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  • Decision to make.

    My situation is as follows and am willing to listen to anyone with similar diagnosis or situation. Had I/O 2/3. AFP started at 350 is now normal, along wit other markers. Tumor is 50% teratoma, 40% yolk sac, 10 EC. Saw Dr. Einhorn and said there is a new study that 1 dose BEP will give me 99.5% chance of no relapse. Right now he says I'm around 80%. Surveillance I know is a very good option, anyone know of anyone who has relapsed with a tumor makeup similar to mine. Problem is I suffer from high anxiety and worry a little too much. My urologist said that surveillance is OK because I have had elevated tumor markers, if cells spread my markers will elevate and will be able to catch more quickly. The way I look at it one course of BEP will possible eliminate the 3 courses plus possible surgery to remove teratoma in the unlikely hood it spread. What is one course of BEP like, any major side effects after one round. I have to make this decision by monday as my onc. said it will be 6 week point. One more week I will be on surveillance. ANY SUGGESTIONS WILL BE APPRECIATED, I KNOW I HAVE ASKED SIMILAR QUESTIONS BEFORE. Jason

  • #2
    Jason, I think surveillance is the way to go.
    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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    • #3
      Hi Jason,

      I had 40% immature terratoma, 20% yolk sac, 30% EC & minor seminoma. My AFP (10) and HCG (19) were only slighly elevated before surgery.

      You might not have the risk of as many long term side effects with 1 cycle of chemo, but in short term you will notice it. My first cycle left me really tired, I lost hair just as I was going to start the second cycle, and got lots of mouth ulcers which really really hurt. Some people really feel the naseau too, but I was lucky in that it didnt hit me too hard.

      I know its a tough decision. I'm in the group that relapsed, and I still think surveillance was the right call at the time, based on the facts I had. An 80% chance of no chemo sounds pretty good.

      Steve
      Left I/O March 05, nonseminoma;
      Relapse July 05, single lymph node 3cm;
      2 x BEP Aug / Sept 05, node grown to 4.7cm;
      2 x VeIP Sept / Oct, node grown to 6.7cm, markers normalised;
      RPLND Dec 05, no active cancer;
      back on surveillance

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      • #4
        I too am on surviellence. My tumor consisted of 90% immature teratoma and 10% yolk sac. My AFP was 35. I chose surviellence after a lot of research. My decesion was between a RPLND or surviellence. I chose surviellence and am reaching my 7th month mark cancer free. I know it is a tough decesion and if you have any questions ask them on this forum. I can't tell you how this forum has helped me pull through some difficult times. Take Care
        Right I/O- 9/12/2005

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        • #5
          If you were my son I would try and lead you down the surviellence route. Unless the chemo is required 100% I would avoid getting it.
          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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          • #6
            Thanks for the replies. To me it seems there has been alot of relapses even though percentages were in their favor. I don't know if this is wrong but it seems to me that if people had a chance to be 99.5% cured or around 80% cured wouldn't you choose the higher amount. This is really a tough decision for me and everyone I understand has their own opinions.

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            • #7
              If you go into surviellence you have an 80% chance of never needing chemo. If you fall into the 20% that will need it your cure rate is still 99.5%.
              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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              • #8
                When I was told that I had a 80% chance of being cured already, I thought of a hundred guys standing side by side. 80 of them being cured and the other 20 needing some more treatment. I thought to myself, whats not to say that I am one of the lucky 80. I am not a gambling man and I know that if the cancer did show its ugly face again, my chances of being cured are excellent. I know it is a tough decesion, believe me that I spent more than one night lying in bed thinking what I should do. But I put my life in God's hands and I know he is looking out for me. Being that I am reaching 7 months on surviellence my chances of being cured are probably now at 85-87 percent, which only makes me feel better about my decesion. Leave chemo out till you really need it, but that is just my opinion. Take Care
                Right I/O- 9/12/2005

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                • #9
                  I guess my main concern is that if I do the chemotherapy now I can basically eliminate a future surgery. It has been 6 weeks since I/O and tumor markers have normalized, is it save to say chances are slight higher than 80%.

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                  • #10
                    cure rate

                    Dadmo

                    Where did you find that the cure rate is still 99.5% ??
                    I think it's a little bit high.
                    Please just give me info about this 99.5% i am curious

                    Thank you
                    Eric

                    Stage 1 seminoma in august 2001
                    with invaded spermatic chord and treated with RT
                    Relapse november 2005, 4 BEP and now back to surveillance

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                    • #11
                      Originally posted by sjsamgolf
                      I guess my main concern is that if I do the chemotherapy now I can basically eliminate a future surgery. It has been 6 weeks since I/O and tumor markers have normalized, is it save to say chances are slight higher than 80%.

                      Trust me,you don't want to go through chemotherapy if it's not warranted.
                      Save chemo for IF and when it's needed.

                      Best Wishes
                      Dec/04-Right I/O-nonseminoma (95%E/C),Stage 1, surveillance
                      Nov/05- 2.2 cm lymph node= Stage II A
                      Nov/05 -Jan/06-3 x BEP
                      Jan/06 -Surveillance



                      ___________________________________________

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                      • #12
                        Thanks for the replies. It just seems to me that a vast majority of people relapse, why not do something to avoid the relapse. I understand I have low EC and no VI but why not increase your odds at the present time. Everybody seems to be against chemotherapy and trust me it scares me also, but wouldn't one cycle be much better than three w/ possible surgery after. Dr. Einhorn is presenting this new study in June. I just e-mailed him the other day and to his credit within hours he replied. Thanks again for all the input.

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                        • #13
                          Originally posted by sjsamgolf
                          I guess my main concern is that if I do the chemotherapy now I can basically eliminate a future surgery.
                          No, chemotherapy now won't prevent future surgery. If there's teratoma, surgery will be required either way.
                          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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                          • #14
                            Hi Jason.

                            The risk of spreading is not easy to asses, but 2 factors are known specifically to enhance the risk.
                            1. If your tumor consisted of more than 80% embryonal carcinoma.
                            2. Vascular and lymphatic invasion (tumorgrowth into blood and/or lymphatic vessels)

                            If 1 and 2 are present there is a 70% relapse rate within the first year.

                            However, 10% EC is good. And no invasion is even better.
                            For now, I would say surveillance. But I grant you that 99,5% is a compelling figure...

                            Best wishes
                            Jens
                            Embryonal carcinoma, stage II,
                            3 x BEP, apr - june 2005
                            Surveillance

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                            • #15
                              Fortunetely I have only 10% EC and no VI or LI. I guess most would say surveillance. Trust me I'm a gambler, I love to gamble. I also like odds and to me 99.5% seems to be better than 80%. Maybe I'm wrong, I don't know. Have you ever heard of long term side effects from 1XBEP. Once again thanks for the replies. How do you cope w/ surveillance? Isn't it rough, it has been six weeks for me and I think about it all the time.

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