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I am choosing surviellance for stage1 seminoma

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  • I am choosing surviellance for stage1 seminoma

    I have decided to go with surviellance, and I want to thank everyone who has helped me on this site. A thank you especially to djmac, scott, already bald, and sansrt1.

    I have chosen surviellance for several reasons:
    1. There is compelling evidence that my chances of recurrence are low, because my tumor was 2 cm, I am over 35 years old, I had no invasion.

    2. I am a registered nurse and have access to excellent medical care at the university hospital in which I work. I will be vigilent with my surviellance.

    3. After reviewing all the literature, I think there are significant long-term risks associated with radiation therapy and I would like to avoid it if at all possible.

    4. I can accept the chances that it may come back, and I may need further treatment including radiation or chemo.

    5. I know this disease will not kill me, and after reading and talking on this forum my anxiety has diminished dramatically. I can live a good life even with the threat of this disease.


    I will of course be anxious with each ct scan results, but my family and friends will help me through it. I am confident that I can do this, and will keep everyone posted on this forum.

    ps. I am meeting with a medical oncologist to wiegh carboplatin therapy just so I have visited all available treatments.
    Thanks again to everyone!!!!

  • #2
    Congratulations on making that decision, not because it's either right or wrong but it's one that a lot of members struggle with. As long as you stick with your scheduled appointments you should be fine.
    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.

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    • #3
      Good Man!

      All of your reasons are valid... Welcome to surveillance, and don't look back! Be warned, though, it is not an easy path. I'm getting into my third month and I am already starting to worry. My next CT is scheduled by my uro mid-February (4 months). My onco wanted to do 3 months so I may reschedule on her advice.

      The other day, I drew an analogy for surveillance. It's like coming home to find your place was broken into, but then you found nothing missing. But you are certain they MUST have taken something, so you keep looking around, worrying and wondering what it could have been.

      But the thing is, probably came home right after they broke in, and they took off before they had a chance to do any damage. You at least hope.

      Best of luck, Rhoon!

      Regards,

      djm
      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.

      Comment


      • #4
        Always look on the bright side

        Survalience for me is like every 3 months I get that sort of excitement people who play russian roulette must get. And it also encourages me to be healthy.
        Aged 23 ;; 09/06 left I/O ;; Markers normal ;; 100% Seminoma Stage 1. ;; 10x8x16mm & 7x7x8mm ;; rete testis invasion. ;; no vascular invasion. ;; surveillance. ;; HRT.

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        • #5
          djmac I can feel your break-in analogy as you describe it!

          I have also felt the drive to take better care of myself, eating better, and exercising more. I guess this is the "gift" of this disease, giving us more appreciation for the chance to live and be healthy. Here's to hoping it lasts!

          Comment


          • #6
            Originally posted by rhoon
            djmac I can feel your break-in analogy as you describe it!

            I have also felt the drive to take better care of myself, eating better, and exercising more. I guess this is the "gift" of this disease, giving us more appreciation for the chance to live and be healthy. Here's to hoping it lasts!
            It lasts... I've really lost my taste for alcohol and junk food, and coffee is beginning to go as well (though that one is a tough one). Occassionally I will fall off the wagon, and guilt will set in... Lance Armstrong talks about this, too, in "It's not about the Bike".
            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.

            Comment


            • #7
              Rhoon,

              I had chosen what my oncologist called a "watchful wait", but my last CT Scan showed the lymph node cancer getting bigger, so today is my first day into chemo.

              3xBEP is the regimen,

              Last Friday I went in to get a PICC, so that I won't have the trouble many posting here have had with needles and veins collapsing.

              Wish me luck!

              Comment


              • #8
                Owen, although I hope I never need chemo, you will be cured quickly with it. All of us who choose surveillance know that we may one day be in your shoes, but we hope to avoid treatment that is not needed. I hope you do not regret waiting and watching, because there was a good chance you did not need the treatment you are now receiving.

                You will be cured with chemo, and yes it will be a drag, but over quickly and then you will get on with your life.

                Heres to a speedy recovery!

                ps. How long ago was your orchiectomy?

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                • #9
                  Rhoon,

                  I had the operation about 8 weeks ago (I barely remember my birthday), so was due for the second CT scan las week.

                  It was funny, actually, I went to the Oncologist anticipating starting chemo on the Monday after Thanks giving, and that was when the Dr. told me my "Advocate" had brow beated him onto calling Dr. Einhorn, who suggested waiting another week, doing the second CT Scan and seeing what changes had occured (I guess 15%+ of lymph node cysts are benign).

                  Although I am very happy with the Dr.s I have, I would seriously suggest folks ALWAYS get a second opinion/reading on any test they have.

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                  • #10
                    Hi Owen,

                    What kind of TC did you have? Its also so interesting how many people seem to get TC right around their birthday (I did as well)

                    djm
                    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.

                    Comment


                    • #11
                      Originally posted by djmac
                      Hi Owen,

                      What kind of TC did you have? Its also so interesting how many people seem to get TC right around their birthday (I did as well)

                      djm
                      Non-seminoma

                      Comment


                      • #12
                        Congrats on making your choice! Although I chose the alternative for my treatment, electing surveillance is just as good of an option. The bottom line is that you meticulously looked at your options, and you sound very confident about your choice. To me, that is extremely important. Best of luck, and keep us posted!
                        "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.

                        Comment


                        • #13
                          Good luck with your choice Rhoon!

                          Hi, I've just Cat scanned clean for the 3rd year. I had surgery on 1-13-2004 for a Stage 1, Pure Seminoma. I followed standard US protocol for follow up CAT scans. I did not receive any other treatment than the surgery.

                          I did consult with many doctors. I sought out second and third opinions. I would estimate 80% disagreed with my choice. It was my choice to make, following much consideration.

                          I was 43 at the time (now 46). My main concern was that I was still young enough to develop a secondary Sarcoma (a much worse cancer than my Seminoma) from the radiation treatments. The secondary benefit was that I did not have to endure these treatments, and the immediate side effects.

                          I am very aware that I am not in the clear, yet. It was my choice. So far, so good!

                          Good luck with your choice Rhoon!

                          Good luck to everyone!

                          Comment


                          • #14
                            Originally posted by Cory
                            Hi, I've just Cat scanned clean for the 3rd year. I had surgery on 1-13-2004 for a Stage 1, Pure Seminoma. I followed standard US protocol for follow up CAT scans. I did not receive any other treatment than the surgery.

                            I did consult with many doctors. I sought out second and third opinions. I would estimate 80% disagreed with my choice. It was my choice to make, following much consideration.

                            I was 43 at the time (now 46). My main concern was that I was still young enough to develop a secondary Sarcoma (a much worse cancer than my Seminoma) from the radiation treatments. The secondary benefit was that I did not have to endure these treatments, and the immediate side effects.

                            I am very aware that I am not in the clear, yet. It was my choice. So far, so good!

                            Good luck with your choice Rhoon!

                            Good luck to everyone!

                            Congrats Cory, on 3 years free...your not in the clear, but your chances are getting better with each and every passing year, in fact if I remember correctly your chances of recurrance at this point is probably smaller than for someone who got radiation! Have the psychological issues (fear, anxiety...if they ever existed) gotten better with time? Also, could you give some insight on your original pathology?

                            Thank you for posting... it's great to hear from someone on surveillance for seminoma who is that far out!

                            Best,

                            djm

                            PS In my case surveillance was not only my choice, but also preferred by my uro, and, ironically, by my radiation oncologist!
                            Last edited by djmac; 12-31-06, 01:59 AM.
                            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.

                            Comment


                            • #15
                              response to djm

                              djm, the psychological affects seem to be less now, than early after surgery. The more time passes the more hopeful I become that I may not have a reoccurrence. This can change at a moments notice! Keep in mind that there would still be a chance of reoccurrence even if I had radiation treatments.

                              I have had a couple of scares along the way. I went to the O.C. Hoag Hospital Emergency Room for an ultrasound check (on a holiday weekend). I was sure it came back, before I received the test results. It was a false alarm. I must have just tweaked my remaining testicle, which caused some swelling. What a relief! I had to go to Emergency; I don't think I would have been able to endure the wait over the long weekend.

                              Another was just this last summer; I had an aching pain where my abdominal lymph nodes would be. I was holding my breath 'till this last CAT scan. Again, what a relief!

                              So the fear and the anxiety are still there off and on, although, just less in general. I seem to recall, that I had researched, that I had a 20% chance of reoccurrence at the time I made my decision not to have radiation treatment. My Primary Oncologist said that I would have to radiate anyhow if I had a reoccurrence.

                              Although, I understood that it would very likely require chemo if it did come back, the doctor said we'd have to see where it appears, before that would be decided. We both decided that it was not the best idea to expose myself to the possibility of (a much worse) secondary Sarcoma, as a result of radiation treatments. Believe it or not, both of the Radiation Oncologists I consulted with were cool with this choice, and actually agreed. Of course, they wouldn't have turned down the business had I decided in favor of radiation treatments.

                              I should add that the cancer had no indication of having traveled, or spread, from its original location. My decision did not come lightly, and was done with a GREAT amount of research, thought, and personal consideration. Don't let a doctor decide for you! Make your own choice you have to live with it. I consulted some of the best doctors all over Southern California (Los Angeles and Orange County). One highly regarded Urologist, at Cedars, told me that, "if I were his patient, I would radiate or I wouldn't be his patient". I just said, "Thank you" and left.

                              Sorry about the long post. You asked!

                              I'm just trying to pay back here for all the information I got on these TC sites when I really needed it. I really hope this helps some of you make the right choice for yourself that you can live with!

                              Thanks again djm. Following is a clip of my pathology report that you requested. I had two done, just to be sure!

                              Take care. Good luck to everyone!

                              DIAGNOSIS:

                              RIGHT TESTICLE, ORCHIECTOMY:

                              -Seminoma (See comment)

                              -Tumor mass measures 3.2 cm in greatest dimension

                              -Seminoma confined to testicular parenchyma, without
                              invasion/involvement of tunica albuqinea or tunica vaqinalis

                              -No anqiolymphatic vascular space identified

                              -Epididymis, negative for malignancy

                              -Spermatic cord, negative malignancy

                              -Tumor-associated necrosis and inflammation (including marked granulomatous reaction)

                              -Background seminiferous tubules with significantly diminished spermatogenesis (atrophy}

                              -Pathologic stage: pT1MxMx (AGCC 2002)


                              1/29/2004

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