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My Story - Scared to Death

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  • #16
    Based on the discussions I had with the oncologist yesterday I think I am taking the same route. Surveillance he told me would have to be every couple of months for the rest of my life, I guess I am willing to deal with the radiation to try to avoid that.

    On another note I am still having trouble getting over the orchietomy (sp). Its been 12 days now and I had to have the incision re-opened today because it got infected


    • #17
      Fortunately my incision is healing fairly rapidly. It has been 20 days since my surgery, and I just have some very moderate soreness...but still the weird sensations which the doc said is normal. My radiation doc did a checkup on me the other day (the other testicle felt normal - yeah - I already knew that, but was nice to hear it from a pro) and said, "Wow, they did a nice job on your incision."

      I'll tell you, it all seems a bit overwhelming still. Even though I've already received my results, I have to do a PET scan tomorrow......and I still have that eery feeling of "What if" they see something on this one that they didn't see on the CT. My Doc said there is only a 10% chance that they will see anything. Monday I have to go for my radiation simulation.....and then back Friday for an additional test (not sure what...perhaps a 2nd simulation) and the following Monday I start radiation (for 5 days a week, 3 weeks straight). So, still a lot yet to come --- but taking it one day at a time. Beating cancer is a full time job, but someone has to do it.

      I'll also share that I'm kind of going through this, "Ooh..I feel a pain, could it be cancer." Driving my wife nuts....but she is a sport and asks, "Did they not just check your tumor markers and they were negative?". This brings me down to earth, and hopefully I won't become a full-fledged hypochondriac. LOL

      Good luck, and keep up the good fight!


      • #18
        Originally posted by ronniereb
        Based on the discussions I had with the oncologist yesterday I think I am taking the same route. Surveillance he told me would have to be every couple of months for the rest of my life, I guess I am willing to deal with the radiation to try to avoid that.
        Not true... You will get CT scans, chest x-ray and blood work at 4 month intervals for the first 2-3 years, and 2x yearly until year 5 or 6. Then once a year.

        Don't forget, radiation does not guarantee a cure, and you will still have to do follow-ups...albeit not as frequently and with no CT in the irradiated areas (you'll still have to do pelvic if you get paraaortic only). So I would carefully weigh your options. Your age is one prognostic factor in favor of surveillance, so is the absence of LV invasion. If you had a small tumor with no rete testis invasion, you might consider surveillance.

        Good Luck!

        Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.


        • #19
          Here's just a little update on my story. Although pathology indicated a stage I seminoma my CT scan revealed 2 enlarged lymph noded between 1-2 centimeters in total size. My oncologist said there was absolutely no way to tell if they were related to the seminoma, were swollen because of an infection I had in my incision or if mine were just normally a little bigger. He said I should absolutely go with the radiation (24 treatments). I am not sure how to take this news, he seems to think it is nothing to be overly concerned about but 24 treatments seems like a lot.


          • #20

            I am coming in late but I have been following you and your progress. 24 treatments is scary and I am sure it would be a lot for anyone to endure, but keep telling yourself that those 24 treatments will lead to a cure. Some try everything the doctors throw at them and a cure never comes, but I am certain with your case...that you will have a a very happy future. Come here all you want for support, there are many caring people here who are pulling for you.

            Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
            Current DVT
            Current testosterone replacement therapy, Testim.

            "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum


            • #21
              Hey Ronnie,
              Under the circumstances you described, radiation sounds like the right approach. Even though 24 treatments seems like a lot, the total amount of radiation you would be getting is somewhere between 25-45 Gy. This really isn't a lot; for other cancers, the doses are considerably higher. Many have posted here on managing side effects and the like, and RT is a well-proven method for the treatment of metastatic seminoma with 5-year survival rates of over 98%. Hope this helps ease your mind a bit.
              "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.