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  • Bilateral seminoma with retroperitoneal mass

    Just got hit with the news on 3/22/17. I'm 31 and pseudo-single. Went to my primary care provider for right abdomen/flank and groin pain from what I though was blue balls, overexertion, strain, or a hernia. She thought I might have appendicitis and so sent me to the ER. An ultrasound and CT scan that night revealed a 7 cm x 5cm retroperitoneal mass initially thought to be lymphoma which surrounds but does not encroach upon, touch, or harm a lesser vein. They used "oncology referral" instead of "cancer" and sent me home with instructions to complete a biopsy.

    I had my sedated fine needle aspiration biopsy (because of mass location) a few days later. Results took 10 days and came back as seminoma from pathology one and in-network pathology two. They told me all of the sample came back as seminoma but it was a small sample. Apparently, I was referred to a tumor board who is in control of my treatment.

    I underwent a testicular ultrasound shortly thereafter. Bilateral masses, right greater than the left, both suggestive of seminoma.

    Then I did the PET scan. I was sick with a sore throat and coughing up seasonal green crap the size of half of my pinky finger like I have done for years. The scan confirmed the retroperitoneal mass, testicular masses, and also showed avid tonsils and three enlarged cervical lymph nodes. My oncologist and ENT physician thought it was probably inflammation but sent me for work-up regardless.

    I had my fine needle biopsy with ultrasound of my cervical lymph nodes this morning. Radiologist did not seem to know a whole lot about my file and didn't tell me it was inflammation but did ask me how I found out I had cancer.

    My urologist tells me the right one has to go. The left one is in the fate of the tumor board. My oncologist suggested partial orchiectomy of the left. The urologist suggested this was risky. From what I read, partial orchiectomy is a consolation prize for young people like myself who want the option of kids. Sperm banking has commenced. My orchiectomy is coming after my chemo because of the size and location of the abdominal mass.

    My oncologist told me Stage II based upon current information. BEP x3 starts on 4/10. He mentioned "good prognosis" but every doctor is calling my case "advanced" and the fact that I am in the hands of a "tumor board" suggests my condition is a little complex.

    Basically, I'm shocked. I moved to a different city for my job and to potentially find a way to make my pseudo-partner a little happier in life. This diagnosis has all but destroyed my plans.

    Any help, insight advice, support, etc. on what happens next is appreciated. I understand chemo will be rough. Not sure about the chronology of treatment or even if my staging is accurate. Also freaked out about the cervical lymph nodes and tonsils that no one is reassuring me about.

    My tumor markers are normal apparently. My oncologist said this was odd.
    Last edited by ottovonwhackjob; 03-31-17, 08:54 PM.
    2/2017 - Right groin and flank pain (thought it was blue balls or a strain)
    3/2/17 - ER discovers 7.5 x 6.5 x 3.0 mass around IVC
    3/6/17 - Fine needle aspiration of mass finds seminoma
    3/26/17 - Dx R seminoma with left tagalong, stage II (ish)
    4/10/17-6/6/17 - 3x BEP
    7/14/17 - CT Scan shows abdominal mass reduced to 0.5 cm
    7/25/17 - Bilateral orchiectomy, scarring, fibrosis, and necrosis only
    10/6/17 - Surveillance

  • #2
    Otto,
    Welcome to the TC club. I can tell you there are many capable people on this forum who can offer advice. Are you in the US?

    Since things are moving rapidly, one thing I can suggest you do before chemo is go to your dentist and get any work needed taken care of. I pre-emptively did sealants on my molars.

    I'm guessing the docs main concern is the size. Is the plan chemo -> surgical resection of any residual ?
    Age 31 - Portland, OR
    01NOV16- Pain in right testicle, palpable mass
    13NOV16- R I/O. Markers normal
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    06DEC16 - CT scan clear
    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
    03JAN17- Ended 1xBEP; start surveillance
    18MAR17-2nd pathology report shows 90% EC , 10% seminoma

    Comment


    • #3
      I am in the US. San Francisco, CA. Thankfully, I had a bunch of dental work done last month. \

      Yes, I think the size is the issue. It's "large." The plan is chemo followed by orchiectomy(s) about a month after. My oncologist thinks it is too soon to tell if they will need to go into my abdomen. He did not explicitly deny it would be necessary though.


      2/2017 - Right groin and flank pain (thought it was blue balls or a strain)
      3/2/17 - ER discovers 7.5 x 6.5 x 3.0 mass around IVC
      3/6/17 - Fine needle aspiration of mass finds seminoma
      3/26/17 - Dx R seminoma with left tagalong, stage II (ish)
      4/10/17-6/6/17 - 3x BEP
      7/14/17 - CT Scan shows abdominal mass reduced to 0.5 cm
      7/25/17 - Bilateral orchiectomy, scarring, fibrosis, and necrosis only
      10/6/17 - Surveillance

      Comment


      • #4
        One other thing came to mind: Suggest asking about getting testosterone level assessed prior to starting chemo & orchiectomy. This way you have some number that reflects what is "normal" for you in case of any future testosterone replacement therapy. The docs don't seem to prioritize this as its not important to immediate treatment of TC.
        Last edited by mcintoda; 04-01-17, 10:13 PM.
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        06DEC16 - CT scan clear
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

        Comment


        • #5
          Here's some info about Stage II disease:

          Very readable European Association of Urology TC Guideline:

          https://uroweb.org/wp-content/upload...Cancer_LR1.pdf

          "In stage IIA/B, chemotherapy; with 3 courses of BEP or 4 courses of etoposide and cisplatin (EP) in cases with contraindications to bleomycin is an alternative to radiotherapy. There are no randomised studies comparing radiotherapy versus chemotherapy. Although more toxic in the short term, 3 courses of BEP or 4 courses of EP achieve a similar level of disease control [162]. One population-based study with 67 stage IIB patients reported a relapse free-survival of 100% after a median of 5.5 years of follow-up [102]. Single-agent carboplatin is not an alternative to standard EP or BEP chemotherapy for metastatic disease "

          "Metastatic disease (stage IIC and III) 7.4.3.1 Primary chemotherapy 7.4.3.1.1 Good prognosis risk group - SGCT For metastatic seminoma, only very limited data are available from randomised trials and they indicate that a cisplatin-based regimen should be preferred to carboplatin chemotherapy [177]. Recent data indicate that EP x 4 result in cure in almost all cases of good-prognosis seminomatous germ cell cancers [178]. Standard treatment in good-prognosis seminoma should therefore be 3 x BEP or 4 x EP. In the case of contraindications to Bleomycin, EP x 4 should be given [179]. Post-chemotherapy masses should be managed as described in Section 7.4.4.1. "


          It seems that even in non-seminoma Stage IIC is treated the same way. 3xBEP is very effective against both seminoma and non-seminoma.
          Last edited by mcintoda; 04-01-17, 06:28 PM.
          Age 31 - Portland, OR
          01NOV16- Pain in right testicle, palpable mass
          13NOV16- R I/O. Markers normal
          27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
          06DEC16 - CT scan clear
          09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
          03JAN17- Ended 1xBEP; start surveillance
          18MAR17-2nd pathology report shows 90% EC , 10% seminoma

          Comment


          • #6
            "Tumor board" doesn't mean your case is overly complex. They meet to discuss all sorts of early stage testis cancer as well.
            Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

            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


            • #7
              I agree with RKJD. I believe tumor boards are fairly common & give the docs a chance to discuss the new cases & reach consensus on treatment required. I don't think I would personally allow a partial I/O. Those traitors are trying to kill you, hit them hard.

              Also, while your case is definitely advanced, it still has a good prognosis. The chemo really is that good these days.

              Please keep us posted as you find out more & feel free to ask any questions you might have.

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

              Comment


              • #8
                Thank folks! Do you know how often you generally meet with the oncologist? My next appointment is the day before day 16 of my first BEP cycle.
                2/2017 - Right groin and flank pain (thought it was blue balls or a strain)
                3/2/17 - ER discovers 7.5 x 6.5 x 3.0 mass around IVC
                3/6/17 - Fine needle aspiration of mass finds seminoma
                3/26/17 - Dx R seminoma with left tagalong, stage II (ish)
                4/10/17-6/6/17 - 3x BEP
                7/14/17 - CT Scan shows abdominal mass reduced to 0.5 cm
                7/25/17 - Bilateral orchiectomy, scarring, fibrosis, and necrosis only
                10/6/17 - Surveillance

                Comment


                • #9
                  I met with mine at the start of each of my cycles. It wasn't my main oncologist, but it was one of the junior ones.

                  If there was a problem like a cough or something then I saw them at some of my bleo days to discuss.
                  24 year old diagnosed 6/11/16
                  Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                  Pre/o CT Clear
                  Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                  Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                  Post-op CT with one enlarged lymph node - 1.5x1cm
                  Borderline stage 2B/3B
                  BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                  CT and markers clear - in remission - 28/2/16

                  Comment


                  • #10
                    Sperm bank NOW! You should have both removed if they both contain cancer. Don't do a partial.

                    All you need is a few viable sperm to have a future child. My IVF baby was just born 3 days ago. This was from banked sperm from 2015. My single testicle was removed in 2015 a couple days after banking.
                    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                    7/7/15: bHCG 56, AFP 42, LDH 322
                    7/13/15 - 9/18/15: 4xEP
                    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                    4/20/16: RPLND @ IU - teratoma only!
                    9/18/2017 all clears up to this date!

                    Comment


                    • #11
                      Also, while you have a battle ahead, the odds are that you will beat this!
                      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                      7/7/15: bHCG 56, AFP 42, LDH 322
                      7/13/15 - 9/18/15: 4xEP
                      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                      4/20/16: RPLND @ IU - teratoma only!
                      9/18/2017 all clears up to this date!

                      Comment


                      • #12
                        OttoVon, just a comment that it is fairly common ( I forget %) for Seminoma to not express the tumor markers AFP or bHCG. With significant tumor burden a less specific marker LDH can become elevated. I had several large seminoma abdominal masses largest ~8cm x 7cm and my LDH was only slightly elevated. This should not surprise your Dr.'s. I also suspect that reactions to your case as "advanced" are more to do with the bulk of tumor volume vs. the disease progression a 7cm tumor is a "big boy" but has been generally stated on this forum by a number of folks BEP x 3 is most often highly effective at melting those big ol seminoma masses like butter.

                        Comment


                        • #13
                          Thanks guys! I've done three sperm banking sessions so far. Count is 200,000 for my longest period of abstinence so looks like I am adopting if I want kids but I will cross that bridge when it comes.

                          My oncology appointment is actually the day before my last bleo session of my first cycle. Got the date wrong apparently.

                          My neck lymph node pathology came back. No signs malignancy!

                          Now if I can avoid that RPLND....
                          2/2017 - Right groin and flank pain (thought it was blue balls or a strain)
                          3/2/17 - ER discovers 7.5 x 6.5 x 3.0 mass around IVC
                          3/6/17 - Fine needle aspiration of mass finds seminoma
                          3/26/17 - Dx R seminoma with left tagalong, stage II (ish)
                          4/10/17-6/6/17 - 3x BEP
                          7/14/17 - CT Scan shows abdominal mass reduced to 0.5 cm
                          7/25/17 - Bilateral orchiectomy, scarring, fibrosis, and necrosis only
                          10/6/17 - Surveillance

                          Comment


                          • #14
                            Originally posted by ottovonwhackjob View Post
                            Thanks guys! I've done three sperm banking sessions so far. Count is 200,000 for my longest period of abstinence so looks like I am adopting if I want kids but I will cross that bridge when it comes.

                            My oncology appointment is actually the day before my last bleo session of my first cycle. Got the date wrong apparently.

                            My neck lymph node pathology came back. No signs malignancy!

                            Now if I can avoid that RPLND....
                            200,000 is PLENTY. I had about 10x less (~20,000/ml). I did 2 sessions and stored 14 vials total. The IVF ICSI process literally only takes 1 viable thawed sperm. So your count can be extremely low. IVF is expensive and a bit of work, but definitely a viable option. Adoption isn't cheap either or any less work probably!

                            Good to hear on the neck node!

                            Avoiding the RPLND is nice, but if its necessary, don't be too afraid of it. Its just another bump in the road.
                            6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                            6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                            7/7/15: bHCG 56, AFP 42, LDH 322
                            7/13/15 - 9/18/15: 4xEP
                            10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                            10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                            4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                            4/20/16: RPLND @ IU - teratoma only!
                            9/18/2017 all clears up to this date!

                            Comment


                            • #15
                              Hi Otto, i had a seminoma too, but stage IIIC, i hope you get well, keep us update please.
                              Take care friend
                              22/10/2015: Diagnosis: pure Seminoma hcg 13268/ 20x25 mm mass in my left testicle
                              23/10/2015: Left orchiectomy
                              28/10/2015: TC torax/abdomen/pelvis 3 focal liver lesions (0,7cm, 0,7cm and 1,0cm)
                              18/11/2015: started 4xBEP treatment
                              31/01/2016: finished 4xBEP treatment

                              Comment

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