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  • Advice!!

    Hello to all! I hope you had a wonderful holiday season and are coming into the new year splendidly!

    I am very new to forums in general and most definitely new to the testicular cancer life. I was recently diagnosed with TC and had my right testicle taken out via I/O. I have my first follow up appointment in 3 days.

    Thus far, all I really know is that the pathology report came back showing it was non-seminoma, to what extent and stage, I do not know.

    I have been doing a tremendous amount of research and my main question and concern is: What are some good questions to ask my doc to help me decide on my treatment from here? From my research I get three basic options; surveillance, rplnd, and chemo.

    I am really just trying to get some experienced and educated advice on specifics to ask to really help me make the best possible choice. Thank you all for your time!

    -Louie

  • #2
    hi there

    main questions for now that will be addressed by your doc anyway;

    what is the tumor type, what was the tumor environment
    what are markers
    are there mets? if yes, where?

    Based on this they will give one or two options to consider... they will pretty much guide you. If its a complicated case( rarely with TC) you might want to get a second opinion.

    Comment


    • #3
      LOUIE C-SILVA~ sorry you are able to post here. Sanis already shared major questions. You are in the waiting stage unfortunately. Another question to ask if you do need to see an Oncologist: how many cases of TC have you treated, and when was last one. Depending where you are located that answer may only be a few a year. Update us.
      Son Grant
      dx 12/21/16 at age 17

      BEP x3
      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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
      Grant is enjoying his senior year in High School Cancer Free!

      Comment


      • #4
        Originally posted by Louie C-Silva View Post
        I have been doing a tremendous amount of research and my main question and concern is: What are some good questions to ask my doc to help me decide on my treatment from here? From my research I get three basic options; surveillance, rplnd, and chemo.

        I am really just trying to get some experienced and educated advice on specifics to ask to really help me make the best possible choice. Thank you all for your time!

        -Louie
        First. you need to know what tumor type, *exactly* they found. "non seminoma" covers three or more types, each with varying problems.You need more specific info.

        Second, you need a CT scan as soon as possible, to determine if it has spread to your abdominal area.

        Third, you need blood tests to determine if any tumor markers are elevated.

        All of this is needed to determine staging, and what treatment may be needed.

        Once we know that, folks here can help you guide your treatment going forward.

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

        Comment


        • #5
          Thank you all for your time. Tomorrow is the day I should be getting all info needed!

          Comment


          • #6
            Hello,

            I just got back from the doctors office. Pathology report was Nonseminoma (teratoma) It was 3.9 cm. Shows to be restricted to the testicle. Tumor markers were negative. Pathology report seemed pretty vague in my opinion. He is sending me to an oncologist next week.

            I had pretty high blood pressure (not concerning), but he said the ct scans shows abnormality in the mesentery of my stomach lining. They are attributing it to Mesentric Adenitis. Should I be comfortable with that?


            Any advice? He said all three of my previously stated treatment options are viable.

            Comment


            • #7
              Did they say 100% Teratoma? That is extremely rare.
              This is what the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossT ) has to say about teratoma:

              Teratoma - (1) Strictly speaking, teratoma is a benign growth. It is an odd sort of tumor in that it is basically composed of a number of different normal types of tissue, growing in abnormal places. I say strictly speaking it is benign, but it can act like a malignant tumor and spread. It is most commonly discussed in the post-chemo situation where the doctors want to remove masses left behind by the chemo because they may have teratoma in them. They do this because any tumor can grow and cause problems later on, plus teratoma tumors can become cancerous themselves, and those cancers are not as easy to treat as germ cell tumors. Because teratoma is made up of normal cells, chemotherapy does not affect it. (2) In the UK, teratoma is synonymous with nonseminoma. Here is a cross reference between the AFIP/World Health Organization and the UK classifications:
              British WHO
              Teratoma Non seminomatous germ cell tumour
              teratoma differentiated mature teratoma
              malignant teratoma intermediate (MTI) teratocarcinoma, embryonal carcinoma with teratoma
              malignant teratoma undifferentiated (MTU) embryonal carcinoma
              yolk sac tumour yolk sac tumor, endodermal sinus tumor
              malignant teratoma trophoblastic choriocarcinoma
              So unless you are in the UK, your options are surveillance if the CT is clear or RPLND if it is not. Some might suggest the surgery even with a clear CT.100% teratoma is unaffected by chemo.

              Dave
              Last edited by Davepet; 01-10-18, 05:27 PM.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Davepet:

                It says stage: pT1, Nx

                Positive diagnosis for intratublar germ cell neoplasia.
                PostPubertal Teratoma- predominately solid mass with partial cystic mass.
                Last edited by Louie C-Silva; 01-10-18, 06:54 PM.

                Comment


                • #9
                  I hope someone with 100% teratoma can chime in, but RPLND or other surgery will be needed. Are you in United States or elsewhere?
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
                  Grant is enjoying his senior year in High School Cancer Free!

                  Comment


                  • #10
                    hi Trekga, i dont think they normally do an RPLND (being a major surgery) if there is no met on the CT .. mind you - if something starts to grow they can still cut it out as it tends to grow slowly. just my 2 cents.

                    VERY important: was it mature or immature teratoma?

                    Comment


                    • #11
                      Hello everyone,

                      The urologist called me earlier and said that he is requesting to send the specimen out to another pathologists to get a second opinion because after reviewing what the path report said he found it “odd” and wants more clarification himself.. this has me concerned.

                      Comment


                      • #12
                        Sanis, he said immature post pubertal teratoma.

                        Comment


                        • #13
                          Trekga:

                          I am north of New York City about 60 miles. I am requesting to be referred to Memorial Sloan Kettering in NYC.

                          Comment


                          • #14
                            A second opinion on the path report isn't a bad idea. As I said earlier, 100% teratomais not common.

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

                            Comment


                            • #15
                              Glad you are getting a referral to Sloan Kettering. I am not a doctor, but RPLND can be used in some stages when chemo is not effective. I do know my son was offered RPLND before his cancer spread, thought he did not have pure Teratoma. Primary RPLND is much easier than post chemo RPLND which my son ultimately had in May to remove lots of Teratoma, most of which was NOT visualized on the many CT Scans before and after chemo!
                              Wish you the best. Let us know what happens.
                              Son Grant
                              dx 12/21/16 at age 17

                              BEP x3
                              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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
                              Grant is enjoying his senior year in High School Cancer Free!

                              Comment

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