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Just diagnosed with Seminoma

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  • #16
    Originally posted by ralphsong View Post

    Thank you Mike for the information. It seems that surveillance for stage I seminoma is the preferred option based on the study. BTW, the relapse rate was relatively low compared to what I thought 15%-20%. Is 15-20% relapse rate for overall seminoma rathe than Stage I?
    Sorry for the delay. 15-20% has historically been quoted but the attached study is real life data so perhaps the 15-20% is a bit high or these patients did better for some preason. Hard to tell.

    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 [email protected] if you would like to chat privately so as to avoid any delays.

    Comment


    • #17
      Originally posted by Pinstryped View Post
      Oncologist wants to biopsy the mass found next to my spine. She also ordered more blood tests just to make sure nothing has changed.

      Just waiting on the call for the biopsy referral 😫
      Any news on the biopsy? It would be a bit rare of a location for metastasis, especially given that the abdomen and lungs are negative.

      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 [email protected] if you would like to chat privately so as to avoid any delays.

      Comment


      • #18
        Not yet - I’m scheduled for a consult with the Interventional Radiologist tomorrow morning. I also thought it was weird that my abdomen and lungs were clear but if it isn’t part of the TC the doctor did say it could have just been something else that we didn’t know about until now. Hopefully it’s just benign. It hasn’t given me any pain or discomfort in that area so I’m crossing my fingers it’s nothing.

        still not looking forward to this biopsy. I hate needles in my back lol.

        Comment


        • #19
          Originally posted by Pinstryped View Post
          Not yet - I’m scheduled for a consult with the Interventional Radiologist tomorrow morning. I also thought it was weird that my abdomen and lungs were clear but if it isn’t part of the TC the doctor did say it could have just been something else that we didn’t know about until now. Hopefully it’s just benign. It hasn’t given me any pain or discomfort in that area so I’m crossing my fingers it’s nothing.

          still not looking forward to this biopsy. I hate needles in my back lol.
          Yeah, it is an unusual presentation and I am sure they are weighing biopsy vs wait and see approach and would rather see if they can get a bit more information withe the biopsy. Keep us posted and all the best on the procedure.

          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 [email protected] if you would like to chat privately so as to avoid any delays.

          Comment


          • #20
            Yeah I’d definitely rather know what it is instead of waiting to see what happens. Biopsy is scheduled for March 9th.

            in the meantime I’m getting a bunch of dental work done that I’ve been putting off. Might as well get that out of the way now. 😅

            Comment


            • #21
              Definitely keep us posted on the biopsy. All the best to you until then.

              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 [email protected] if you would like to chat privately so as to avoid any delays.

              Comment


              • #22
                Had the biopsy this past Thursday. It all went really fast.

                They prepped me like I was having surgery. Ran me through a CT scan to pinpoint the tumor, then used a 17 gauge needle to take the sample.

                I was given a sedative and lidocaine near the biopsy point but they gave it right before the needle went in and let me tell you I felt EVERYTHING. The worst part was when they finally got to the tumor - I actually let out a scream because it hurt so bad.

                It was over in just under four minutes but felt like hours lol. I should have the results back this week sometime and I have a follow up with the oncologist to go over everything on Friday.

                Comment


                • #23
                  Hope everything will be fine.
                  03.01.2021 Diagnosed with TC, 2cm*1.5cm
                  03.16.2021 Left I/O
                  03.26.2021 Pathology report: Stage I Seminoma
                  Surveillance...​

                  Comment


                  • #24
                    Well, biopsy results came in today and the mass is malignant. I see the oncologist on Friday to go over the results.

                    Final Diagnosis
                    A. Back, Upper, RT SIDE PARASPINAL MASS FNB:
                    Satisfactory for evaluation.
                    MALIGNANT
                    Necrotic tumor, see comment.

                    Comment
                    Cytology slides show necrotic tumor and adjacent inflamed fibrous tissue. No viable tumor is available for further work-up. Correlate clinically and with imaging studies. If clinically indicated, may consider additional sampling.

                    Cell Block Comment
                    Immunohistochemistry:
                    AE1/AE3 and CAM5.2 immunostains were attempted and appear negative; however, no viable tumor is seen.

                    A formalin-fixed paraffin embedded cell block was prepared and the slides were evaluated concurrently with other case materials for the determination of the final interpretation and report​

                    Comment


                    • #25
                      Just got out of the oncologist office. Since the samples they got from the biopsy were necrotic, they don’t know what kind of cancer it is so they can’t give a treatment plan for it. Sounds like we’re going to move forward with removing the whole tumor to study it that way. More waiting. 🙃

                      Comment


                      • #26
                        That stinks but not unusual that the biopsies are indeterminant. Is there a reason to believe it is not seminoma? Have they reached out to any testicular cancer experts to get their thoughts?

                        I guess the other question is could it be a burned out tumor and thus just be able to watch it for any growth?

                        Mike
                        Last edited by Mike; 03-17-23, 01:50 PM.
                        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 [email protected] if you would like to chat privately so as to avoid any delays.

                        Comment


                        • #27
                          As far as I know they haven’t consulted any TC experts. I might email Dr. Einhorn to see if I can get his thoughts on it.

                          The oncologist I have seems a bit flighty to be honest. But she said she wants to confirm it is seminoma and not some other form of cancer before we just start throwing anything at it. I have an MRI scheduled on the 28th to get a better picture of it, and then see a surgeon to either have a bigger section of the tumor removed or just have the whole thing removed.

                          Comment


                          • #28
                            It can't hurt to send your CT reports to Dr. Einhorn, noting the negative markers and just see what he may say.

                            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 [email protected] if you would like to chat privately so as to avoid any delays.

                            Comment


                            • #29
                              I emailed Dr. Einhorn tonight and he replied! This was his response which has actually helped me be at ease with everything.


                              Hard to tell by just E mail, even your very thorough communication. A right sided testis tumor usually spreads between the aorta and the inferior vena. A left sided tumor is usually to the left of the aorta. Difficult to know what that means when it states “ right paraspinal location”. However , the spread from seminoma can be unusual.
                              Seminoma usually has normal tumor markers ( hCG and AFP), so that being normal does not help.​

                              Comment


                              • #30
                                Glad that you reached out to Dr. Einhorn and I think he is basically saying that it is unknown and futrher investigation warranted vs. just starting treatments. Is that how you took it?

                                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 [email protected] if you would like to chat privately so as to avoid any delays.

                                Comment

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