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  • TC - Orchiectomy done Which treatement?

    Hi there! I am 36 year old living in Chicago. This is my first post but I've been reading the boards since I found a lump in the end of April. Reading through the various posts helps me a lot outlining the steps as I am very eager to put this behind me. Here is my story:

    04/29/2016 Felt a lump and hardening of the left testicle

    05/11/2016 Appointment with GP

    05/13/2016 Ultrasound and diagnosis of TC

    05/18/2016 Sperm bank

    05/19/2016 Appointment with Urologist, Markers: AFP: 2.2 ng/ml (0.0-13), LDH 360 Unit/L (0-271), HCG 0.4 mlU/ML (0.0-3.0)
    CT Chest & Pelvis: Clear; CT Abdomen: Small retroperitoneal lymph nodes are present with the largest measuring 8 mm internal axis diameter. No lymph nodes measuring greater than 1 cm seen in the upper abdomen.
    Combined impression for CT Chest, Abdomen, and Pelvis: Sub-centimeter retroperitoneal lymph nodes. This finding is of uncertain significance in the setting due to the small size. However, given the history of TC, short term follow up in three month is recommended as metastatic disease cannot be entirely excluded. Otherwise unremarkable CT evaluation of the Chest, Abdomen, and Pelvis.

    05/20/2016 Left Inguinal Orchiectomy

    05/23/2016 Pathology Report: pT1
    - Malignant mixed germ cell tumor, measuring 3.1 x 2.0 x 0.6 cm. composed of Embryonal carcinoma (90%) and Yolk sac tumor (10%).
    - Tumor involving rete testis, epididymis and tunica albuginea.
    - Intratubular germ cell neoplasia, unclassified (ITGCN).
    - Uninvolved testicular parenchyma with active spermatogenesis.
    - Spermatic cord surgical margin free of tumor.
    - Tumor Invasion: Rete Testis (Identified), Tunica Albuginea (Identified), Spermatic Cord (Not identified), Lymphovascular Invasion (Not identified), Margins (Negative)

    05/28/2016 Post I/O Markers: AFP: 2.1 ng/ml (0.0-13), LDH 155 Unit/L (0-271), HCG 0.4 mlU/ML (0.0-3.0)

    06/07/2016 Met with Medical Oncologist at Northwestern Unversity Hospital, recommended only surveillance with follow-up CT scan & marker check-up in the beginning of September

    06/08/2016 Post-op appointment with Urologist at NWH, agreed with oncologist on surveillance being the best treatment given the information so far. He thinks the chance of recurrence is about 35% or maybe slightly higher (I thought it was about 50% due to EC), and reinforced the high probabilty that I could be cured by surgery only. He also mentioned the lymph nodes could just be reacting to the cancer or something else in the body, and not necessarily contain cancer cells.

    06/14/2016 Met with a Medical Oncologist at University of Chicago hospital; looking at the CT scan he thinks that although smaller than 0.8 cm given the location (the expected first landing zone for TC) the probability of these being cancerous is higher than 90% and thus recommends 4EP, 3BEP or 2BEP in the order of his preference and start chemo in the week of 07/11/2016

    I have been reading through the forum and various articles and I thought I will be offered either surveillance or adjuvant chemoterapy. But these two opinios are quite opposite and on the two extremes!

    I am scheduled to meet with Dr. Foster and Dr. Einhorn on 06/28/2016 for final opinion.

    Until then, I wanted to see what you guys think of the opinions so far, and if I might be given the option of 1-BEP.

    Weighing the probabilities of recurrence, I think I will choose 1-BEP if offered. Psychologically, I think I am ready to have the overtreatment of 1-BEP than undertreatment and consequent 3-BEP.

    Thank you!

  • #2
    Hey Mate -- consult the docs and be informed - If you fit with surveillance I would run with that but if you are happier with some form of treatment discuss that too and be comfortable with the direction taken
    >>>>>>>>>
    TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
    TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

    Comment


    • #3
      Thanks for the prompt reply. To be honest, I was stunned by recommendation of the medical oncologist at UC to start higher dosage chemo asap and don't even wait to see if the lymph nodes are going to change in size.

      Comment


      • #4
        I'm surprised by that recommendation as well. That's a borderline lymphnode and your markers are normal. Also, from what I understand, no lympovascular invasion puts you below the 50% risk group. You may also consider primary RPLND at this time. that's the only definitive way to determine whether that node is actual cancer. This could prevent you from getting any chemo you may not need and, in some cases like yours, the RPLND could be curative. If you haven't read about it yet, the RPLND is a serious surgery so do your research on it.

        Comment


        • #5
          I agree. With your current status that is borderline. 3 or 4 xBEP would be overkill in my opinion.

          If you are not comfortable with surveillance; then yes, 1 or 2 x BEP may be good for you.

          However, if you do seriously consider surveillance I would maybe try to get a checkup in before September, maybe try for every 4-6 weeks for the first few months. EC can go fast; if you checkup more frequently it should be caught sooner.

          Either way, only you can decide what's best for you.

          We can give our experiences and opinions and some facts to help you with your decision. It seems to me you are already doing the best thing by getting second opinions and seeing the best TC docs around....you'll be fine.

          - Matt

          March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
          March 13th: Left IO 100% Classic Seminoma
          6.3 x 5.1 x 3.8 cm, no invasion of anything
          LDH never fully normalized
          Stage: IS
          Watchful Waiting
          May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
          May 12th: started 3xBEP
          Neupogen during Cycle 2 and 3
          July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
          August 4th: Post Chemo CT/PET scan
          September 4th: Port removed
          Jan 9th 2019: 4.5 YEARS ALL CLEAR !

          Comment


          • #6
            I disagree with your Oncologist in Chicago. Full dose chemo should only be used when one is sure there is metastatic disease and there are no other options. You do have a borderline lymph node, so an RPLND may actually be the best way to go here. I don't want you to do 1 x BEP and have it not be sufficient.

            Although your pathology does not have LVI, it does have rete testis invasion and invasion of the tunica albuginea. These factors haven't been quantified so well in large studies, but some small studies have shown these to increase the risk of relapse.
            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
              Originally posted by ALF681 View Post

              06/14/2016 Met with a Medical Oncologist at University of Chicago hospital; looking at the CT scan he thinks that although smaller than 0.8 cm given the location (the expected first landing zone for TC) the probability of these being cancerous is higher than 90% and thus recommends 4EP, 3BEP or 2BEP in the order of his preference and start chemo in the week of 07/11/2016
              This is something of particular interest to me. For example, how often does one without TC (just a regular male) have any enlarged lymph nodes in that specific location? Would cancer in our testicle really cause enlarged lymph nodes in our upper abdomen if it had not in fact spread there? Considering that this particular spot is the typical landing zone for TC, it's always been a curiosity of mine.

              With men that have TC, how often are lymph nodes found in that specific area that do NOT end up being spread from TC? This was one thing that concerned me when I initially saw my 1cm lymph node from the CT scan, yet the doctor still said "surveillance." I realize that lymph nodes can be enlarged in any area of the body for any random reason, but it would just seem like that when a lymph node or two pops up in this exact area (the area known for a landing spot of TC), what are the chances of it actually being from something else?
              03/10/16 - Something is seriously wrong
              03/11/16 - Ultrasound shows 7cm mass
              03/15/16 - CT scan: enlarged 1.5cm retroperitoneal node
              03/15/16 - Markers: HCG 2, LDH 220, AFP 2.8
              03/21/16 - Right I/O, Path: classic seminoma tumor 7.1cm (Stage IIA)
              05/03/16 - Radiation treatment started: 18 days/30 Gy

              Comment


              • #8
                Hey,

                Agree with the others.

                - 3 x BEP and 4 x EP are overtreatment actually
                - 1 x BEP or 2 x BEP can actually represent undertreatment if lymph nodes are neoplasic by nature.
                - RPLND will provide definitive answer, but can represent overtreatment.
                - Lymph nodes can be reactional due to orchiectomy - and your tumor markers are negative.
                - Another option to consider is to redo a CT-scan 8 - 12 weeks after the first one to see how those lymph nodes behave.
                - Consider also a second reading on the pathology specimen for LVI - high EC component as you have is highly correlated with LVI.

                In my case (pure EC), my initial 8 mm lymph node grew to 14 mm in about 3 months (my HCG was in the upper level of normal initially).

                My gut feeling is that Dr Einhorn will recommend surveillance in your case. He recommend so to me with my 8 and 9 mm lymph node and re-do scan in 12 weeks. I relapsed, but sadly there's no way now to identify patients who will and those who won't. But no matter what you choose, you'll get an 99 % cure rate.

                Good luck and keep us posted.

                Jean-Philippe
                December 15, 2015 : Right I/O. Markers normal.
                December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
                January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
                February 2016 : Markers normal.
                March 2016 : Markers normal.
                April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
                April 25, 2016 : Happy birthday ! Relapsed confirmed.
                May 2, 2016 : BEP x 3 begins.
                July 3, 2016 : BEP x 3 ends.
                July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
                December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
                June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

                Comment


                • #9
                  Thanks for the feedback. It definitely helps to hear other opinions than just my oncologists.

                  The second pathology report and formal treatment recommendation from UC was sent today.
                  1. Histologic type - Embryonal carcinoma - 90%, Yolk sac tumor - 10%
                  2. Tumor size: 3.1 cm (per report).
                  3. Extent of involvement: Rete testis: Positive for tumor; Tunica albuginea: Negative for tumor; Tunica vaginalis; Negative for tumor; Epididymis: Negative for tumor; Scrotum NA.
                  4. Intratubular germ cell neoplasia: Present.
                  5. Vascular invasion: Not identified.
                  6. Proximal margin: Negative for tumor.
                  7. pTMN: pT1,NX,MX.
                  The formal recommendation that UC oncologist put in the report is a recommendation of 3 cycles of BEP or 4 cycles of EP.


                  Originally posted by stayafighter View Post

                  This is something of particular interest to me. For example, how often does one without TC (just a regular male) have any enlarged lymph nodes in that specific location? Would cancer in our testicle really cause enlarged lymph nodes in our upper abdomen if it had not in fact spread there? Considering that this particular spot is the typical landing zone for TC, it's always been a curiosity of mine.

                  With men that have TC, how often are lymph nodes found in that specific area that do NOT end up being spread from TC? This was one thing that concerned me when I initially saw my 1cm lymph node from the CT scan, yet the doctor still said "surveillance." I realize that lymph nodes can be enlarged in any area of the body for any random reason, but it would just seem like that when a lymph node or two pops up in this exact area (the area known for a landing spot of TC), what are the chances of it actually being from something else?

                  It's quite possible that observing the location and pattern (no enlarged nodes observed on the right side in my case) of the nodes given the history of left TC to assign some probability of these being cancerous. However, I didn't find any studies or papers that cover this topic or even assign probabilities. My understanding is that since TC is rare, it is hard to make conclusions and isolate the different factors that can be important in each case. Thus, the oncologists base their treatment plan on their experience when the case is borderline. If this is the case, then it make sense in borderline cases to always get the opinion of people that treat a lot of TC patients like Dr. Foster and Dr. Einhorn. This is one of the main questions that I will be asking them.

                  Meanwhile, I am trying to get more educated on the topic. Any references will be highly appreciated.


                  On a separate topic, how did you guys lay out the info with your employer that you will be out for some time due to chemo. I work in a highly competitive job, so not sure if I want to share all the info with my colleagues (although after chemo with the hair lost it will be obvious ). Just curious what are your experiences?

                  Comment


                  • #10
                    Originally posted by ALF681 View Post
                    On a separate topic, how did you guys lay out the info with your employer that you will be out for some time due to chemo. I work in a highly competitive job, so not sure if I want to share all the info with my colleagues (although after chemo with the hair lost it will be obvious ). Just curious what are your experiences?
                    I was not working when I went through chemo, soI didn't have to deal with that. Had I been working, the contractor I worked for at the time would likely have bent over backwards to accommodate me.

                    My advice in your case is to just do what you need to do & tell your employer about it. If you need chemo, it's not like you have any options, after all. If there is any professional fallout, deal with it after treatment. Right now, your only "job" is beating TC. If your currant employer isn't on board with that, getting TC may turn out to be a good thing for you down the road.Stranger things have happened.

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

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