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Just Diagnosed and general questions

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  • Just Diagnosed and general questions

    Hey everyone,

    I was diagnosed with TC on my 28th birthday (10-12-17) and I have been in a whirlwind of emotions ever since.

    I had my radical left orchiectomy on 10-6 and I have CT scans tomorrow 10-16.

    The pathology was majority seminoma but mixed with teratoma and EC. I had 3 lesions but none were palpable when physical exams were done by 3 separate urologists. The surgeon did say that the tumor was very soft and small, I haven't confirmed but I believe the other 2 lesions may have been the teratomas. The surgeon also said there was no spermatic cord involvement and it all appeared contained on the pathology report.

    My tumor markers were all in standard range of my hospital: AFP - 4.4./ HCG - 1/ LDH-147.

    Obviously being new to this whole world my mind is racing and expecting the worse. My question is I can't really recall when this was caught, my left testicle has always seemed more firm but lately(last couple months or so) it was more firm, with what I could feel as knots inside and I've had lower back pain. I'm wondering how far it could've spread even though signs are all indicating good things, I know tumor marker levels being normal doesn't always mean there hasn't been spread and the lower back pain has me stressed.

    What are the chances of a large scale systemic metastasis with normal tumor marker levels from what I've given?

    Sorry to be so long winded. This website has already been so helpful to educating me on TC. Thanks for any advice!

  • #2
    Hi Kshores1,

    Sorry to welcome you to the club. My understanding is that negative tumor markers, unfortunately, don't provide insight into staging.

    The CT scan will be able to say if there are metastases beyond the testicle. Back pain can be a symptom of a tumor in the retroperitoneal lymph nodes OR it could be a simple backache. It's very common to stress over pains and think they are more than they are. Do the basics like relaxation, massage, and self-care.

    The paper referenced below suggests that ~30% of non-seminomas don't have elevated tumor markers.

    If it gives you comfort, in the unlikely event it has spread, the chance of a cure is exceptionally high.

    Take one day at a time. Focus on your orchiectomy recovery. Do eat well and exercise. Do find an oncologist.

    It's important to be treated by a regional expert who is up to date on TC. Where are you located?

    Age 31 - Portland, OR
    01NOV16- Pain in right testicle, palpable mass
    13NOV16- R I/O. Markers normal
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    06DEC16 - CT scan clear
    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
    03JAN17- Ended 1xBEP; start surveillance
    18MAR17-2nd pathology report shows 90% EC , 10% seminoma


    • #3
      Thanks for the insight mcintoda. I'm in the Charlotte, NC are so I'm not sure of any specialty TC Drs in my area.


      • #4
        Sorry to welcome you here as well and totally agree with mcintoda. The CT results are going to be key. If it were me, I would get copies of the CT results, pathology report and any tumor markers now and going forward, so that you have the results to refer too down the road. Keep us posted on the CT.

        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
        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 if you would like to chat privately so as to avoid any delays.


        • #5
          Do you know the percentages of each cell type? That could factor into its chance of spread. I had 100% Embryonal and it got to my lymph, but I caught it early enough that Lymph were all under 2 cm. The less Embryonal the less chance of spread I'd imagine.
          3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!


          • #6
            Sorry that you are able to post here. Great advice so far, hopefully you have some good support. It is a lot to take in at first.
            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.