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Another Newbie

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  • Another Newbie

    I've been lurking around for about 2 weeks now and finally made the big leap to post. Well, I was diagnosed on 1/12/07 and had my I/O on 1/17. I had Classic seminoma with vascular invasion. The dimensions were 6.5 x 4.5 x 4.2 cm. CT scan came back clean and blood work, well thats just been a pain since the doctor lost one set and the lab messed up the HGC one on another set. But my AFP was 2.6.

    I'm meeting with my Oncologist for the first time today, which has me a little nervous. But the main thing that has me nervous recently is the "phantom pain" that is coming from where my testicle used to be. I've just seem to be noticing it more, or its around more. Granted, I've been up and about more recently than usual. Does anyone have any insights with this?

    Also, I know that I'll likely be given radiation. How did it affect you? How bad was the skin irritation? Do you get lobster red like some people do?

    1/12/07 - Diagnosed
    1/17/07 - Right I/O - Seminoma with vascular invasion. Dimensions 6.5 x 4.5 x 4.2 cm
    2/14/07 - 3/6/07 - Radiation therapy

  • #2
    i' cannot say anything about your question but wellcome...and good luck for everything!
    left I/O 1/9/07 - 95% embrional carcinoma 5% seminoma with vascular invasion afp 27 bhcg 80- 2/10/07 ct and markers clean, left rplnd 4/23/07 3 microscopic lynph node found with ec - 3/30/09 all clean


    • #3
      I know the phantom pain can sometime be bad but that will calm down with time, it's quite common. Good luck with the oncologist today and don't rule out surveillance.
      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.


      • #4
        Phantom pain is indeed common and hard to explain to anyone who has not been there. Even over one year out I would occassionaly get an odd phanton pain feeling that would quickly pass. If this persists make sure you mention it to your doctors, but if it is as you describe then there should be nothing to worry about.

        Hang in there!
        Diagnosed 5-5-05 (Stage 1 - Seminoma) / Oriechtomy 5-9-05 / Adjuvant Radiation July 2005


        • #5
          Hey dude,

          Welcome to the team! I hope your appointment with the Med Onc goes well today. Make sure you go over all of your diagnostic materials (path report, scans, X-rays, bloodwork) so you can make an informed decision for treatment. My guess (and note that it is just a somewhat educated guess) is that you will likely be steered into adjuvant radiation because of the tumor size and the LV invasion. As dadmo said, surveillance may be an option so long as you are religiously diligent with all your follow-ups. I was originally dead-set on radiation, but my med onc and an external second opinion advised against it in my case (smaller tumor, no LV invasion), so now I'm on surveillance.

          The phantom pains will be there, but don't let them scare you. Since it is likely you have been sedentary for the last couple of weeks since your I/O, getting back into mobile form will likely make you feel sore. Just don't over-do it. As you may have noticed, every day gets better (and if not, tell your docs!)

          Best of luck to you, and if you have questions, keep them coming. Best,
          "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
          11.22.06 -Dx the day before Thanksgiving
          12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.


          • #6
            Well the appointment went well. He medical onc is sending me to a radio onc. I'll have to get a chest CT and chest X-Ray, along with probably more blood work.

            I'm glad to know that the phantom pain is common. It was really starting to bother me esp when the pain meds I already had from the surgery didnt seem to do much.
            1/12/07 - Diagnosed
            1/17/07 - Right I/O - Seminoma with vascular invasion. Dimensions 6.5 x 4.5 x 4.2 cm
            2/14/07 - 3/6/07 - Radiation therapy