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Surveillance VS 2xBEP after RPLND

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  • Surveillance VS 2xBEP after RPLND

    So I have a few questions about what I should do after my RPLND. Little background, i was diagnoses with TC on Mar 1st and had an I/O on Mar 23rd, the pathology came back as 95% EC and 5% yolk sac with LVI. So from there they staged me at 1b and gave me the option for either surveillance or RPLND or chemo. My wife and I came into this saying we were going to do everything it took to try and eliminate this as much as possible, but wanted to avoid chemo if all possible. So i decided to go ahead and do the RPLND, i had the surgery on Apr 11 and once i was awake the doctor said everything looked good and didn't see any signs of enlarged nodes. Well once the pathology came back i had 4 nodes positive with EC. The largest being 1.8cm, so nothing huge but still shocking to me that it had made it to my lymph nodes. Let me go back a little bit and explain i did have a CT done and a chest Xray which all came back normal. Also I've had lots of blood work done before the O/I and after and before and after the RPLND and every time all my levels have come back in normal range. So after my RPLND they staged me at a pN1 because there was only 4 nodes and none over 2cm. So they said the preferred treatment is surveillance, but what they said is that if there would have been one more node or one over 2cm then they would recommend doing 2 rounds of BEP. So now i am faced with the hard choice if i want to risk waiting it out and hope nothing comes back or just do the 2 rounds and knock it out and hope the side effects don't do to much damage. But if i do wait and it happens to come back then the doctor said i would need 3 or 4 rounds which would be more toxic. But if i do chemo now i would never know if i ever would have relapsed or if i just unnecessarily did chemo and risked the side affects. So if anyone has any advice or similar situations i would love to hear about it. Thank you

    Last edited by Jalapena; 05-18-18, 12:08 AM.

  • #2
    Those recommendations are right out of the 2018 NCCN guidelines, and are right on point.

    Did the doctor give you any statistics on relapse rates if you go on surveillance at this point? That would be a prime factor to me.

    The other factors to consider are 1) your risk tolerance, and 2) where you will be in your life over the next 2-3 years. If you plan to have kids say next year, 2xBEP is may be much easier to handle right now vs 3xBEP with a pregnant wife or newborn. Some things to think about. Long term your chances of being fully cured are very high, the wildcard is just if there is any undetectable little bit remaining that will require chemo to eradicate.
    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!


    • #3
      Biwi, thank you for the response. The doctor did give me a 25-30% chance of relapse. To most that is not very high but to me i like the 2-4% more. That was another factor, children. We have 4 kids with one being under 2 and my wife is currently pregnant at the time and is due in October. The oncologist said i could start as soon as monday and that way i would be done by end of June. And if i happened to relapse in the next couple years we would have two babies to worry about. Another thing is i am in the military, they might try and medically discharge me before i am able to retire which means i wouldn't have the healthcare like i do now, so that is another factor.


      • #4
        Man I’m in the military to you shouldn’t be to concerned about getting discharged. If you go with one option and you are cured your med board should still grant u to stay in, because you should still be able to do your job. If you have a relapse they should throw you into a WTU unit and let u go through treatment and then do another board. If u were kicked out u would medically retire depending on situation of years served along with other things. Do you have an LOd? are you in a WTU now? I assume ur army, I don’t know why lol. What branch are you?

        I’m currently in a WTU unit out of good for TC. But I’m remote to Arkansas to be with my family during the process. I’m done with chemo but awaiting scans and further evaluation. I’m also in the guard. I jut got lucky to catch mine while on orders for career course engineer captain so the army bought the problem.


        • #5
          Spence, I am in the air force, I have been in for 14 years but the doctor who started my med board said it all depends on what the big air force wants to do. I was recommended to retain but all the big wigs see is paperwork on my issue so they have the final say. Right now I am stuck in Hawaii on med hold until they figure out what they want to do to me. So I'm leaning more towards just doing the 2 rounds of chemo to just reduce my chances of relapse in the future and needing up to 4 rounds. Just hoping its the right decision and doesn't come back to haunt me, but if I don't do it, it could also come back to haunt me in the form of a relapse. This decision is tough for me to make for some reason.


          • #6
            Yeah I see what you mean. I ready a lot on heat about how people do surveillance and then relapse. Seems like quite a bit. But on the other side I’m sure a lot of people don’t relapse you just don’t read or hear about them. I would think if they medboard Yoi out t hat they would grant u medical retirement?... that’s nits that ur med board has already started to. I got Dx in November, did chemo December through January and my med board hasn’t started yet. They are waiting on more clear scans.


            • #7
              I will let others chime in, but if you have done so yet, you might want to email Dr. Lawrence Einhorn at IU- he is a top TC expert and responds quickly.
              Wishing you the best as you decide.
              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.


              • #8
                I'd personally do surveillance. 2 x BEP isn't easy, and not all that different from 3 x BEP in total chemo.

                I'd also check if 2 x EP is an option. I've seen some people do this after RPLND.
                Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                7/1/2015: felt tiny lump on side of R testicle
                7/30/2015: Ultrasound shows 2 intra-testicular masses.
                7/31/2015: tumor markers normal, CXR clear
                8/5/2015: R orchiectomy
                8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                8/14/2015: CT abdomen/pelvis clear, Stage 1b
                8/24/2015: started 1 x BEP


                • #9
                  I'm finding it incredible that the CT scan could miss a 1.8CM node. They can normally pick up sub-CM nodes. Normally, I would be in favor of surveillance, however, if I were in your place I would do the 2x chemo.

                  Reason one: Your tumors have never produced markers, so blood work is unlikely to signal a relapse.

                  Two:The CT scans apparently missed a fairly large tumor, (anything >1CM signals further action), so I would be worried constantly that future scans would do the same.

                  Three: Your original tumor was mostly EC, one of the more aggressive types of TC.

                  The success of surveillance is based on catching a relapse early, that doesn't seem to be a good bet in this case. Chemo is no fun, but hundreds of us have gotten through it with varying side effects.

                  BTW, Doc E will likely recommend surveillance, since you can be cured in the event of relapse, he's not likely to add your personal situation into the equation. He is the best in the field, though.

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