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  • Need some input please...odd case...

    I'm so confused!! So I just signed up on this amazing forum. Two weeks ago I had a recurrence of my testicular cancer (Stage 1 Pure Seminoma) that was under surveillance the last two years. I've had clean CTs and MRI every 4 months and then out of nowhere 6 weeks ago my right inguinal(groin crease) lymph node swoll up a bit. A general surgeon biopsied it and found 3cm pure seminoma. This is not a normal spot for a 2nd occurrence (in fact barely documented ever according to my docs) the rest of my body is clear with CT/ PET and blood. SO what's the question? WHICH treatment radiation vs. chemo?????My oncologist in Los Angeles asked Einhorn what I should do......his answer....BEPx3. My radiation oncologist thinks its a coin toss, but he reached out to Dr. Bosl (Sloan-Kettering) who told him he would suggest the BEP as well. Both Bosl and Einhorn preferred Chemo over radiation mainly because less long term side effects and higher success rate. I was hoping for radiation as it is quite a bit less body wracking and apparent to public. I know Einhorn and Bosl are considered brilliant, but they seem usually to favor chemo(of which one of them, brilliantly and thankfully developed). I am just curious if there is anyone who knows/ thinks I should talk to anyone else. It's just so frustrating to have the most cureable type of cancer(I know I'm blessed for that) but feel like I have to go straight to nuclear bomb mode to get rid of it. I thought for sure I would just get some quick flashes of radiation as seminoma responds so well to it. Any help or thoughts are appreciated. Warmest wishes and prayers. Thank You.

  • #2
    Hey NY,

    Sorry you have to go through this again.

    Very simply put, if both Bosl and Dr. E say BEP... I would do BEP. If in doubt, fly down either to Indiana or MSKCC and have the talk directly with either of the gentlemen. They are thinking that it is not in the traditional landing zone, so the traditional approach (radiation) would not apply. They want to make sure that is it is anywhere else, they catch it and that would be 3xBEP or 4xEP.

    Any chance it is an EGCT primary as opposed to a recurrance?
    Best,

    Zsolt


    Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

    “Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis


    Mass found 11/20/08
    Left I/O 11/25/08
    Pathology: Seminoma, Stage 1
    Surveillance: All Clear since

    Comment


    • #3
      Thanks so much for the quick reply. That's the lame thing about it, if it was pure seminoma in the retro nodes it would be relatively easy to say Radiation, but for it to pop up in the inguinal node was more than likely caused by the orchipexy and almost never seen. I feel like I'm skipping the Navy SEALS to get at a terrorist and being forced to nuke the whole country. I'm sorry, what do you mean by ECGT?

      Comment


      • #4
        the two experts say BEP, i'd go with BEP. it sucks, but you're playing with a loaded gun if you decide to go the other way. i had metastisis in the inguinal nodes post RPLND and it got there via other cancerous spots, so although it may not show up on the CT, your cancer may be elsewhere in your body. I'd go with what einhorn says, cause it sounds like they think that it has microscopically spread elsewhere and want to kill it all at once. It's better to get it all over with now than fight a battle of attrition killing cancerous spots when they pop up.
        Kick testicular cancer in the balls
        9/2010 Pure Embryonal Carcinoma
        10/2010 right orchiectomy
        6/2011 HCG up to 300 6/27/2011 3XBEP
        7/2011 HCG up to 1500
        8/2011 HCG down to 6
        8/25/2011 mass in abdomen
        9/23/2011 RPLND
        11/2011 HCG up to 37 masses in lungs and lymphnodes 11/2011 1X TIP
        12/2011 HCG up to 400
        12/2011-1/2012 2x HDC carbo/etopiside with Dr. Einhorn 3/2012-5/29/2012 50mg oral etopiside
        1/2012-present HCG >0.5

        Comment


        • #5
          Your surveillance protocol worked, & found your tumor early. The gamble one takes when going on surveillance is that if the tumor returns you need to hit it hard with the big guns ASAP.

          Don't second guess this, you gave it your best shot to try to avoid unneeded treatment at the time, but now you've got to give the TC the final death blow. It really is the best course of action at this point. Remember, it is the 3xBEP protocol that makes TC the most curable cancer, & that is what you need now.

          You will get through it, it's not fun, but you will come out in just 9 weeks & most likely go on to lead a normal life. When I had my first TC 37 years ago, guys with spreading TC didn't have that option....

          Dave
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #6
            Originally posted by Ny01 View Post
            I'm sorry, what do you mean by ECGT?
            Extragonadal germ cell tumor. Basically TC that appears outside of the testicle without affecting the testicle. This would be a NEW cancer that was not caused by the original spreading. The point may, however, be moot as obviously if it is a recurrance it did not follow the traditional path and therefor the docs feel they need to take out the heavier artillery.
            Best,

            Zsolt


            Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

            “Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis


            Mass found 11/20/08
            Left I/O 11/25/08
            Pathology: Seminoma, Stage 1
            Surveillance: All Clear since

            Comment


            • #7
              Agree with all opinions expressed here by the wise gentlemen above. What the good Doctors are probably thinking is that, since it didn't follow the normal path of spread, all bets are off and you need systemic therapy. If it didn't show up in the para-aortic, etc. nodes first, then why would they think that standard radiation to those areas would be sufficient to contain it? The whole premise behind radiation is that you have to know where to aim it; if you miss by a little bit it is useless.

              Radiation isn't exactly a walk in the park anyhow. It can have some pretty nasty effects, both short and long term.

              Comment


              • #8
                Thanks so much...one more question?

                Thanks so much for your replies. I didn't sleep at all last night. I postponed my chemo one week as I have so much to get in order here at work and pass on to others. The doc said it wasn't much of a risk postponing one week. Any opinions on that? I hope I haven't made a mistake doing that. All my scans were completely clear. Pretty damn nervous............

                Comment


                • #9
                  My suggestion is just to get it done ASAP. Testicular cancer is a very rapid spreading type cancer. Certain types can double within 10-30 days. I don't want to worry you, just giving some statistics. Best of luck. You'll knock this dead.
                  sigpic

                  Justin; http://www.facebook.com/justinkatuls
                  Stage IIIB with mets to lungs; 100%EC; BEPx4

                  http://youtu.be/hlsIwmtb0U8 Divine Romance, Phil Wickham

                  Comment


                  • #10
                    Originally posted by Ny01 View Post
                    Thanks so much for your replies. I didn't sleep at all last night. I postponed my chemo one week as I have so much to get in order here at work and pass on to others. The doc said it wasn't much of a risk postponing one week. Any opinions on that? I hope I haven't made a mistake doing that. All my scans were completely clear. Pretty damn nervous............
                    Sooner is always better with cancer, but one week probably won't affect the cure, I wouldn't wait any longer.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      NY01 where in LA are getting treatment, my husband will probably be referred to a center of excellence there, UCLA, USC, or City of Hope.
                      3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

                      Comment


                      • #12
                        Hi Mikes Wife,

                        I've been following the ordeal you are going through with your husband right now and can't begin to imagine how stressful this must be. I hope you have been able to resolve matters with your Father-in-law, although this must be terribly difficult for him as well. My heart goes out to you all.

                        I understand time is of the essence for you right now, so I just wanted to let you know that although I am not sure where NY01 is receiving treatment, his girlfriend also posts on this forum under the moniker " River Blue". I have been corresponding with her quite a bit and recently left her posting ( something like "my boyfriend is going through chemo"...sorry,not sure of the exact wording). She just mentioned her BF (NY01) is not feeling too well right now from his Bleo push earlier today. So, if you are in need of that information quickly, I thought I would suggest trying her, as you might get a quicker response.

                        Hope this helps. Really wishing you the best,
                        Diane
                        Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin

                        12/07/11 I/O AFP: 291 hCG: 151
                        12/08/11 CT Scan, Xrays - clear
                        12/15/11 Non Seminoma Stage1-B
                        EC, Teratoma, Yolk Sac, Intratubular
                        4/21/12 Relapse- Start 3XBEP
                        6/25/12 Finished BEP
                        7/02/12 Markers and CT Scan normal
                        10/3/12 3 month post-chemo check-up - All Clear!
                        2/28/13 8 month post-chemo check-up - All Clear!
                        6/30/13 ONE YEAR- ALL CLEAR!!
                        2/14/14 20 month post-chemo check-up - All Clear!

                        Comment


                        • #13
                          Mikes wife

                          Hi Mikes Wife,

                          I am currently seeing doctor Dan Lieber of the Angeles Clinic at St Johns hospital in Santa Monica. Based on this website, he was one of the two top docs in LA. The other was USC. http://tcrc.acor.org/experts.html#la

                          He's a nice guy and is really into emailing Dr. Einhorn in Indiana for correspondence when he doesn't know an answer. He also is pretty cautious in A. Following Einhorns cookbook protocol that was put together for me and B. Running lots of pre-tests when I have a slight indication of a problem. He sent me next door to get a new lung function test when I complained about a little chest heaviness prior to my Bleo shot earlier today. Turned out to be Acid reflux, but at least he didnt gamble my lungs after they sounded clear to him listening in his office. I hope this information helps. I just wish this chemo regime wasn't literally killing me at the moment. It's 3a here and just now I am finally getting past my Bleo shot fever which started at 7p. I seem to get every damn side effect possibly listed and its really wearing on me. Then again, im 39, so my body isnt able to rebound like some of the younger guys here. I've been having a lot of brain fog and tinnitus so this week he is contacting Einhorn and the other top doc in LA at USC to get their input. Very collaborative guy. At the end of the day though, I don't think there are a ton of experienced docs here in LA. I live in Westwood, so I tried to talk to a doc at UCLA for a 2nd opinion and that was disaster as none of the people there could seem to know who was their TC expert. Not a good sign. If you are closer to downtown, then the USC doc might be a good choice.

                          Please let me know if you have any questions. This is the toughest thing I have ever gone through. My thoughts and prayers to your husband (and you) in getting the right information and experts. Rob

                          Comment


                          • #14
                            Thank you for the information Rob. I am so thankful for everyone's responses and encouragement.
                            3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

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