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Newbie: My 17 year old son was dx on 12/21/16

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  • Newbie: My 17 year old son was dx on 12/21/16

    Hi! What a great site full of information. Back in Nov. my son came to me complaining of pain and being swollen so the net evening my husband took him to Urgent Care where he was prescribed antibiotics.About 2 weeks later my son set he felt better. Fastforward to 12/21 late at night when my son told me he was in pain again. the next morening I was able to find a Pediatric Urologist to see him, and he was dx with a tumor. My son had a right Orchiectomy on 12/22/16. CT SCAN prior to surgery normal. All 3 tumor markers were evlevated pre Orchietcomy. Repeat bloodwork also elevated, but dropped by 1/2. Yesterday's blood work also elevated (still waiting for AFP), but Dr. when he called said the numbers are NOT decreasing as they should. He says Chemo for my son, so we meet Monday morning to discuss pros of Pedi Oncologist vs. adult Oncologist. So far my son has been tx at TN Children's Hospital. At first Urologist was telling us about Surveillance. Any thoughts on whether Chemo is the way to go? Pedi Oncologist vs adult Oncologist for 17 year old? Push for him to bank sperm- he declined last night when I talked to him, he has High Functioning Autism and has never had a girlfriend, so it was awkward conversation, but I did explain that in 10 years he might be more mature and in a relationship.
    Thanks in advance,
    Wendy


    pre-r/o
    12/22/16

    B-HCG 1065.15
    AFP-298.8
    LDH-1119

    12/29/16
    B-HCG 642.37
    AFP- 149.8
    LDH- 540.6

    1/12/17 (over phone) 21 days post surgery
    B-HCG 450
    AFP- still waiting
    LDH- "400s"

    From Path report
    Mixed malignant germ, 7.6 cm
    80% Embryonal, 10% Yolk Sac, 5% Teratoma, & 5% Choriocarcinoma.
    Invasion to Rete Testis, Focus of Lymphovascular Invasion is present w/in spermatic cord
    Pathological Stage: pT2 NO
    Last edited by Trekga; 01-13-17, 06:01 PM.
    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.
    Grant is enjoying his senior year in High School Cancer Free!

  • #2
    I'm not a doctor, but that seems right, his HCG isn't declining like it should, so while it's going down it will probably go back up at some point without intervention. My understanding is that the guidelines say he should get chemo, I am not sure if that is different since your son could be considered pediatric. I would try my best to get him to sperm bank. Sorry yall are in this position, but yall will get through it
    Dx March 21 2016
    Right Orchiectomy march 25 2016
    60% embryonal 35% yolk sac 5% seminoma
    positive node on CT 1.4X1.3cm stage 2a markers rising, HCG 2300 AFP 25
    Started 4xEP april 2016
    Finished chemo July 2016, markers normal, complete radiographic remission
    RPLND MSKCC Aug 2016, removed something like 60 nodes all negative but one with teratoma
    Surveillance

    Comment


    • #3
      Hello Trekga,
      First, I want to say I'm sorry you and your son are going though this. At 18, my son was seen by an adult oncologist, but when he was hospitalized during chemo. the hospital wanted to put him on the pediatric floor. Everybody was a bit indecisive, but he received great care. Please encourage your son to sperm bank. My son wasn't confident about going, but he did and is glad he chose to do so. I believe there is a good possibility your son will need chemo. I think either an adult or pediatric oncologist who is competent in TC would be a fine call.
      9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2017.

      Comment


      • #4
        Hi Wendy, what a scary thing to go through with your 17 year old. Not that it makes it easier when your son is an adult and a father himself.... I agree with the others that sperm bank would be a good option, but understanding your situation just do what you can. It is a bit of a nightmare really but hopefully we can all wake up and live a normal life again once this is over. Hang in there and ask any questions you have. This forum is priceless for answering questions and support.

        Comment


        • #5
          Thank you all for replying. I will ask the Urologist on Monday about another round of blood work, and we should have the AFP back from Thursday afternoon.
          I talked again with my 17 year old about Sperm banking, and he is not on board yet. Reminder he has Autism and co-exisiting disabilities.
          If he does need Chemo we will consult with Dr. Eihorn, and use the Pedi Oncologist and he will be treated at TN Children's. Again thanks for replying, I have been reading a lot of older posts. Knowledge is a good thing.

          Anyone have slow to decrease markers after Orchiectomy 3 weeks post, and not need chemo?
          My son's #s

          pre-r/o
          12/22/16

          B-HCG 1065.15
          AFP-298.8
          LDH-1119

          12/29/16 1 week post r/o
          B-HCG 642.37
          AFP- 149.8
          LDH- 540.6

          skipped a week due to school/work


          1/12/17 (over phone) 21 days post r/o
          B-HCG 450
          AFP- still waiting

          LDH- "400s"
          Last edited by Trekga; 01-15-17, 12:20 PM.
          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.
          Grant is enjoying his senior year in High School Cancer Free!

          Comment

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