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worried about needing chemo after RPLND

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  • worried about needing chemo after RPLND

    Hello,

    My younger brother is 19 years old and was diagnosed with TC on Feb 2 - he had the Orchiectomy on Feb 9, the biopsy of which showed a NSGCT, 90% embryonal and 10% seminoma with LVI - making him stage 1b. He just underwent an open RPLND on March 9, and we should see the biopsy results from that in a few days to another week or so (hopefully). I'm constantly searching the internet for answers on how fast NSGCT grow - if perhaps his lymph nodes will test cancer positive and he'll require 2 rounds of BEP. My brother, even at the age of 19, is super emotionally strong and has mostly had a fantastic attitude, but I can see this is all taking a big toll on him, especially as he's in so much pain after the RPLND. The idea of chemo terrifies him, and every time he thinks about it I can see he's becoming more and more anxious. I've seen varying statistics on how many men with his type of tumor need chemo after RPLND, and they're mostly on our side, but I do know that embryonal tumors are aggressive and likely to spread. If anyone knows how likely it will be for my brother to need chemo, if in fact the chemo isn't as awful as it appears to be, or really anything that might be good to know, I'd be happy to hear it.

    Thank you.

    Abby

  • #2
    Hi Abby,

    I am sorry to hear about your brothers diagnosis and hope he is recovering well from the RPLND. Where about did he have the surgery?

    I can understand his and your apprehension and anxiety about chemotherapy but I would put too much worry to it until the results come back. For example, in a study of 322 stage I nonseminoma patients patients only 19% showed any nodes that were positive and overall only 6% of the 322 patients had pathological stage IIb disease (where some chemotherapy is most likely to be needed) the other 13% had pathological stage IIa disease and are most likely managed with surveillance) http://www.europeanurology.com/artic...10)00788-8/pdf

    Keep us posted of his results but I just wouldn't be to worried about it at this point.

    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

    Comment


    • #3
      Hope your brother is recovering. It is normal to worry until you have pathology back. Thinking of your brother and you, please update when you can.
      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.

      Comment


      • #4
        Hi Mike and Trekga,

        Thank you both. He had his surgery at Memorial Sloan Kettering with Dr. Sheinfeld.

        We got the pathology back and he had one positive cancer node out of 58, making him pN1. Dr. Sheinfeld said that as it was only one mass on one node out of that many, statistically it's as if he's pN0 and he recommended no chemo, which we were relieved at.

        We did want to get a second opinion, though, to make sure no chemo was the right move. We saw Dr. Dawson at Georgetown and she seemed to recommend (but only slightly) chemo, as it would be two cycles of EP (no Bleomycin, which as I understand can be dangerous for the lungs), and he would be physically mostly recovered by the summer in time for a summer camp he hopes to work as a counselor at. She did note that he would loose his hair, which she went into description about towards the end of the consult, which freaked my brother out, as he starts his freshman year of college in the fall and doesn't want to stick out or have his cancer be a big part of his first months of school.

        We're seeing another oncologist this coming week - Dr. Feldman, also at MSK, who we hear is very highly regarded.

        As far as I've read, and as you said Mike, surveillance is preferred, but my family and I are feeling worried about perhaps making the wrong choice and saddling my brother with 3-4 rounds of BEP in the middle of his college career.

        Again, thank you for your kind words.

        Abby

        Comment


        • #5
          I'm assuming that cancerous lymph node that was removed was small in size? He's pN1. He has an approximate 80% chance he's cured at this point, maybe even higher since it's only 1 lymph node affected. Dr Sheinfeld says he's almost pN0, but I don't see it that way. pN0 is when cancer cells were not found in the lymph nodes and it's highly likely the cancer cells did not leave the testicle.

          I know Einhorn would recommend surveillance. I've seen him recommend that in cases like yours. I don't think any TC expert would recommend chemo at this point. Especially given he's much more likely to be cured than not at this point.
          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

          Comment


          • #6
            Agree that surveillance is not a bad choice here. In fact, 2xEP is still a fair amount of chemo. I think I'd rather have an 80% shot skipping any long term chemo complications or effects, than volunteer to undergo 2xEP.
            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!
            3/29/2018 all clears up to this date!

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            • #7
              I can see where you and your family are coming from. You can reach out to Dr. Lawrence Einhorn via email to find out his suggestion, and as mentioned above he will probably recommend surveillance: leinhorn@iu.edu
              Wishing your brother and your family the best as you make a decision.
              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.

              Comment


              • #8
                I could be wrong, but I believe if chemo was done at this point it should be either 2xBEP or 3xEP. Personally, I'd roll the dice & do surveillance, the odds are good, & survival is good even if you lose the roll, just a bit more unpleasant. JMHO.

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

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