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  • Not diagnosed but will be soon, very worried

    Hello everyone, this is my first time posting. Ive been reading the forums for this past week, some of them over and over again.

    I had stabbing pain in my lower left abdomen in March but postponed seeing the doc. I finally saw my GP in mid April and he treated me for infection.

    In mid May he ordered ultra sound which found heterogeneous mass and hypervascularity and he referred me to urologist.
    The earliest appointment i could find was in Aug 19!
    Nobody really explained to me what i had, but i called around per my insurance to try and find something sooner but no luck.
    Also my GP never send the ultra sound with the referral notice. My urologist said they wouldve taken me in sooner if they had the ultrasound. So i waited for 3 months like this not really knowing what was really going on. I was feeling better and when i checked my testicle i didnt feel anything suspicious. I think i checked it right.
    My original u/s said that my right testicle was slightly bigger than my left

    Findings: right testicle 4.3 x 2.1 x 2.8 and left 4.1 x 2.5x 3.0
    Right testicle has "extensive heterogeneity within a majority of the right testicle which is poorly defined and appears to measure 3.1 x 1.9.
    My GP diagnosed me with epydhermitis.

    Fast forward 3 months later and i finally see the urologist. My serum markers are ok except hgc which is at 3 out of <2 and is flagged as elevated. My second ultrasound after three months of stupidly waiting around and not knowing how serious this was:

    The right testis measures 3.7 x 2.3 x 3.6 centimeters.
    Right testicular mass containing calcifications measuring 3.2 x 2.2 x 2.5 cm in size with considerable hypervascularity.

    So in three months it went from heterogeneity to calcifications. Also I started experiencing back pain, first in my ,back, then one day sharp stabbing pain under my right rib which kinda went away but it still lingers for over three weeks, and low back pain and discomfort, and testicular pain. Some of it comes and goes.
    Today im waiting for the urologist to talk about my results and plan the next stage.

    Can anyone help me understand just how much three months of waiting with a 3cm tumor means?
    Do seminomas/nsgct cause calcifications or heterogeneity? Can someone who had similar results share their diagnosis or if they know anyone else who had anything similar.

    edit: I forgot to add that i checked my testicle in Aug 25 and felt 2 hard lumps, one felt like half of a small grape and the other just a small but wider bump, which probably doesnt matter with the ultrasound results in hand.
    Last edited by db79; 09-03-19, 08:41 PM.

  • #2
    One more thing i wanted to add is that i had my second ultrasound and blood tests done on friday but my urologist cant see until next friday to go over the results, and plan the next move. So its going to take another week at least to have it removed. I called his office everyday to see if he could see me earlier but no luck. Is it ok for them to be so passive about this?

    Comment


    • #3
      Hello there, sorry to welcome you.
      I'm no expert, can give you just my humble opinion. Some US results indicate TC, some don't.
      Heterogenity means that there is a part of testicle that looks (very) different than other testicle tissue. Indicate changes, can be cancerous, can be something else.
      Poorly defined means that it probably has no sharp boundaries, or it doesn't look like something familiar, like normal tissue, may be euphemism for TC.
      Hypervasularity means that there is a blood flow through mass, also usually indicate fresh growing TC.
      Calcifications somehow don't fit in TC diagnosis, they can indicate tissue (normal or TC) degradation, which is probably more common in fast growing TC tissues that don't get enough blood. Fact that mass didn't grow much in three months, or even didnn't grow at all also may indicate the same, but can also indicate that is just inflamation process that is now over. Seminomas/NSGCT are histologicaly very similar, calcifications or heterogenity don't indicate type of TC.
      What I think, there is a chance that it is TC, but there is also chance that it is not, and I believe that ultrasound guy want to point both options.
      3 months waiting, uhm, waiting surely increase risk of spreading if it is TC, it is hard to say how much. One week more or less is not a big deal, but yes, you do right thing to call them everyday.
      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
      Waiting...

      Comment


      • #4
        Thank you for the answer. The first ulrasound also found hypervasularity if that makes any diference. What about the tumor markers? LDH 186 HCG 3, AFP 3. Is that indicative of anything like spreading or type? Im 40yo.
        Last edited by db79; 09-04-19, 05:38 PM.

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        • #5
          Markers are ok, so if it is TC, it's probably seminoma, but pathology report will give us exact answer. Not indicative for spreading.
          45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
          Waiting...

          Comment


          • #6
            I have my o/I surgery on Sept 9. Almost 4 months after my first u/s. Is there any chance I wont be needing chemo? I feel pressure left flank and some low back pain.

            Comment


            • #7
              You don't even know fr sure you have TC at this point so yes, you are pretty likely getting the horse behind the cart worrying about chemo. It's best to take it one step at time, get the i/O & path report, if it is C, than you'll need a CT scan to see if it spread. Only if it has spread should chemo possibly come into play. TC is normally painless, so odds are whatever pain you're having is due to something else.

              Dave
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Thanks for your replies. I had my I/O on Monday and results tomorrow. No CT scans scheduled yet. I dont know why but theres not a sense of urgency. My first urologist wanted to schedule my I/O two weeks after diagnosis!
                This brings me to my first question. I live in Albuquerque, New Mexico. Its a pretty small town, but the biggest in the state. How can I find proper tratment, and a oncologist that knows what to do whatever my situation might be? Does anybody have any suggestions for how to find out information on TC cancer treatment in/ near Albuquerque?
                Another question is about night sweats. I dont recall having them before I/O but since I feel my pillow damp and my shirt collar too every night. Its not dreanched in sweat but it feels damp and cold. What can be causing it? low T?
                Last edited by db79; 09-15-19, 11:55 AM.

                Comment


                • #9
                  Treatment for TC is well established, unless you find yourself with an unusual case most oncologists should be able to handle any further treatment if needed. The folks on this forum will be able to offer information as you learn more from the testing you will receive shortly. You should be getting blood work for tumor markers( AFP, hcg & LDH, normally) & a CT scan soon. Those results will determine what, if any, further treatment you may need.

                  Night sweats could possibly be from low testosterone, but that is not all that common, one testicle is normally sufficient, but some guys do have that problem. At one week post I/O I wouldn't be too concerned, you are still recovering from surgery. That said, it won't hurt to mention it to your doc.

                  Dave
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

                  Comment


                  • #10
                    I got my pathology report.
                    -PURE SEMINOMA
                    -TUMOR FOCALITY: UNIFOCAL
                    -SIZE: 3.0x2.6
                    -HILAR SOFT TISSUE: EARLY INVASION WITH EXTENSIVE RETE INVOLVMENT
                    -EPYDSYMIS: NO
                    -TUNICA VAGINALIS: NO
                    -SPERMATIC CORD: NO
                    -LYPHOVASCULAR INVASION: FOCALLY POSITIVE
                    -MARGINS: NEGATIVE FOR TUMOR
                    OTHER: INTRATUBULAR GERM CELL NEOPLASIA
                    PATHOLOGIC STAGE T2 NX
                    Urologist said I will probably need radiation but I havent done CT scans yet.

                    Comment


                    • #11
                      You want the CT results before talking about further treatment. While the LVI increases the chance of finding nodes on the CT, it does not automatically indicate that the tuor has spread.
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #12
                        Originally posted by db79 View Post
                        I got my pathology report.
                        -PURE SEMINOMA
                        -TUMOR FOCALITY: UNIFOCAL
                        -SIZE: 3.0x2.6
                        -HILAR SOFT TISSUE: EARLY INVASION WITH EXTENSIVE RETE INVOLVMENT
                        -EPYDSYMIS: NO
                        -TUNICA VAGINALIS: NO
                        -SPERMATIC CORD: NO
                        -LYPHOVASCULAR INVASION: FOCALLY POSITIVE
                        -MARGINS: NEGATIVE FOR TUMOR
                        OTHER: INTRATUBULAR GERM CELL NEOPLASIA
                        PATHOLOGIC STAGE T2 NX
                        Urologist said I will probably need radiation but I havent done CT scans yet.

                        Unifocal means that there is just one tumor, size is still below treshold of 4 cm so tumor can be clasified as small, invasion with rete involvement means that tumor spreaded in rete part of testis that may increase chance for distant spreading, lymphovascular invasion is positive and that's no good of course, intratubular neoplasia means that there were tumor precursors in testis that slightly increase risk of tumor occurence on other testicle, other stuff is ok. Stage T2 on scale from T1 to T4 where T1 is the best is not so bad. Path report is very well written, must say.
                        My guess is that you have about 15-20% chance that TC has spreaded, and 80-85% chance that you are over with treatment and cured just with I/O.
                        Don't think that is urologist's job to talk about radiation (where did he pull this out, doesn't make much sense?), he should order CT and then transfer you to oncologist with results of blood tests, CT and pathology.
                        45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                        Waiting...

                        Comment


                        • #13
                          My urologist said she was also my oncologist. She said that even if my CT scans come back good she will still suggest I have radiation because of T2 diagnosis, and that surveillance should not be considered. She would collaborate with the radiation oncologist and get me treatment but I have to wait for 1 month after surgery to heal.
                          I am really worried about lymphvasular invasion and rete testis invasion. I'm also worried about the treatment. When is radiation considered and when is chemo?

                          Comment


                          • #14
                            Radiation of what? Uhm, I wouldn't like to act as internet doctor or expert of any kind but I'd get second opinion. This sounds obsolete, also it is rushed, you haven't even been on CT scan. T1 and T2 have allmost the same prognosis for spreading or reccurence, lymphovascular invasion increases risk of spreading for less than 2% (if any), rete invasion is also higly debatable if it increases the risk, overall T2, rete and lymphovascular invasion sure do have some impact of risk increasing but this can't be reduced to single case decision making. Especialy that there are a long time repercussions of radiation.
                            Last edited by Harxxony; 09-17-19, 04:37 AM.
                            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                            Waiting...

                            Comment


                            • #15
                              I’m not a doctor, but radiation seems odd. I’ve seen it done as treatment for seminoma after a CT scan shows something, but never as adjuvant treatment. I could be wrong but I’ve seen adjuvant carboplatin for seminoma is CT is clear, but never radiation.
                              3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/20/19 All clears up to here!

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