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Second Battle with TC- Chemo, Radiation, or Surgery??? What are realistic options??

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  • Second Battle with TC- Chemo, Radiation, or Surgery??? What are realistic options??

    Husband had testicular cancer (Seminoma) in 2004- orchiectomy, and it had spread to lymph and lungs. He had chemo (4 BEP i think) and was cured. This is in large part to a trip to Indiana University for their guidance.

    December 2016 he had another orchiectomy for a second round with TC. Surveillance recommended. July 2018 a routine CT detected a mass (1.6 cm) in lymph node, and we waited 6 weeks for another scan per Dr. Today, he has 2.2 cm mass in lymph node and has been told he has stage IIB N2 TC.
    Local Alabama Drs said Chemo is preferred treatment but radiation is an option. We have called Indiana to get appointment with Einhorn. Have been told we can get in to see him in two weeks (what a LONG WAIT). Based on this forum, I have gathered that my husband may not be good candidate for more chemo based on having it in the past and possibly reaching some toxicity limit. That makes sense. Since it’s a seminoma, is radiation a good option?
    And then the surgery? RPLND? I read a lot about Dr Foster who seems to be retired. I have tried to call Indiana University multiple times but can only get the operator. We do have an appointment (Einhorn and Carey) but it's hard not having ANY idea what they may suggest.
    Appreciate any feedback. Surgery option seems absolutely awful in my opinion but I don’t know have a ton of info.



    THANKS!!!

  • #2
    So sorry. I would email Dr. Einhorn with history NOW leinhorn@iu.edu include you traveled there back in 2004. So this time with it being Seminoma too than RPNLD is probably not an option. Email as I have suggested.
    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.

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    • #3
      Its considered 2 separate cancer incidents if its 1 testicle and then you get it in another. I know some guys on here are 2x tc. But its my understanding it is not chemo resistive. As for the toxicity i would worry about that later, Im no expert.
      As for RT yes that is a viable option but you also run the risk of complications later on down the road. All i am getting at is if chemo is on option then i would weigh that along side RT. Try not to look tc 1 and tc 2 together but look at them as seperate things. Yes send every you have to Dr E. He is the expert.
      RPLND is always an option if you fit with in the parameters. I had RPLND after 3xBEP. Granted i relapsed again after that. But its still an option if your doctors think so. I honeslty would have his care at a TC center of excellence or at the very least have who ever is treating be in constant contact with 1.
      Last edited by eodtech2001; 09-05-18, 04:11 PM.
      Jan 2012- U/S mass in Left testicle
      Feb 2012- I/O performed to remove cancer
      Mar 1,2012- pathology pure seminoma
      Mar 7, 2012 PET SCAN stage IIa
      April 2012 Mayo clinic carbolite.
      May 2012 carbolite failed, started BEP x3
      August 7th 2012- BEP complete
      April 2013 CT/PET show relapse
      May 2013 RPLND
      Aug 2013 Relapse again Started VIeP x2
      Oct 2013 HDC AUTOLOGOUS
      Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
      Feb 2014 confirmed false positive all clear FINALLY !
      Jan 2015 1 year cancer free Pet/CT scan
      Jan 2016 2 years cancer free "Pet/CT scan
      Jan 2017 3 years cancer free "Pet/CT scan
      Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

      Comment


      • #4
        I have a contact number for you. Jackie Dr E assistant. 1 317-944-7929. I was given it several years ago so im not sure if its still a good contact. 1 317-948-0148 thst is the other number i have 1 of them may be a fax. Hopefully you can speak directly with Jackie if those are still her numbers
        Jan 2012- U/S mass in Left testicle
        Feb 2012- I/O performed to remove cancer
        Mar 1,2012- pathology pure seminoma
        Mar 7, 2012 PET SCAN stage IIa
        April 2012 Mayo clinic carbolite.
        May 2012 carbolite failed, started BEP x3
        August 7th 2012- BEP complete
        April 2013 CT/PET show relapse
        May 2013 RPLND
        Aug 2013 Relapse again Started VIeP x2
        Oct 2013 HDC AUTOLOGOUS
        Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
        Feb 2014 confirmed false positive all clear FINALLY !
        Jan 2015 1 year cancer free Pet/CT scan
        Jan 2016 2 years cancer free "Pet/CT scan
        Jan 2017 3 years cancer free "Pet/CT scan
        Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

        Comment


        • #5
          Many thanks to all. Ok I will consider them TWO different cancers. We have appointment with Einhorn and Surgeon at IU on 9/18. I will try the numbers listed. Thank you so much! As everyone knows, this is so hard because it's rare and few have had it and our local doctors just don't know much more than what they get from cancer centers.

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          • #6
            Best of luck! Please post updates on your journey. Seeing experts such as Dr. E. is exactly what I would do if I got TC again or had a late relapse since I already have had chemo as well. It will be interesting to see what they recommend. Yes it will be a new primary, and not chemo resistant. But having 3 more rounds of BEP may not be good for his long term health. I think I have read that they are trialing RPLND for single retroperitoneal node seminomas - that would seem to have some promise if you want to avoid further chemo - I'm curious if Einhorn will recommend that route or stick to chemo. RPLND isn't anything to be too afraid of, especially at IU where they have surgeons who are very capable.
            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 - 9/18/15: 4xEP
            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!
            9/27/2018 all clears up to this date!

            Comment


            • #7
              https://clinicaltrials.gov/ct2/show/NCT02537548

              edit: after reading more you can't participate in the trial since it is a second primary and you have already had chemotherapy. This throws off the results of the trial. However, it still stands that RPLND is potentially effective in stage 2a and 2b seminoma given what they know currently. And in some cases another study is doing 2b and 2c patients with primary RPLND and then 1xBEP to measure its success. It will be very interesting to see what Einhorn recommends.
              Last edited by biwi; 09-05-18, 10:56 PM.
              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 - 9/18/15: 4xEP
              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!
              9/27/2018 all clears up to this date!

              Comment


              • #8
                The number provided did get me to Einhorn's RN. THANK YOU!!!! I did see that my husband is not eligible for the clinical trial but very much get sense that IU is leaning toward recommending the surgery vs. chemo (or maybe even surgery plus lite chemo)
                . I am waiting on call back from IU RN. I will keep you posted. MANY THANKS TO ALL!

                Comment


                • #9
                  thanks so much for the number for IU- it worked. I am waiting on a call back. I do get the sense that IU is leaning toward surgery (or surgery + lite chemo) but could be just speculation or fear!

                  Stay tuned

                  Comment


                  • #10
                    I'd choose surgery over chemo at any given day, but that is just me. As long as I am getting expert surgery though... It is hard to become a surgeon at Indiana doing RPLNDs in general. So, I'd think all doctors are just as good. Foster was something else and I was lucky to have worked with him. But, he was also a product of a different generation. I think you'd be in excellent hands at IU when it comes to surgery. Also, this would be treated as a new cancer as far as I know... I know it sucks and I am sorry your family has to go through this one more time. That said, you have excellent odds. Was the regular follow up not be able to detect this earlier because it is seminoma not secreting AFP, bHCG, etc?
                    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 -

                    Comment


                    • #11
                      I am not sure if IU will do RPLNDs for seminoma outside of the clinical trial but Dr. Cary is an incredible surgeon and impeccable guy as well. For 2b, I would guess that they would lean towards chemotherapy over radiation therapy, but with the prior BEP who knows. I can't imagine that they would go with BEP again due to the cumulative doses of bleomycin but rather move to VIP or perhaps EPx4. Interested to hear what they have to 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 mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                      Comment


                      • #12
                        I got a call back from Jay, current nurse for Einhorn, and he said Einhorn does NOT think surgery will be necessary but we have aconsult with Carey (surgeon) anyway and then meet Einhorn. Will kepep you posted. THANKS!

                        Comment


                        • #13
                          UPDATE- saw Einhorn and Carey at IU and they recommend RPLD. It was a bit of a shock since husband has seminoma but it seems they are now focusing on short term vs long term risks and outcomes seem to be better with RPLD vs radiation and chemo......don't have a date yet but it will be soon. Carey seemed great!

                          Comment


                          • #14
                            Thank you for posting the update! Sounds like you guys have a plan of attack, best of luck! Take an extra day or two beforehand and visit Indy, that's what we did before my RPLND.
                            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 - 9/18/15: 4xEP
                            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!
                            9/27/2018 all clears up to this date!

                            Comment


                            • #15
                              Hope it all goes well for you, cobbyw!! Take care, hopefully it will be easier with the side and after effects
                              July 2016 - Left I/O
                              December 2016 - BEPx3
                              All clear for 1 year!

                              My Testicular Cancer Support Kit
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