                              Jan 15/09: Started TRT (AndroGel 1% 2.5g packets)

                              Comment

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