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An agonizing decision

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  • #16
    The only thing I can tell you is once you decide just go with it as a good choice don't second guess yourself all the time the doctors will back you up as long as your choice is a good sound one and in your case all of your choices are good ones. What I am trying to say is everyone will back you up no matter what and we will be here to support you no matter what. Once you decide your life will start to get back to close to normal meaning you will worry more about work, bills and keeping people happy more then worrying about cancer . Good luck
    5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07


    • #17
      Quantum - -

      Information is good when it comes to these decisions. However when there are multiple good choices, each with in many ways equal and offsetting pros and cons, it is confusing. I stated before that I wish that my oncologist would have just come out and told me what he actually recommended. Instead, he presented the pros and cons, focusing on the cons of each, and told me it was my decision. I did not find that too helpful, as I could have told him the same based on my reading to prepare for out meeting.

      I agree with Iowa's comment that when you make your decision, go forward and don't second-guess. Good luck to you and keep us informed.
      Right I/O 4/17/06, Seminoma Stage Ib
      RT (15 days) completed 6/1/06
      All clear as of 5/8/09


      • #18
        You are right that there is a good amount of angst when the decision on follow-up treatment is left up to you. It does seem that there would be some amount of calm if the choices were more clear cut. But, in the end, you should find comfort in knowing that which ever path you choose, they all lead to the same destination - a cure! Oh sure, there are things to consider, but the good news is that everything is working in your favor. Continue to educate yourself, ask lots of questions, re-ask questions if you don't understand, want to hear it again, or forget...then make the decision that works best for YOU. It's your body, your life, and your journey!

        Hang in there and continue to be strong.

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


        • #19
          Can we ever have enough information. When my son was diagnosed I got in the zone, I read everything and called everyone, I was even second guessing Sloan. My wife and son were certainly in "a" zone, but they were seeking wellness, and they could only do that because they knew I was taking care of the grunt work. In all honesty it's one of the things I'm most proud of.
          At the same time Jason was diagnosed we had a very dear friend develop cancer, when she and her husband came over my first question was, "who is doing your research" they told me that they were leaving it up to the doctor. They just lived as if nothing was going on. Well, that didn't work and she will lose her battle. It may not have made a difference but two years ago our oncologist gave us the name of someone at Sloan who specialize in her particular form of cancer. They couldn’t be bothered making the trip into the city so they never met this specialist, about six months ago the team she was being treated by recommended that she visit a doctor at Sloan and sure enough it was the same name from two years earlier. Tragic just tragic. She waited so long that she has no shot at a cure.
          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.


          • #20

            Don't lament your curiosity too much. Knowledge is most definitely power. It might be easier in the short term to be that patient who takes no interest in their disease or treatment, but the outcome of that pathway can be tragic.

            Dadmo, I'm very sorry to hear about your friend. I lost my mother to breast cancer when I was 16 because no one ever questioned the doctor's decisions or took time to learn about the disease.

            When I was first diagnosed, I wanted to learn everything I could - good and bad about TC, and all the treatment options.

            So Quantum, continue to question and question and question.
            Right I/O 4/22/1988
            RPLND 6/20/1988
            Left I/O 9/17/2003

            Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.


            • #21
              I agree with Bill ....knowledge is power...when Chris was diagnosed...I was on the internet that first night til 3am...and then I found this website...and learned so much...that is how I knew about Sloan...and Dr. Sheinfeld...and I felt empowered when the Dr.'s here in our town knew less than me about TC cancer...when we went to Sloan, we felt as though we had found the right place...Mary Ellen


              • #22
                Dadmo - -

                That is tragic, but I think all too common. About a year ago, my cousin was diagnosed with throat cancer. He chose to follow the advice of his doctors, rather than to do any research himself (his wife did some, and he refused to heed what she had found). His surgery was botched, and there were major complications with his treatment - and he chose not go through the final rounds of chemo. So far, it looks like all is OK 1-year out, but I think his odds would have beem much better had they first consulted with the experts and verified his battle plan.

                I have told folks I know that one thing I have learned through this is that knowledge is a key in cancer treatment. There are so many kinds of cancers that oncologists may not see yours very often, so might just be referring to standard published treatment protocols, some of which may be a little out of date. Also, there are probably medical centers that specialize in most types of cancer and many will consult with you or yourr doctor for no charge over the phone or e-mail. Sometimes traveling there for a face to face consultation or even treatment will save your life.

                In the beginning I was just going along with what my doctors said. But I read Lance Armstrong's book, and saw how he approached it and it opened my eyes to the fact that he and his mom's research probably made all of the difference - they were not afraid of offending their doctors (and their doctors were professional enough to support their decisions). At that point I spent a lot of time on the computer, gathered my own information, and eventually found this Forum. So far, my TC journey has been fairly simple - but even so, my doctors consulted with the best. With the information I gathered, I understand the whats, whys and what ifs, so I am confident going forward. Yes, I still worry about the what ifs - but as I said in another thread I used to be a "can't do anything about it anyway, so why worry" kind of person. However with this, I find that understanding what might happen and knowing what you would do about it, greatly lessens the intensity of the worry.
                Right I/O 4/17/06, Seminoma Stage Ib
                RT (15 days) completed 6/1/06
                All clear as of 5/8/09


                • #23
                  Originally posted by QuantumSheep
                  ... in the case of recurrance, regardless of whether I opt for RT or surveillance, is carboplatin still an option? Or by that point is it a whole different ballgame?
                  I believe you thought if after initial treatement with Carboplatin you still can be cured in the case of recurrance ? From my research there is the same tratement like you are on surveillance, depends if lymph nodes are smaller you can get RT for recurrance or BEP.

                  I was treated with Carboplatin 2 years ago and it was very hard to explain anybody from USA that this could be good option. I'm happy that Dr. Einhorn send this mail to you, some kind of proof that this is something which can be consider for cure Seminoma in I. stage.
                  Seminoma I. stage ,May 2004,Si Deus pro nobis quis contra nos