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  • Had surgery, still confused

    I am 32. After surgery and biopsy, I still don’t know what is going on.
    8/27/21 Questionable testicular mass at PCP check
    8/31/21 Ultrasound: “Abnormal appearance of the right testis with a mixed cystic and solid echogenicity. Large cystic component measuring approximately 3.2 cm.” Referred to urology.
    9/16/21 Urology appt. Plan for right RO.
    9/18/21 Labs
    AFP <2 ng/mL
    Beta-hCG <1 IU/L
    LDH 186 U/L
    9/22/21 right RO surgery
    9/29/21
    In the morning, the (inexperienced) surgeon told us he felt strongly that it is cancer and talked about chemo, radiation, and surgery as possible future plans, but he predicted that surveillance would be sufficient. At that time, we didn’t have biopsy results yet. In the afternoon, he called with biopsy results. It was a brief call, of which I understood little, but I wrote these notes: “No cancer cells found. Germ cell tumor, non-seminoma, teratoma.” This does not make sense to me, and I will try to get the written pathology notes tomorrow.
    The surgeon was surprised by the “no cancer cells” result, and I will have a CT tomorrow (10/1) to look at the rest of my body.
    Can I celebrate now, or still be worried?


  • #2
    This is the pathology results. I had a CT which came back clean.
    Final Diagnosis
    Testes, right, radical orchiectomy:
    - POSTPUBERTAL TERATOMA.SEE COMMENT
    Electronically signed by MD on 9/29/2021 at 12:10 PM
    Comment
    Morphologic evidence of mixed germ cell tumor are not identified. AFP, beta hCG and LDH serum markers are within normal limits. No significant atypia is identified. Adjacent to the tumor are atrophic seminiferous tubules with peritubular fibrosis and morphologic features suggestive of germ cell neoplasia in situ however Oct-4 and PLAP is negative. The findings are not diagnostic of germ cell neoplasia in situ and may represent specimen spectrum of changes in the setting of atrophy

    Comment


    • #3
      This is a unique situation and the doctor says there isn’t any cancer. The doctor still wants me to see an oncologist. Has anyone experienced this or have any insights?

      Comment


      • #4
        I am not sure where you are being treated but it may be worth asking for a second pathology opinion from a high volume testicular cancer center like Indiana University or Memorial Sloan Kettering. Our friends at the TCRC keep a list of their contact information at: http://thetcrc.org/experts.html The pathology is a bit beyond my knowledge, but the comments seem like they may need to be further explored. Although, they could be nothing more than just atypical cells that have really an unknown meaning too but I would want someone experienced to take a look.

        While there can be a nuanced debate of if "teratoma is a cancer" the pathologist is noting teratoma and given how cells progress into teratoma, it should be treated as if it is a cancer so I am not sure why the doctor is saying it isn't a cancer.

        Perhaps the oncologist can shed some light. With negative markers and a clean CT things are pointing in the right direction but I would certainly want some clarification of the pathology and the "no cancer" comments.

        Mike

        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

        Comment


        • #5
          Being treated at the Elliot Hospital in Manchester, NH. The testicle is gone now, so in that sense it has been treated the same way a cancer would be treated. My understanding is that the goal of the oncology appointment is to (1) just get more eyes on this and (2) decide whether and how frequently I should get more scans.

          Thank you for the suggestion of getting a second opinion on the pathology. I will raise that idea to both the surgeon (in a week) and with the oncologist (not scheduled yet). Do you know what the process is for requesting a second opinion remotely?

          Comment


          • #6
            I would just contact the main number for Indiana University or perhaps Dr. Feldman's office at Memorial Sloan Kettering and ask them what needs to be done for a pathology second opinion. I would see too, perhaps your institution has or is in the process of getting a secondary review already.

            Mike
            Oct. 2005 felt lump but waited over 7 months.
            06.15.06 "You have Cancer"
            06.26.06 Left I/O
            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
            06.30.06 It's Official - Stage I Seminoma
            Surveillance...
            Founded the Testicular Cancer Society
            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

            Comment


            • #7
              I agree that a 2nd opinion would be a good idea, like Mike said things are looking good at the moment, but always good to know what was actually found & from the wording I can't tell (obviously, I am not a doc)
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Yesterday the urologist said I have TC. Staging is pT1b. The urologist showed me a chart on his computer about possible paths for cancer treatment. The recommended treatment is surveillance but chemo and RPLND was also mentioned. I’m seeing an oncologist in two weeks.

                Comment


                • #9
                  This is how I understand it. Less is more with TC these days. The cures are so good, that risk of surveillance is very low, so avoiding chemo or surgery is likely best option unless it is absolutely needed to effect a cure.
                  Jan, 1975: Right I/O, followed by RPLND
                  Dec, 2009: Left I/O, followed by 3xBEP

                  Comment


                  • #10
                    Did the urologist give you any more details on the pathology?

                    Mike
                    Oct. 2005 felt lump but waited over 7 months.
                    06.15.06 "You have Cancer"
                    06.26.06 Left I/O
                    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                    06.30.06 It's Official - Stage I Seminoma
                    Surveillance...
                    Founded the Testicular Cancer Society
                    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                    Comment


                    • #11
                      It is cancer, non-seminoma, teratoma, stage pT1b. I have an appointment with an oncologist in Manchester, NH in a couple weeks and I’m waiting for a callback from Dana-Farber.

                      Comment

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