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First year after chemo pet/ct not as expected,im freaking out

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  • #16
    From what Iíve seen on this board once a teratoma is removed it is very rare for it to come back. Typically when a mass is removed and itís 100% teratoma itís a good thing because usually thatís the end of treatment for most the guys here who had teratoma post chemo.
    3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

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    • #17
      Originally posted by dcalandrelli View Post
      From what I’ve seen on this board once a teratoma is removed it is very rare for it to come back. Typically when a mass is removed and it’s 100% teratoma it’s a good thing because usually that’s the end of treatment for most the guys here who had teratoma post chemo.
      I really appreciate your reply. Helped ease my mind a bit. Thank you

      Comment


      • #18
        OK, that is a really small growth then and I am not aware of any volume of growth doubling rates that play a role in the prognostic factors of what it may be.

        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

        Comment


        • #19
          My story is not exactly the same as your husband but I had a VATS after chemo because the lung nodule did not shrink. I think 5mm is way too small to biospy and probably you may want to have it surgically removed in order to have the piece of mind.

          If it is a teratoma, then your husband will be back on surveillance and be back to the new normal life.

          If they find active cancers, then your husband is very lucky to have it removed early.

          Good Luck
          6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
          7/2016 - markers normal; confirmed Stage 1B; surveillance
          8/2016 - markers normal
          9/2016 - markers normal
          10/2016 - markers normal; CT scan revealed 3mm lung nodule
          12/2016 - markers normal
          2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
          3/2017 - 3xBEP
          5/2017 - finished 3xBEP
          6/2017 - markers normal; no size reduction in lung nodule
          8/2017 - VATS and markers normal; continue to surveillance

          Comment


          • #20
            Originally posted by OneBallLeft View Post
            My story is not exactly the same as your husband but I had a VATS after chemo because the lung nodule did not shrink. I think 5mm is way too small to biospy and probably you may want to have it surgically removed in order to have the piece of mind.

            If it is a teratoma, then your husband will be back on surveillance and be back to the new normal life.

            If they find active cancers, then your husband is very lucky to have it removed early.

            Good Luck
            May I ask about the pathology of the nodule when it was removed? Was it teratoma?

            Comment


            • #21
              Yes it was 100 percent Teratoma.
              6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
              7/2016 - markers normal; confirmed Stage 1B; surveillance
              8/2016 - markers normal
              9/2016 - markers normal
              10/2016 - markers normal; CT scan revealed 3mm lung nodule
              12/2016 - markers normal
              2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
              3/2017 - 3xBEP
              5/2017 - finished 3xBEP
              6/2017 - markers normal; no size reduction in lung nodule
              8/2017 - VATS and markers normal; continue to surveillance

              Comment


              • #22
                Our doctor spoke to thoracic surgeons and they are leaning toward waiting 3 more months and then would decide.
                I dont know if I can wait this long. What if it is active? I don't think that waiting will be good choice.
                I think doctors here in England always lean toward less aggressive choices. When we found out about the tumor, they really convinced us to do surveillance instead of adjuvant chemo. Then 2 months later he relapsed. That's why I'm not pleased with their opinion.
                The doctor didn't tell us why they want to wait.This residual's place is in the left lower lube, is it in a hard position and applying surgery would be fetal?
                He won't tell us the reason until our appointment which is 2 weeks away.
                if anyone been in this position please share your story.

                Comment


                • #23
                  Originally posted by OneBallLeft View Post
                  Yes it was 100 percent Teratoma.
                  I appreciate your reply , l really hope this spot is not active and dead.
                  May this be your last surgery and many many more clear scans!

                  Comment


                  • #24
                    Originally posted by Wifeofwarior View Post
                    Our doctor spoke to thoracic surgeons and they are leaning toward waiting 3 more months and then would decide.
                    I dont know if I can wait this long. What if it is active? I don't think that waiting will be good choice.
                    I think doctors here in England always lean toward less aggressive choices. When we found out about the tumor, they really convinced us to do surveillance instead of adjuvant chemo. Then 2 months later he relapsed. That's why I'm not pleased with their opinion.
                    The doctor didn't tell us why they want to wait.This residual's place is in the left lower lube, is it in a hard position and applying surgery would be fetal?
                    He won't tell us the reason until our appointment which is 2 weeks away.
                    if anyone been in this position please share your story.
                    Well, I waited for 4 months before my oncologist decided on the next treatment (the nodule grew from .4mm to 1.4cm). Lung is a complex organ and in many cases, the nodule can stay stable or disappear. Your doc is taking a conservative approach and he is not wrong. I was in the same situation before and I know that the waiting game sucks.

                    Ask your doctor on the exact location of the nodule. Is it on the outer layer? If so, they can easily perform a VATS to remove. My nodule was located at the middle right lube and was on the outer layer. The surgery took less than 30 mins to perform and I was back to the gym in less than two weeks.

                    ​I hope this helps.
                    6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
                    7/2016 - markers normal; confirmed Stage 1B; surveillance
                    8/2016 - markers normal
                    9/2016 - markers normal
                    10/2016 - markers normal; CT scan revealed 3mm lung nodule
                    12/2016 - markers normal
                    2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
                    3/2017 - 3xBEP
                    5/2017 - finished 3xBEP
                    6/2017 - markers normal; no size reduction in lung nodule
                    8/2017 - VATS and markers normal; continue to surveillance

                    Comment


                    • #25
                      Originally posted by Wifeofwarior View Post
                      I appreciate your reply , l really hope this spot is not active and dead.
                      May this be your last surgery and many many more clear scans!
                      Thanks and I really appreciate it.

                      Stay positive. You need the positive energy to flight this thing with your hubby. I truly believe that "I am very fortunate in this very unfortunate situation as testicular cancer is highly treatable." My wife and I are the power team to kick this bad boy.
                      6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
                      7/2016 - markers normal; confirmed Stage 1B; surveillance
                      8/2016 - markers normal
                      9/2016 - markers normal
                      10/2016 - markers normal; CT scan revealed 3mm lung nodule
                      12/2016 - markers normal
                      2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
                      3/2017 - 3xBEP
                      5/2017 - finished 3xBEP
                      6/2017 - markers normal; no size reduction in lung nodule
                      8/2017 - VATS and markers normal; continue to surveillance

                      Comment


                      • #26
                        Originally posted by OneBallLeft View Post

                        Well, I waited for 4 months before my oncologist decided on the next treatment (the nodule grew from .4mm to 1.4cm). Lung is a complex organ and in many cases, the nodule can stay stable or disappear. Your doc is taking a conservative approach and he is not wrong. I was in the same situation before and I know that the waiting game sucks.

                        Ask your doctor on the exact location of the nodule. Is it on the outer layer? If so, they can easily perform a VATS to remove. My nodule was located at the middle right lube and was on the outer layer. The surgery took less than 30 mins to perform and I was back to the gym in less than two weeks.

                        ​I hope this helps.
                        It really did helped.
                        Did they only removed the nodule or had the lube resected?
                        I also noticed that you already had teratoma on your first pathology, maybe that is the reason the nodule pathology turned to be also teratoma? Or is it chemo that turned it into teratoma?
                        My husband's path. Is 90% EC and 10% yolk sac no teratoma , that's why I'm asking if chemo do turn it to teratoma .

                        Comment


                        • #27
                          Originally posted by OneBallLeft View Post

                          Thanks and I really appreciate it.

                          Stay positive. You need the positive energy to flight this thing with your hubby. I truly believe that "I am very fortunate in this very unfortunate situation as testicular cancer is highly treatable." My wife and I are the power team to kick this bad boy.
                          Your words teared me up. You guys and us wifes are fortunate! Thanks for reminding me to stay positive. I really need to turn off my thinking and digging mind and start to think about positive outcomes.
                          Thankyou!

                          Comment


                          • #28
                            Originally posted by Wifeofwarior View Post

                            I also noticed that you already had teratoma on your first pathology, maybe that is the reason the nodule pathology turned to be also teratoma? Or is it chemo that turned it into teratoma?
                            My husband's path. Is 90% EC and 10% yolk sac no teratoma , that's why I'm asking if chemo do turn it to teratoma .
                            It is my understanding that the absence of teratoma in the orchiectomy specimen does not rule out the possibility of teratoma being found in the retroperitoneum after primary RPLND or post-chemo RPLND. Having teratoma in the orchiectomy specimen does seem to increase the risks of teratoma in the retroperitoneum. I am not sure how this would relate to a lung only lesion and I have not read anything where the reason for this has been determined (for example, that the chemotherapy causes the tumors to change into teratoma).

                            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

                            Comment


                            • #29
                              Deep breath! I would look into consulting an expert on TC as mentioned already. Mike is correct in saying that teratoma can be found in patients who do not have it in primary pathlogy at least in the retroperitoneal area.
                              17 year old son Grant dx 12/21/16
                              pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                              pre/o CT Scan 12/22/16 normal
                              r/o 12/22/16
                              Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                              PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                              -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                              2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                              BEP x 3 1/27/17
                              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.

                              Comment


                              • #30
                                Originally posted by Mike View Post

                                It is my understanding that the absence of teratoma in the orchiectomy specimen does not rule out the possibility of teratoma being found in the retroperitoneum after primary RPLND or post-chemo RPLND. Having teratoma in the orchiectomy specimen does seem to increase the risks of teratoma in the retroperitoneum. I am not sure how this would relate to a lung only lesion and I have not read anything where the reason for this has been determined (for example, that the chemotherapy causes the tumors to change into teratoma).

                                Mike
                                I haven't find an article that talked about post chemo lung lesions only. I found one that experimented on only 34 patients ,which is really a small number. I'm staying positive and having good faith that this is nothing and Shall pass.

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