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  • Worried about tumor type

    Hello everyone, great to have found this forum. I have been reading it for days now. I have a question regarding my tumor type.

    My Urologist said that I was very lucky to have come in so quickly after noticing a lump in my testicle. US confirmed solid mass, had my right I/O 2 days later.

    I had blood work and CT scan done the day before the surgery. Those results were:
    • AFP: 6.8 ng/mL
    • LDH: 269 U/L
    • HCG: <1 Iu/L
    • CT Scan: No evidence of metastatic disease in neither abdomen nor pelvis..
    The pathology report read (verbatim):
    ‚Äč -Embroyonal Carcinoma, measure up to 3.3cm, limited to the testis with focal invasion of rete testis without invasion of tunica lbuginea
    -Epididymus and hilar soft tissue are free of tumor involvement.
    -No lymphovascular space invasion is identified.
    -Resection margins are free of malignancy
    -Pathological stage: pT1b pNX.

    I had blood work done 6 weeks after my I/O surgery. Those results were:
    • AFP: 2.9 ng/mL
    • LDH: 197 U/L
    • HCG: <1 Iu/L
    At this point surveillance was recommended. I have follow up CT scan & blood work scheduled for February 18 (roughly ~5.5 months post I/O op)

    I reached out Dr. Einhorn, and he agreed with surveillance, but still recommended I come and see him, which would be ideal but I am in metro-Atlanta area. Very far.

    I have a few questions:
    1. How do these results look to yall? Would you agree with the recommendation of surveillance?
    2. Does my pathology report mean I have 100% non-seminoma? It doesn't explicitly state this.
    3. If it is non-seminoma, i'm fairly high risk of relapse correct? fml.
    4. At 4 months post surgery, I have been experiencing a slight pain in my remaining testicle. This has me scared to death that the cancer is back. I have read that these pains are normal, but I don't really know what to think. The pain seems to shift from behind the left testicle, to the right side of the scrotum (skin level). Self examination did not feel anything hard.
    5. I occasionally get lower back pain. It's most likely from bad posture and/or stress, but my mind jumps to cancer in the lymph nodes. Any suggestions on this anxiety?
    Thank you all for providing such a welcoming and informative community. If someone is in the metro-Atlanta area and would like to meet up for a coffee/beer just to talk, please reach out to me, and I am there!

  • #2
    Hi Taro!
    Sorry to welcome you to the club, but welcome!
    I am not qualified to comment on the medical aspects, but if both docs have suggested surveillance, that's a good idea. Even if it is nonseminoma, and the risk of recurrence is somewhat higher than seminoma, try to remember that the most likely outcome is no recurrence!

    In terms of #5, I too was very anxious after my diagnosis, and it took me a long time to figure that out, so the fact that you've got a handle on that early on is really good. I took a few wrong turns along the way, including getting pretty depressed and spending a lot of time in bed and not pushing myself. I also spent way too much time researching - that was good and bad - good because I learned a lot, bad because it kept me thinking about it all the time.
    So, it is hard to say what will make those anxious feelings go away - it takes time and perspective - but there are things you can do in the short term to help settle your mind.

    1) There's some pretty solid research showing that intense exercise is really helpful. Once you're healed up from the surgery, get on doing some kind of intense exercise. I myself do the rowing machine because it's what I'm used to, but running, swimming, anything that gets you moving and breathing hard is good.

    OK, not research, but my own personal experience:
    2) get outside every day, if you've got a dog, take it for a long walk. If you don't have a dog, go on a 15-30 minute walk around the neighborhood and try to force yourself to concentrate on something you don't ordinarily pay attention to - like the birds, or how the electrical lines are connected to the houses, or the tree branches, or whatever - the point is to try to see "new things", either by going to a new place, or seeing new things in a familiar place.
    3) Let other people help you. It may feel indulgent to have someone else cook a meal for you or help clean your house or just talk for an hour on the phone, but people are eager to help if you reach out and ask.
    4) Get your tests and scans done before the meeting with the oncologist/urologist. Schedule your bloodwork and scan for a few days to a week before meeting the doc, so that they have the results in hand when you see them.
    5) Avoid the patient portal - especially radiology reports. There are often a lot of incidental findings that come with very scary names. Myself, I open it up only when I'm literally in the doctor's office - I get there an hour before the meeting to give myself a little time to get familiar with what's in there, but no so much time to freak out about it before talking with someone who knows their $#!*.

    I live in Providence, RI, but I should be down in Atlanta for a meeting in May/June. Let's get together for a coffee!
    Painless lump 5/18/2017
    Orchidectomy June 2017 (4.5cm, rete testis involvement)
    Chemo Summer 2017 (2x7AUC carboplatin)
    No evidence of relapse since, but plenty of anxiety about it.

    I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.


    • #3
      1- Test results all indicate good things.
      2- Pathology reports vary, but yours seem to indicate 100%EC.
      3-EC tends to be more aggressive, but with no indication of spread, your odds of being cured are pretty good.
      4&5- Odd pains are pretty normal & so is the tendency to link everything to having TC, odds are good there is nothing bad going on. If you had not had tc, you would likely have just brushed those pains off.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP


      • #4
        billandtuna, thank you so much for your response. I cannot tell you how much of a help you have been to not only my post, but all the other posts you respond to. I'm not an overly religious guy, but bless you man. Thank you.

        I agree 100% with you in regards to not using patient portals, and scheduling the scans a week before my visit with the Urologist. That helps a lot.

        I will PM you my cell phone number, please do reach out when you are in town, I would love to meet with you.

        Thanks again!


        • #5
          So far you have a very textbook case of TC, nothing to be extra worried about. Just stick to your scans and labs and checkups religiously and you should come out the other side A-OK. Statistics are very much on your side for Stage 1.
          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: begin 4xEP, end 9/18/15
          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!
          10/22/19: all clears up to this date!