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Well, we got our results finally, have a CT question.

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  • Well, we got our results finally, have a CT question.

    No staging as our CT won't be for four weeks. Anyone have any idea why they want to wait 4 more weeks? I will ask on Thursday for our 2 week checkup, but just wondered if there's a known reason.

    Anyway, Pure Seminoma. Our LDH was 300, Hcg was 5 and AFP was 8. I hope this means we did catch it early. The urologist seems to think so.

  • #2
    I was initially staged 1B nonseminoma, 100% embryonal carcinoma. I know it's not the same at all, but in my case they wanted to wait 6 weeks for another CT and more blood work as it had attacked the blood vessels. Nothing showed up on my first CT (1 week after I/O), so they want to make sure they didn't miss something that was too small to spot 6 weeks ago before I get my final staging and start my treatment. I'm by no means an expert, but that might be why? Hoping someone more knowledgeable can chime in!

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    • #3
      Oh, yeah that makes sense. We haven't even had one scan yet. Maybe they're just waiting to see if something pops up by waiting? Hadn't thought of that.

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      • #4
        Probably, not the best practice to wait 4 weeks if none has been done yet. Hopefully, someone with Seminoma will chime in, and help.
        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.

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        • #5
          It's unsettling to me for sure. Plus that's another 4 weeks of wondering what stage we're at. Bleh.

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          • #6
            It doesn't make any sense to me why they would be waiting for the CT scan. I had my initial CT before they even removed the testicle. Now, will the delay affect the prognosis? Highly unlikely. However, just as a patient service why would they have a person sit in wait for that long when they could have had things staged within 48 hours of the orchiectomy (essentially when the pathology was resulted). Perhaps the doctor has some answers that I am not aware of but I have not heard of delays in the initial CT. Some do wait until after the pathology, as I suppose if the pathology came back non-cancerous then the need for CT would be negated and money could be saved but even that is a rarity.

            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

            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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            • #7
              I also had my CT scan prior to orchiectomy. But I had elevated markers and had been complaining of back pain as well.
              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!

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              • #8
                I don't know if it's because of where I live? Took almost 2 full weeks to get the pathology. I think I'll be pressing this because waiting for 4 more weeks is going to be torture.

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                • #9
                  Yeah, the waiting game is pretty horrible. Had my CT done last Thursday, and blood work done today, and I'll still have to wait another 6-12 days before I find out if I'm gonna need 1 or 3 rounds of BEP, and THEN it's gonna be another 3 weeks or so until I actually start my treatment... I never thought I'd think "wow, can't they just start pumping poison into my body already..?"... >_<

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                  • #10
                    YES. Exactly. I mean, we don't WANT chemo but we also really want chemo. Asap. Get this crap out of our lives already!

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