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Post chemo CT Scan Results - Intermediate risk

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  • Post chemo CT Scan Results - Intermediate risk

    Dear all,

    I am writing regarding my boyfriends first post chemo CT scan.

    To resume:

    He had intermediate risk ( 40% chorio, 40 EC 10 YS and 10% teratoma). First CT scan after I/O he had all clear. Then 3 weeks later he had elevated marks and 2 nodules max with 2 cm.

    So he started 4 x BEP ( tumor markers HCG =15000 and afp around 400) and we finished it 4 weeks ago with the tumor markers normalized.

    Now we got our first CT scan results with 2 lymph nodules 5,3 mm and a nodule in the lung size is not identified on the report(his lungs were clear before..)

    So now we dont know what to do and we are living in France. I would like his CT scan results to be checked in IU or somewhere more experienced than french doctors... I dont know what is theis new lung nodule, I dont know whether he needs RPLND or not..

    The procedures are quite long here and I am really afraid for not knowing ...Could you please help us ? What should we do? How can I send the CT scans to have Einhorn's idea?

    Thank you very much in advance and sorry for my bad english..




  • #2
    Hi TCfight,

    Sorry to welcome you here.

    I think you should first contact Dr. Einhorn, when he agreed, his assistance will contact you tell you the address and following issues I think. Dr. Einhorn’s email address is : leinhorn@iu.edu

    I have noticed that your boyfriend has finished his BEPx4. These two nodes could be harmless when one is 5mm and other one in lung even more small. But you really need to listen to an TC expert, because your BF has chorio and EC components, they are quite aggressive.

    I wish a good luck to you and your boyfriend.

    Amy, Ran’s mom
    Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

    Comment


    • #3
      Hi TCfight,

      As many likely will, I agree with Ryan Bi's post to contact Einhorn and get his thoughts.

      When i think of it, i don't believe Einhorn or any other doctor might want to see the images, the impressions from the radiologist should suffice. If they see nodules, then that's that.
      I've met a few people that still has some nodules in their body post chemo. It usually depends on the actual type of TC, which chorio and EC might be part of. Usually, those are almost expected and are followed up by an RPLND.

      You can go to this link: https://www2.tri-kobe.org/nccn/guide...testicular.pdf

      these are the guidelines for treating all TC types. If you go to page 15 (test-9) you'll see that in your case, the option could be surveillance or RPLND. I don't have all the details on your situation but hopefully this helps.

      Si vous avez besoin d'aide pour traduire le lien, envoyer moi un message, je parle francais et je peux vous aider!

      Comment


      • #4
        Thanks Amy and wjonw. I sent an email to Einhorn. I hope he will answer and I hope that there is nothing to worry. And wjonw, I used google translate to translate the report, thanks again

        Comment


        • #5
          This is the response from Dr Einhorn when I sent him an email about my son: "We usually do a followup CT scan during or immediately after the 3rd and final course of chemo. Since he had 15% teratoma in his orchiectomy specimen, if there would have been persistent nodes > 1 cm, he would then have had RPLND to remove suspected teratoma. I am sorry for your loss." This was back in 2010. I hope all turns out well for you.
          sigpic
          15 Dec 08 Son Vincent diagnosed with TC
          20 Dec 08 RT I/O, 85% EC,15% Teratoma
          3XBEP Feb to April 09
          18 Aug 09 ct scan,massive tumor in lymph nodes
          23 Sept 09 RPLND, 80% Immature Teratoma, 20% Mature Teratoma
          21 Dec 09 scan shows neck, abdomen and groin node enlargements
          21 Dec 09 Amended path report, Metastatic Primitive Neuroectodermal Tumor as well as Metastatic Teratoma
          29 Dec 09 starts 6X VAC/IE
          7 March pet scan shows new disease, chemo stopped
          Hospice 5/11/10
          Passed away 5/15/10

          Comment


          • #6
            I agree that expert opinions are the way to go. This could be teratoma, or necrotic tissue, but it is also possible that those nodes will shrink further, since he is only 4 weeks post chemo. Nodes in the lung are pretty common, & rarely point to TC, but it should be monitored for change. I'd question why it was called out without a size given, that is not the way things are normally done,as far as I know.
            Last edited by Davepet; 05-16-19, 09:13 PM.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              Hi tjbrady,

              I saw your posts since last year May when my son was diagnosed TC.

              I was sacred by your son’s pathology report, because my son also has teratoma.

              Is there any way can predicted teratoma is that aggressive or not? My son had RPLND 14th March 2019 at IU. Dr.Cary didn’t say what kind of teratoma he has, but from pathology report I read that 95% is visible teratoma, is that meaning mature teratoma?

              I am in big panic with his next CT scan.

              I don’t want to push you looking back, I am very very sorry to read your post edit message. My heart broke.

              Best regards

              Amy, Ran’s mom
              Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

              Comment


              • #8
                I had answer from Einhorn, he is really amazing. Answering each email, even though he is quite busy...

                "
                Looks like everything OK but you are right-hard to tell by just an E mail. I would like to help further but with the 10-20 E mails I get daily from patients, it is simply not possible to send me pre and post chemo images and records and slides to review as it is too time consuming. Sorry."

                And also we got a phone call from our oncolog stating that lung nodule is smaller than 4mm and since the lymph nodules are smaller than 1 cm, they want to start surveillance. In the mean time, is there any service that we can send our files with an email and have a second opinion in US? Amy, how was your process? After chemo, how big was your residuals? Thanks again for all the responses..

                Comment


                • #9
                  Hi TCfight,

                  I am happy to hear you got answering from Dr. Einhorn.

                  I am living in Germany, my son studied in the USA. After diagnosis we traveled to visit Dr. Einhorn. Since my son had done his R/O outside US, Dr.Einhorn suggested an oncologist near to my son’s university for surveillance. He said if we go back to Germany, he will help us to find an good oncologist too.

                  Unfortunately my son had relapse after four months surveillance, Dr.Einhorn contacted the oncologist processed BEPx3, after that he referred my son to an urologist Dr. Cary for RPLND.

                  So if your are the patient of him, he will in charge of taking care totally. That’s why I could post my son’s CT’s copy to him.

                  This my son’s experience. Just for you information. But he is TC patient’s angel, as you said he is amazing.

                  Good luck!

                  Amy, Ran’s mom
                  Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                  Comment


                  • #10
                    My boyfriend was also living in Germany for 7 years and then we just moved in France.. That's why if you know any good oncolog in Germany, could you please share his information with us? I dont know maybe I am a bit exagerating, our hospital in Paris and also in the TC experts list. I hope everything will be fine, that's the only thing I want.

                    Comment


                    • #11
                      TCfight,

                      Once I wrote an email to an TC expert in Germany, but she responded very late and suggested if possible, we should travel to US. I will try to find her name again, but the doctors in Germany reply emails are not not normal. My husband is a doctor too.

                      Best regards

                      Amy, Ran’s mom
                      Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                      Comment

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