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  • Hello there

    Hey everyone.

    I'm 41. Just gave up my apartment and job a few weeks ago intending to travel for awhile with my girlfriend. Then last week happened to notice a hard lump on my right testicle. No other symptoms that I had noticed. I went to see my doctor who gave me an ultrasound and found a 2 cm solid mass that she said "looks like its been there awhile". I had an appointment with a urologist today who drew tumor markers which are still pending and scheduled me for a right radical orchiectomy on Monday. So now I'm scrambling to get my job and apartment back so that I don't lose my health insurance and can get this dealt with. One question I had was that from the limited reading I've done so far on here, it seems that most people are given CT scans prior to surgery, which may then result in the need to take out lymph nodes when performing the orchiectomy. Is this right? When I asked my urologist about the scan and how he would know if nodes were involved, he told me that he likes to do the orchiectomy first, and the scan after which determines if he will go back to remove lymph nodes. Also wondering if someone could break down for me exactly what information the tumor markers provide and what the results mean for me. Anyways I very much appreciate all of you who have been, and are currently going through this sharing information and knowledge. Thanks so much.

  • #2
    First off, welcome to the forum no one wants to join!

    You've got some misinformation.Some docs do a CT prior to I/O surgery & some after. The only advantage of doing it before is you have a better idea earlier of what may lye ahead.Even if the CT turns out positive for enlarged nodes, it seems it's easier to know than to be waiting for results.They NEVER remove nodes during the I/O surgery, that incision is in a completely different area.

    I'm going to post some info from the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossA ) about markers:
    Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.



    Human Chorionic Gonadotropin (hCG), beta subunit - In adults, significant elevation of levels of beta HCG occurs only during pregnancy and in patients with trophoblastic neoplasms or nonseminomatous germ cell tumors. As a result, it is used as a tumor marker. Essentially, 100 per cent of patients with trophoblastic tumors and 40-60 per cent of patients with nonseminomatous germ cell tumors, including all patients with choriocarcinoma, 80% of patients with embryonal carcinoma, and 10-25% of patients with pure seminoma are diagnosed with elevated levels of beta HCG. The serum half life of beta hCG is 24 to 36 hours, which implies that elevated concentrations should return to normal within 5 to 7.5 days after surgery if all tumor is removed. Please note that the normal HCG level is usually less than 5 miu/ml. Also note that the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone or because of marijuana use.



    Lactate dehydrogenase - The enzyme LDH is found in many body tissues, especially the heart, liver, kidney, skeletal muscle, brain, blood cells and lungs. It often becomes elevated in advanced cases of testicular cancer. Clinically, it is useful as marker of advanced or bulky disease and, when elevated, as a marker for seminoma.

    Blood markers are really more useful in staging the TC after I/O, If they fall at the expected rate once the I/O is over, th odds are good the cancer is gone, if they stay the same or rise, further treatment is likely indicated. They are also used during chemo to monitor how well it's working.At this stage, you are mostly getting a baseline ( although high markers often indicate cancer, the Dx is not made from markers alone)

    Also, LDH isn't truly a marker, as many types of inflammation in the body can elevate it. However sometimes it is useful with other tests to help decide what to do next.

    Also be aware, there will likely be a lot of waiting over the next few weeks/ months, it is often the worst part of a cancer Dx. Not knowing what's going on is always worse than knowing.

    Feel free to post back with any other questions that pop up,

    Dave
    Last edited by Davepet; Today, 01:48 AM.
    Last edited by Davepet; 03-01-17, 03:19 AM.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      Thank you so much Dave. That is incredibly helpful.

      Comment


      • #4
        Glad it helped, please keep us posted as you learn more. As always, if you have questions, just ask. We will do our best to help.

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

        Comment


        • #5
          BAGELISTA~ Sorry to welcome you here. i hope you are able to resume your job and get your apartment back.
          Dave provided some great information. I agree with him that the waiting is often difficult. Keep us updated.
          17 year old Grant dx 12/21/16
          pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
          pre/o CT Scan 12/22/16 normal
          r/o 12/22/16
          Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
          PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

          -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
          2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
          BEP x 3 1/27/17
          Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
          2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
          Post Chemo RPLND 5/8/17: pathlogy Teratoma , 3 large masses removed

          Comment


          • #6
            Hello all,

            Just posting a follow up, and would welcome any insight. My LDH was 125, and I didn't see my other tumor markers but were told they were all normal which I took as a good sign. I had my orchiectomy on Monday, and recovery has been much easier then expected so far. I just got the call from my Doctor that the pathology is back and indicates a classical seminoma which I guess explains the normal tumor markers . I'm posting the results below. The part that flips me out on the pathology report is the mention of lymph/vascular invasion. I'm scheduled for a CT scan and xray on the 17th, but that has me worried until I find out for sure. Not sure if that is an expected finding or not. Thanks in advance.

            Surgical Pathology Report

            FINAL PATHOLOGIC DIAGNOSIS
            A) TESTICLE, RIGHT, ORCHIECTOMY
            - SEMINOMA, 2.4 CM
            - TUMOR INVADES INTO HILAR SOFT TISSUE BUT DOES NOT INVOLVE
            THE TUNICA VAGINALIS
            - LYMPHOVASCULAR SPACE INVASION IS PRESENT
            - SURGICAL MARGINS ARE NEGATIVE

            JAMES CRAIG MATHEWS M.D.
            ** Report Electronically Signed by JCM **
            Synoptic Report
            A. TESTIS RESECTION, TUMOR - R:
            Procedure:
            Radical orchiectomy
            Specimen Site:
            Testis structure (body structure)
            Tumor Site:
            Testis structure
            Specimen Laterality:
            Right
            Tumor Focality:
            Unifocal
            Tumor Size:
            Greatest dimension of main tumor mass: 2.4 cm
            Histologic Type:
            Seminoma, classic type
            Macroscopic Extent of Tumor:
            Invades hilar soft tissues
            Microscopic Tumor Extension:
            Rete testis
            Hilar fat
            Margins:
            Spermatic cord margin uninvolved by tumor
            Other margin(s) uninvolved by tumor:
            Lymph-Vascular Invasion:
            Present
            Primary Tumor (pT):
            pT2: Tumor limited to the testis and epididymis with
            vascular/lymphatic invasion, or tumor extending through the tunica
            albuginea with involvement of the tunica vaginalis
            Regional Lymph Nodes (pN):
            pNX: Regional lymph nodes cannot be assessed
            No nodes submitted or found
            Distant Metastasis (pM):
            Not applicable
            *Best TUMOR Block(s) If Further Studies Are Needed:
            A2
            Is this the first tissue diagnosis at Kaiser Permanente for this
            malignancy? Reply below:
            YES
            -------------------

            Comment


            • #7
              The LVI for seminoma means very little, as opposed to the case with non-seminoma. You would be a great candidate for surveillance.
              Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

              7/1/2015: felt tiny lump on side of R testicle
              7/30/2015: Ultrasound shows 2 intra-testicular masses.
              7/31/2015: tumor markers normal, CXR clear
              8/5/2015: R orchiectomy
              8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
              8/14/2015: CT abdomen/pelvis clear, Stage 1b
              8/24/2015: started 1 x BEP

              Comment


              • #8
                My ct scan and chest x-ray were all clear and I'm breathing alot easier! Recovering really well from the orchiectomy though with a ton of numbness to the inside of my right leg, which sounds normal. Waiting to get an appointment to meet with the oncologists

                Comment


                • #9
                  My ct scan and chest x-ray were all clear and I'm breathing alot easier! Recovering really well from the orchiectomy though with a ton of numbness to the inside of my right leg, which sounds normal. Waiting to get an appointment to meet with the oncologists

                  Comment


                  • #10
                    Some guys seem to get more numbness than others, it usually goes away in time.

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

                    Comment


                    • #11
                      The side I had my I/O on was numb for a while too. You surgeon may have place in an analgesic to help with pain for a while. That's what mine did. However, I still have some reduction in sensitivity there after 3 months that may take a long time to come back or may just be permanent.
                      11/16/16 - Something feels off,maybe I have a hernia
                      11/23/16 - "You may have cancer"
                      12/13/16 - "You most likely have cancer"
                      12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
                      12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
                      1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
                      1/23/17 - Started RT for 19 sessions
                      2/16/17 - All done with radiation

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