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Please help! We are desperate!!

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  • Please help! We are desperate!!

    My husband relapsed with immature teratoma after 4 xBEP. His surgeon in Europe suggests HDC and then surgery (if it is possible) and dr E suggests only surgery - chemo will not help. I will really appreciate your suggestion. I feel desperate. I want to help him!

    His medical report:

    Disease Course:
    The disease manifested initially as a hemorrhagic left supraclavicular lymph node, following minor trauma (11/2015). Final diagnosis was delayed (02/2016) as the supraclavicular mass had been regarded as a post-traumatic hematoma. Due to its atypical clinical course and compression of the jugular vein, surgery was performed which revealed a hemorrhagic lesion with soft tissue components. Pathology report showed non-seminomatous germ cell tumor-embryonic carcinoma. At the time of diagnosis aFP was 1000, LDH: 800 and hCG was normal.
    During disease staging, ultrasound examination showed testicular microlithiasis and a tumor measuring approximately 2 cm, while abdominal computed tomography revealed an extensive left retroperitoneal (total dimensions: 15x8cm) necrotic lymph node mass abutting the ipsilateral psoas muscle and extending to the renal hilum, as well as a right retrocrural (total dimensions: 8x6cm) necrotic lymph node metastatic mass.
    Orchectomy was performed (03/2016) and pathology showed non-seminomatous germ cell tumor-embryonic carcinoma.
    Between 03/2016 and 06/2016 the patient underwent 4 cycles of BEP regime without serious complications. At the end of chemotherapy, follow-up computed tomography showed complete resolution of the left supraclavicular mass, mild size decrease of the left retroperitoneal mass and no differentiation of the right retrocrural mass.
    Due to remaining retroperitoneal masses post-chemotherapy, a retroperitoneal lymph node dissection was decided which was performed on 08/2017, in an experienced center of reference. Almost total resection (with a remaining 0.9cm component in contact with the renal vein) of the left reptroperitoneal mass with nerve sparing technique was achieved. At the same time, intra-surgical biopsies of the right retrocrural mass were obtained. Pathology report of the resected left retroperitoneal mass as well as the biopsies of the right mass, showed only necrosis/fibrosis. Thus no further treatment was suggested and 4-month follow-up computed tomography was recommended.
    During follow-up, there was gradual increase in size of the right retrocrural mass, without aFP and LDH increase. A PET-CT scan was suggested which showed mildly increased uptake.
    Due to gradual increase in size, resection of the right retrocrural mass was decided which was performed on 09/2017 at the same medical center. The retrocrural mass was completely resected and post-surgical pleural effusions represented the main complication which was resolved following tube placement. Pathology report of the resected mass revealed only necrosis/fibrosis, without teratoma or tumor cells. Thus no further treatment was suggested and 4-month follow-up with computed tomography was recommended.
    On 11/2017, about 1 months following the resection of the retrocrural mass, the patient complained of mild abdominal pain, nausea and vomiting. Blood investigations at that time showed liver dysfunction with elevated SGOT, SGPT and GGT. The rest of blood analysis, including tumor markers, was unremarkable. An ultrasound examination of the abdomen showed an extensive intrahepatic/perihepatic mass. Computed tomography was ordered (CT 05-11-2017) which revealed a large intrahepatic mass (approximately 13cm on maximum diameter) with necrotic and soft tissue components, containing thick septa, as well as a right retrocrural/posterior mediastinal mass of the same constitution (approximately 7x13cm). An ultrasound-guided biopsy of the masses was ordered. Pathology of the tissue sample of the retrocrural mass showed immature teratoma.

  • #2
    Oh no! so sorry, trying to make sense of the information, I'm not a medical professional. I would go with what Dr. Einhorn says personally. So your husband had RPLND in Europe?
    Again, so sorry for this is a nightmare come true! Hoping someone can help. I do know that immature teratoma can transform into other types of cancer, and several on this site in the past have had chemo, but only when the transformation was present already in pathology
    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.


    • #3
      From what I have read immature teratoma relapse is rare. Much more without presence in the primary tumor.I wish I could follow dr Einhorn's advice but this means that I can't help my husband because we haven't found a surgeon yet. His surgeon supports that HDC may help. Please anyone who knows an expert Doctor /surgeon who I can contact to inform me.
      The situation is really urgent


      • #4
        Yes Tregka my husband has 2 surgeries in a referral center in tc in German


        • #5
          I am very sorry to hear your update. Since you are based in Europe and if I am not mistaken you had your previous surgery in Germany, you cancontact dr. Peter Albers in Dusseldorf (his name was mentioned to me by dr. Einhorn) or, otherwise, I can recommend dr. Nicola Nicolai in Milan (he is the mostexperienced Italian TC surgery). They are both authors of the TC European guidelines. In case, I can provide you the contacts details.


          • #6
            Singa thanks a lot. I have already sent e mail to both doctors. Dr Nicolai suggest chemo and professor Albers hasn't answered yet. Please I have to find a doctor who can perform a surgery asap!!! I have to help him!


            • #7
              Hi Vaan,

              I'm very sorry to hear this post and the update. In my exposure to this community, teratoma is only primarily treated by surgical means. Chemotherapy, especially HDC is not to be taken lightly.

              Perhaps some of the EAU Testicular Cancer Guidelines may be helpful to review. Dr. Albers is a primary author.

              Following first-line BEP chemotherapy, only 6-10% of residual masses contain viable cancer, 50% contain mature teratoma, and 40% contain necrotic-fibrotic tissue [169]. FDG-PET is not indicated to re-stage patients after chemotherapy [42]. In cases of complete remission after first line chemotherapy (no visible tumour), tumour resection is not indicated [170, 171]. Residual tumour resection is mandatory in all patients with a residual mass > 1 cm in the short axis at cross-sectional CT imaging [172-175]. The role of surgery is debated in patients with retroperitoneal residual lesions < 1 cm. There is still a risk of residual cancer or teratoma although the vast majority of patients (> 70%) harbour fibro-necrotic tissue [176]. TESTICULAR CANCER - LIMITED UPDATE MARCH 2015 25 Proponents of PC-RPLND for all patients refer to the fact that both teratoma and vital malignant germ cell tumours are still found after radiologic complete remission in lesions < 10 mm [177]. The alternative is to put patients with residual disease < 1 cm on an observation protocol based on recurrence data of 6-9% depending on the time of follow-up [170, 171]. In the series with a longer observation of 15.5 years, 12 of 141 patients (9%) relapsed after having achieved a complete response after primary treatment [171], but eight of the 12 relapsing patients were cured. Therefore, patients treated with first line chemotherapy should be informed about this life-long risk of recurrence in the order of 10% before consenting to observe residual lesions < 1 cm. Patients after salvage chemotherapy or high-dose chemotherapy in first or subsequent salvage situations harbour vital tumour at a much higher rate [178]. Therefore, there is an indication to perform surgery in salvage patients even with residual disease < 1 cm [170, 171]. If residual surgery is indicated, all areas of primary metastatic sites must be completely resected within 2-6 weeks of completion of chemotherapy. If technically feasible, a bilateral nerve-sparing procedure should be performed. There is growing evidence that template resections with unilateral preservation of nerves in selected patients yield equivalent long-term results compared to bilateral systematic resections in all patients. The mere resection of the residual tumour (so called lumpectomy) should not be performed [171, 176, 179-182]. In persistent larger volume retroperitoneal disease, all areas of primary metastatic sites must be completely resected within 2-6 weeks of completion of chemotherapy. If technically feasible, a nerve-sparing procedure should be performed [171, 176, 179]. Laparoscopic RPLND may yield similar outcomes to the open procedure in very selected cases of very low residual disease and in very experienced hands, but it is not recommended outside a specialised laparoscopic centre [183-185].
              Age 31 - Portland, OR
              01NOV16- Pain in right testicle, palpable mass
              13NOV16- R I/O. Markers normal
              27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
              06DEC16 - CT scan clear
              09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
              03JAN17- Ended 1xBEP; start surveillance
              18MAR17-2nd pathology report shows 90% EC , 10% seminoma


              • #8
                As I understand there is s different approach regarding chemo and immature teratoma between USA and Europe. The problem is that this makes things more complicated


                • #9
                  I'd go with surgery as well. It is a little suspicious that teratoma could grow that much in less than 2 months. Don't lose hope. Liver could grow back to almost normal in a few months, if they need to take some out. This surgery would be, however, a very difficult surgery, perhaps that's why your doctors are leaning towards HDC. I'd also try to set up an appointment with the best liver transplant surgeon in your area to get a second opinion. This may require two or three surgeons at once depending on where the tumor is ..and they need to take it out with fairly large margins. I'd also ask your doctor about some papers or their own experience with HDC on immature teratoma. They may know something that we do not.
                  Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                  Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                  4*BEP AFP 20 end of 4*BEP
                  May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                  Surveillance (blood & X rays) and all clear for 24 months
                  April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                  4xTIP - almost normal AFP, but started rising again
                  2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                  Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                  2 Lung Wedge Resections -


                  • #10
                    Thanks s lot Tarc.
                    I am going to ask for the papers. As I said before, there are huge differences between Europe and USA, regarding immature teratoma approach.
                    Until know, his surgeon (one from the list of expert tc urologists) answer is that chemo can be effective in immature teratoma.
                    The team of their visceral surgeons, Thoracic surgeons and oncologists recommend to receive one cycle of Taxol and ifosfamide for stem cell mobilisation followed by 3 cycles of high dose chemotherapy. Then surgery will be scheduled.
                    Now I am trying to talk with other expert tc surgeons worldwide in order to see if somebody believes that he can do a surgery asap.
                    Has anybody know about CDK4/6 inhibitors???


                    • #11
                      Hi Vaan, I cannot offer any 'clinical' advise on your case. My only suggestion would be, since most doctors in Europe seems to advice chemo while Einhorn suggested immediate surgery, to perhaps inform dr. Einhorn that at this point it seems difficult to find a surgeon in Europe who would perform the intervention since they all suggested (HDC) chemotherapy. Perhaps he can explain you the rational of his recommendation and he might be able offer his advice for a surgeon in EU as I have mentioned in my previous message he recommended to me prof.Albers and perhaps they can together discuss your case. On the other hand, it would also be important to understand while all the TC experts that you have contacted seem to believe that HDC can be effective and should come first.


                      • #12
                        I really thank all of you for your support!
                        I will try to ask for some paper from our surgeon regarding the sensitivity of immature teratoma to chemo. Unfortunately prof Albers hasn't respond to my mail yet. But from what I have anderstand the approache between USA and Europe is completely different. The truth is that I can't find same cases (relapse with immature teratoma) in the Internet.
                        In the same time I am waiting for expert surgeons from IU and MSKCC to review the images and tell me their approach.
                        All this story is really strange and stressful for both of us. The chances for relapse for his case, with completely negative biopsies from PC RPLND and retrocrural resection, was 2%!! And in only 1,5 month something happens and you have to face all this again!
                        Thanks again for your support and your opinions.


                        • #13
                          ​Am very sorry to read this, Vaan.

                          Where are you located in Europe? If in southern Germany (Munich) I can recommend my son's doctor: Dr Gerl (​​ he has worked with Dr Einhorn and Dr Nichols in the past. Also, a friend with a higher stage of TC was at Rechts the Isar (Prof. Clemm). Dr Clemm treated this friend and also recommended 2 expert doctors, because he had an operation on his lungs and a brain surgery (I believe this was done in Heidelberg) both due to spread. He has been in the clear since 2 years. Both are TC experts and might even answer questions via phone or mail. BTW heard that Dr Peter Albers is also very knowledgeable - as stated above.

                          Mother of Son (Son's date of birth: August 1987. Age at diagnosis 27, now 28)

                          1 July 2015: Son discovered small knot in left testicle, no pain. Waited and observed.
                          10 July 2015: Appointment with urologist. ultrasound: 1.7 cm tumor, blood work: AFP - 1.62 (5.50), bHCG- <0.1 (<2.0), LDH159 U/l (135-225), 2.65 umol/s/l (2.25-3.75) .
                          14 July 2015: Hospital, same diagnosis.
                          15 July: 2015 l/O, Pathology: Stage 1A 100% Seminoma.
                          16 July 2015: CT - Clear
                          October 2015: Blood work - Normal range
                          January 2016: Bloodwork - Normal Range
                          Febuary 2016: CT - Clear

                          July 2016 - One year clear!!

                          Active Surveillance recommended by hospital Doctors, His Urologist .
                          Via email by Dr. Nichols and Dr. Einhorn


                          • #14
                            VAAN~ you have receivced some doctor's names to contact in Europe. Hopefully, one will contact Dr. E directly. The protocols are different in Europe vs. US, I can understand this makes choosing how to proceed, and finding a doctor to perform the surgery if you go that route more difficult.
                            Thinking of you and your husband.
                            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.


                            • #15
                              Something to keep in mind as well is that immature teratoma and mature teratoma are very different. Immature is aggressive and malignant, whereas mature teratoma is non-malignant and chemo-resistant. Immature terratoma is not discussed very much on these boards as it is pretty rare. Usually when teratoma is brought up it is mature teratoma.
                              6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                              6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                              7/7/15: bHCG 56, AFP 42, LDH 322
                              7/13/15: begin 4xEP, end 9/18/15
                              10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                              10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                              4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                              4/20/16: RPLND @ IU - teratoma only!
                              4/15/19: all clears up to this date!