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  • Past 4 weeks were scary and changed my life

    I am 39 years old. I am married with a 4 year old boy. I have been doing self exams every few months since I was 18 years old in college. It was in college where I received a pamphlet on testicular cancer and a handout on self-examination. My mother and father both had extensive bouts with various forms of cancer, so I know the importance of early detection. About 4 weeks ago, I felt a lump at the top of my left testicle that I never felt before. It went through me like a knife when I felt that lump. I couldn't tell if the lump was in the testicle or above it. I called my family doctor the next day and he wanted to see me immediately. He was also able to feel the lump, but could not tell if it was in the testicle or above it. He referred me to a urologist. To make a long story short, the testicle was removed last week and I did have testicular cancer. The tumor was about 1 cm in diameter and it was seminoma. Needles to say I am scared, but the urologist says my prognosis is very good because the cancer was caught early. All tests (including CAT Scan) indicate that the cancer has not spread. I was a nervous wreck over the past 4 weeks until all the test results came back. I am to see a radiologist in 6 weeks to discuss the possibility of radiation treatments. It's amazing how your life can change in 4 weeks time. I want to do everything I can to beat this because I want to raise my son. I'm glad that I found this support group forum. I plan to read more postings within the next few days.

    When I left the doctor's office this week, the doctor said to me that my self-exam saved my life. When he said that, it really impacted me. I think that as much emphasis should be placed on men doing self exams as it is on women doing self-exams of their breasts. This disease needs to be made known to young men.

    I am thankful to God that I can beat this.

  • #2
    js:
    Congratulations on doing those monthly exams and for getting to your doctor when you found something. You can't even begin to imagine how many people stop by here who have symptoms and we have to be them to see a doctor.
    Have your doctors done a complete staging? If you are indeed stage I you might be a candidate for 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.

    Comment


    • #3
      Originally posted by dadmo
      js:
      Congratulations on doing those monthly exams and for getting to your doctor when you found something. You can't even begin to imagine how many people stop by here who have symptoms and we have to be them to see a doctor.
      Have your doctors done a complete staging? If you are indeed stage I you might be a candidate for surveillance.
      You know, the urologist never really said what stage. He only said that it was caught very early and there is the possibility that the radiologist may not want to do radiation treatments. I see the urologist in a couple of weeks again for follow-up. I will confirm that I am considered stage I. Any other suggestions for questions to ask would be greatly appreciated. I want to make a list this time so I don't forget to ask anything. My wife has a concern about fertility after any radiation. Another child for us is not out of the question. I guess we may have to bank sperm to be sure?? There are a lot of things I have to get answered in the next few weeks. Thanks for your comments and encouragement.

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      • #4
        Originally posted by jsprenk55
        You know, the urologist never really said what stage. He only said that it was caught very early and there is the possibility that the radiologist may not want to do radiation treatments. I see the urologist in a couple of weeks again for follow-up. I will confirm that I am considered stage I. Any other suggestions for questions to ask would be greatly appreciated. I want to make a list this time so I don't forget to ask anything. My wife has a concern about fertility after any radiation. Another child for us is not out of the question. I guess we may have to bank sperm to be sure?? There are a lot of things I have to get answered in the next few weeks. Thanks for your comments and encouragement.
        Welcome!

        1 cm is really small...Radiation may not be your best option. By the way, it is a radiation oncologist, not a radiologist, that will give you info on the radiotherapy. The alternatives are adjuvant chemo or surveillance. Surveillance is not an easy path. I was sure I could handle it, but every little pain or discomfort sets me off. Still, I'm sure I still would have opted for it even if I knew it would be this hard.

        If you decide surveillance (and it should be your decision to make IF you have no evidence of LV invasion on the path, no evidence of spread, and you are not what docs refer to as "a flight risk" or "a flake"), then you will have CT scans every 3-4 months for the next 3-4 years. Not fun. Radiation will be 10-15 doses 2 or 3 weeks on a beamer, with some chance of long term second cancers. Check out



        For further info.

        One more note: If you are waiting another weeks to see the radiation oncologist, then you are already on surveillance. You're first CT scan should be right after that meeting!
        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.

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        • #5
          js:
          Certainly follow the link djmac gave you, and if you look on the left hand column you will see a link to "questions to ask". This will give you great question to ask your doctors. I don't anticipate that the doctors are wrong but see if you can't move that next visit up a bit. That should normaly be done about 10 days after the testicle is remove and if treatment is required you want that to begin within six weeks of the initial diagnosis. Staging information is important and that wont change but treatment is given to you as options and that choice (with guidance) is yours alone to make and if you go past the 8 week mark you are in surveillance without being given that choice.
          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.

          Comment


          • #6
            jsprenk55,

            Must be something in the water in PA. I am also 39, live in PA, have a 5 year old son and was diagnosed with pure Seminoma, Stage 1 with a 1cm tumor. Sounds as if you are getting ready to make all of the choices I was faced with last June. Make sure you ask lots of questions and get all of the info on possible side effects of RT and what your Doc's proposed sureveillance schedule would be. I went the RT route because I wanted to be proactive and I wasn't sure I could handle the stress of surveillance, but everyone is different so weigh all of your options. The good news is no matter which route you go you'll be cured!!

            BTW - Where in PA are you being treated?
            tlh
            diagnosed 28 June 06. Orchiectomy 29 June 06. Stage 1 Seminoma with no evidence of spread or Vasc invasion. Finished adjuvant RT (27Gy) to abdominal and pelvic area August 28th, 2006.

            Comment


            • #7
              Originally posted by tlh
              jsprenk55,

              Must be something in the water in PA. I am also 39, live in PA, have a 5 year old son and was diagnosed with pure Seminoma, Stage 1 with a 1cm tumor. Sounds as if you are getting ready to make all of the choices I was faced with last June. Make sure you ask lots of questions and get all of the info on possible side effects of RT and what your Doc's proposed sureveillance schedule would be. I went the RT route because I wanted to be proactive and I wasn't sure I could handle the stress of surveillance, but everyone is different so weigh all of your options. The good news is no matter which route you go you'll be cured!!

              BTW - Where in PA are you being treated?
              Thanks for the advice. I am being treated in York PA.

              Comment


              • #8
                Originally posted by dadmo
                js:
                Certainly follow the link djmac gave you, and if you look on the left hand column you will see a link to "questions to ask". This will give you great question to ask your doctors. I don't anticipate that the doctors are wrong but see if you can't move that next visit up a bit. That should normaly be done about 10 days after the testicle is remove and if treatment is required you want that to begin within six weeks of the initial diagnosis. Staging information is important and that wont change but treatment is given to you as options and that choice (with guidance) is yours alone to make and if you go past the 8 week mark you are in surveillance without being given that choice.
                The urologist saw me about 8 days after after my testical was removed. He basically looked me over and made sure that I was healing OK. At that visit he told me that it was definitely seminoma based on lab tests. He will be seeing me again on March 14 (which would be 4 weeks after surgery). At that visit he will be making my appointment with the radation oncologist. The urologist said that I need 6 weeks to heal before radiation. Does this sound about right? Also, I did have a CT scan and chest x-ray a few days before my surgery which showed no spread at that time. I plan to discuss with urologist when my next CT scan will be. Sounds like your saying I should make that appointment with the radiation oncologist ASAP. Maybe even before my next visit with the Urologist?
                Last edited by jsprenk55; 03-02-07, 11:16 PM.

                Comment


                • #9
                  Everything's moving along fine but are you sure you need radiation? Follow this link for an explanation fof treatment at different stages, with stage I seminoma surveillance should be seriously considered.
                  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.

                  Comment


                  • #10
                    Originally posted by dadmo
                    Everything's moving along fine but are you sure you need radiation? Follow this link for an explanation fof treatment at different stages, with stage I seminoma surveillance should be seriously considered.
                    You are right. I am going to consider all alternatives including serveillance. The Urologist even said that the radiation oncologist may recommend surveillance. I am going to see what the radiation oncologist recommends at my appointment with him. Thanks for your continued support and help. I really appreciate this. I will keep my progress posted here.

                    Comment


                    • #11
                      Keep us posted as you and your doctors decide what path to take. You're going to come through this in great shape!
                      Scott, [email protected]
                      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


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                      • #12
                        jsprenk55,
                        When my path report had revealed seminoma, I was pretty much dead set on getting the adjuvant radiation. My entire treatment team (and I mean everyone: two med oncs, the rad onc, and my urologist) agreed that since my viable tumor was < 1 cm and there was no LV invasion, XRT would likely be overkill considering the potential long term side effects; hence, they recommended surveillance. What convinced them further is that they trusted I would adhere to a stringent surveillance schedule since I actually work at the cancer center and have easy access to a testing facility. Their unanimous opinion convinced me to change my mind.
                        Of course, there's always the anxiety before the labs (my last set was on Valentine's Day week, and I was a bit on edge -poor planning on my part), but I trust it gets easier as time goes by. What I always keep in mind is that, in the off chance it returns, I know I will be catching it early enough to beat it.
                        So far you are doing quite well in being informed. Best of luck in making your decision. Cheers,
                        "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.

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