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Dr's Visit - Not what we expected!

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  • Dr's Visit - Not what we expected!

    Monday Patrick went in to have a cat scan and bloodwork. He hasn't had anything since January. at that time, his bloodwork was fine, but his cat scan showed a hematoma that the dr. wanted to check on after 4 months. The hematoma was from his RPLND surgery. Yesterday we went in to see Dr. Kamat for the results. His Cat scan was good! He said the hematoma had shrunk and no issue anymore. His blood work was a different story. His HCG level was elevated. His testosterone level, though way within the normal range, had come down a little bit. He wanted to see if the testosterone level affected the HCG, so he gave Patrick a testosterone shot. In two weeks he is to go back to have his blood drawn and chest xray and a chest cat scan. 6/6 he is to go back to see Dr. Kamat. He said that if the chest xray showed anything or the HCG level was still elevated he would be looking at 2 rounds of chemo. SHOCK!!!! Mike and I are in that incredible fog again, and Patrick is angry and in denial that chemo can even still be an option. In his mind, this was supposed to be over!!! He is really having a hard time and trying to start his new summer job at the same time. Two days before his orchiectomy his HCG level was .8. It is now 1.4. Dr. Kamat doesn't even want it on the radar screen he said. Patrick wants to know right now, and the waiting is driving him crazy. Dr. Kamat said that the extra testosterone may make him cranky and moody. We are going to the Indy 500 and to family events in Indianapolis next week, so that will help him take his mind off of things - hopefully, but right now it is really rough.
    Son (21) Diag 8/26/05;non-seminoma stage I;embryonal carcinoma; right I/O 8/29/05;RPLND 10/21/05

  • #2
    Hi, just read your post and know how you feel.....I am sure everything will turn out fine....take it one day at a time.....keep in touch....I will say a special prayer for all.......Mary Ellen


    • #3
      stay positive and enjoy yourselves in indy!!! you are in my thoughts and prayers!!!
      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


      • #4
        An HCG of 1.4 is still low. It may very well be a result of low testosterone or a lab problem. I wouldn't assume cancer unless the HCG really spiked. It may not help but read Don's story "not the results I wanted" his HCG went to 16.1 and then just returned to normal. Stay strong and enjoy the 500.
        Last edited by dadmo; 05-17-06, 03:00 PM.
        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.


        • #5
          HCG =1.4 ???....the normal range is <=5.
          Stage III EC 85% + Sem 15%
          AFP=2.6; HCG=10, 20,28 and rising
          FULL CAT scan:
          -abdominal lymph clear
          -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
          4 x BEP changed to 3 x BEP at my request
          from 2005-05....Surveillance


          • #6
            My personal opinion is that an HCG change of 0.8 to 1.4 is within the error range of the test. And as others have said, I would only worry about a continuously rising hcg or a sudden spike to double digits. Again, my personal opinion - before I started chemo with only criteria being an HCG level at 1.4, I would seek a second opinion.

            I had two AFP measurements 3 weeks apart, processed at the same lab -- the first was 4.0 and the second was 2.9, so this type of variation is not uncommon.

            I do research for a living, and spend a lot of time in a lab. I have a research lab, not a clinical testing lab, but I can tell you, we can run the same tests on the same samples and get this type of variation in the results. None of these procedures are foolproof.

            I understand this was a shock, but please try not to worry too much at this point. Enjoy your trip to Indy. You'll all be in my thoughts and prayers.

            Right I/O 4/22/1988
            RPLND 6/20/1988
            Left I/O 9/17/2003

            Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.