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new guy, new diagnosis: Q's

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  • new guy, new diagnosis: Q's

    Hello everyone,

    first of all i'll say that, although this is my first post, i've been viewing this forum rather intensely for about to weeks now, and have come to the conclusion that this is the place to be to ask questions and recieve support. so here goes: i got the news on April 20, recieved a CT scan the 21, underwent the left inguinal orchiectomey the 24'th

    I was diagnosed with stage II nonseminoma, with a "very large mass in the left side of the abdomen, measuring 12 cm in width x approximately 10 cm in AP dimensions and extends in the cephelacaudal demension for approx. 18 cm which had the apppearance of a large necrotic lymph node mass... with another retroperiteneum soft tissue mass measuring 2.3 cm...there appear to be some small retrocrural lymph nodes at the diaphragmatic hiatis the largest measuring 1.2 cm. So basiclly, i have a lot of large "mass" in my abdomen, and i can tell you it's visible to the naked eye.

    my blood tests were returned with AFP level at 3386, and HCG at 1465, i was told this was high. i was then referred to a oncoogist immediatly after orchiectomy, and was told that chemo was necessary, and soon, so i was told to begin the next monday (May1'st) on 4XBEP cycle. However, i was also told that the pathology report would completed by that monday. when i finaly spoke to the doctor on monday, i was told that the pathologist had found nothing but mature teratoma, which is bengin but, as he said, with markers like that there is no doubt that there is a malignancy of some sort in my abdomen, and/or was a malignancy in the testicle, but had either not been found by the pathologist, or had once been malignant but then had subsided into the non malignant teratoma. but question remained, what specific malignancy was it? so, i proceeded with my first cylce of chemo anyway. i'm now in my 10th day of chemo and still no pathology report (completed). today i've faxed my oncoogist and requested he send the specemin to Indiana dept. of Pathology

    i guess my quetion is this: does it sound viable to be jumping into a 4XBEP regime without having my final pathology report (in it's most complete form at least)? I know BEP is sort of the standard, but what if my report reveals something out of the ordinay, will i be going through chemo unnecessarily? and for an entire 4 cylcles? what if i need different/additional chemo drugs?

    thanks in advance for the help

  • #2
    Welcome to the forum. The pathologist is only looking a slices of the tumor, it's possible for them to not get a section with active cancer in it. With the tumor markers for tc being elevated I would say that the BEP is not being wasted. We have others on this site who know far more then I do and I'm sure they will post some very helpful information.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.


    • #3
      Welcome to the club, sorry about the initiation fee.

      You sound a lot like my case; I had a big honker in my retroperitoneum and high AFP also. Your AFP and BHCG are pretty high; because your AFP is over 1,000 it puts your tumor in intermediate risk category, stage IIIB. 4xBEP is the treatment indicated for you at this time.

      Don't freak - my AFP went over 11,000, and I did fine, the residual tumor on my kidney was removed by RPLND and was teratoma. You'll do fine too. 4xBEP should do the trick. Visualize yourself as being a textbook case.
      Last edited by Vinny; 05-10-06, 10:46 PM.
      Vinny (aka Frank)

      left I/O 1/5/05; 95%EC / 5% mature teratoma; stage IIIC
      4x BEP 1/24/05 - 4/11/05; RPLND (left side) 5/31/05
      VATS resection of teratoma from left lung 4/26/06
      Presently surveilling


      • #4

        I agree with Vinny, all of your indications point toward 4xBEP. Your markers are pretty high but should begin to decline with each chemo cycle.

        In my case, my AFP was about 300 but I had mediastinal lymph node involvement above my diaphragm, a Stage III condition. In these cases, an oncologist will hit the cancer with 4xBEP to kill it. My markers were normal after the third round, but the oncologist wouldn't let me out of the 4th cycle, even though I begged him. can expect to finish all four rounds, no matter how lousy you feel.
        Left I/O 6/24/05
        100% Embryonal Cell Carcinoma, Stage III
        4xBEP August - October 2005
        Surveillance since Nov. 2005


        • #5
          my thoughts and prayers will be with you daily! hang in there and things will be better soon. stay positive!!!!
          diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008


          • #6
            Welcome Ryan, my son had an AFP of 84 non seminoma and teratoma....he had four EP and then needed the RPLND surgery for small masses and those turned out to be teratoma....glad you have joined us for suppport, take care...Mary Ellen


            • #7
              thanks very much for the posotivity and info.

              i guess i also have another question, since my doctors are expecting a large portion of the abdominal mass to be mature teratoma, how much is this going to raise the stakes come RPLND day?


              • #8
                If you have teratoma it will nedd to be removed. It doesn't change anything about the actual operation. In fact you want it to be teratoma, if they should find active cancer it will mean two rounds of chemo.
                Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.