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  • My Introduction

    Hi all. For my 40th birthday, I got testicular cancer. What'd you get?

    To start, I am an artist and designer from the Boston area, a father of one girl, a musician, sometimes a cyclist, sometimes a good cook, and occasionally a useful husband.

    In May 2007, I awoke one morning with intense pain, like I'd been kicked in the jewels. After a few weeks of hoping it would go away, then a 10-day round of Cipro antibiotic, I saw a urologist who found that I had developed a tumor in the right testicle. An orchiectomy followed a few weeks later. The biopsy showed this to be pure embryonal carcinoma.

    Since that time, I have seen a couple of oncologists in and around Boston and have had CT and PET scans which showed a couple of enlarged abdominal lymph nodes, and a few nodes too small to confirm. My tumor markers before and after surgery have never gone above normal. I'm scheduled to start 2-cycles of chemo [BEP] this Monday.

    I don't know if I made the right decision about who to be treated by. I tried to work out being treated at Dana-Farber, but I live just far enough away that commuting in myself would be a chore, and I have nobody I could ask to drive me every day. D-F wanted to do three cycles of chemo. I'm not sure why one doc would want three cycles and another would say two is enough. How can I know who is right?

    So I'm electing to be treated outside of the city with a smaller cancer center. The people there seem experienced, competent and friendly, but I'm just not feeling comfortable yet knowing that this legendary institution (D-F) has opened its doors to me. I know you can get chemo anywhere. The drugs are all the same no matter where you get them, or so I'm told. And I've been invited back to Dana Farber for restaging after the two cycles are complete.

    Am I wasting time worrying about this? My condition is nowhere near as serious as others with cancer who are perhaps better suited for a place like D-F. Also, is chemo the kind of thing I could potentially drive myself to?

    Thanks and best regards.
    Sfumato, the walking exclamation point
    Last edited by rallendorf; 09-06-07, 08:25 AM.

  • #2
    Welcome, and I don't think you're wasting your time. I think you should listen seriously to Dana-Farber's advice: 3xBEP.

    2xBEP would be adjuvant therapy, and it sounds as though you have confirmed metastasis. Check out the NCCN guidelines for more details about your treatment choices.

    Keep us posted.
    Last edited by Scott; 09-06-07, 09:15 AM.
    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
      Hello and welcome. You will find a fun and supportive family here on this forum.

      My thoughts are with you and your family.
      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

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      • #4
        Welcome Sfumato,

        Thanks for your detailed post. I actually work at Dana-Farber (though not as a clinician, but rather as a research scientist) and am a patient here as well. It is quite a coincidence that you talk about 2xBEP vs. 3xBEP. I was re-reading a post yesterday by one of the other members of the forum (TSX) who was also treated at DFCI. This is an excellent post on the logic of picking a course of treatment when given two options.

        His case, in principle, is different because he had stage IIB seminoma, but the premise in deciding his treatment was somewhat analogous. TSX had the option of radiation (at high doses) or chemo (3xBEP). The latter is not considered part of the typical NCCN Guidelines for treatment; however, being a Center of Excellence, DFCI pioneers novel and more accurate courses of treatment, and 3xBEP worked out great for him. Since you have some suspected retroperitoneal mets, 2xBEP might be too little chemo, and you need to hit this hard.

        Feel free to drop me a line of send me a PM if you want to discuss this further offline. As Scott said, though, you really should consider the advice from the docs at DFCI. They really know what they are doing.
        "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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        • #5
          Oh, and I like the eight-ball avatar.
          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


          Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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          • #6
            Originally posted by Sfumato
            Hi all. For my 40th birthday, I got testicular cancer. What'd you get?

            Drug store reading glasses.

            Welcome to the forum. I agree with taking DFCI's advice. You don't have to go for treatment, but perhaps your doc can consult with an expert at DF. Hit it hard and hit it fast, stupid cancer. Then go buy yourself what your REALLY wanted for your Birthday!
            Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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            • #7
              Originally posted by Sfumato
              The drugs are all the same no matter where you get them, or so I'm told.
              the drugs may be the same, but what about the dosages? It is really important that they diagnose the right amount of BEP, BUT NOT MORE THAN YOU ACTUALLY NEED.
              I think you should get to DF, and do the three cycles while being monitered by experts. And besides, FED can bring you lunch!
              Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
              Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

              Please see a physician for medical advice!

              My 2013 LiveSTRONG Site
              The 2013 Already Balders

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              • #8
                Thank you all for the replies. After reading some other posts, I'm starting to realize how incredibly uninformed I am about my situation. Regardless, I thought I would add my specs. Let me know if you think this timeline is ridiculously prolonged:

                06/20/07 - U/S findings: 1.8cm tumor in right testicle, pure embryonal nonseminoma
                06/27/07 - tumor marker tests: negative
                06/29/07 - radical orchiectomy
                07/28/07 - CT scan finding: two <2cm retroperitoneal nodes, and a 5mm node in the lingula of the left lung
                08/10/07 - PET scan confirms CT scan findings; two nodes 1cm, 1.4cm near the aorta.
                08/17/07 - First time I got an actual staging: Stage IIa. Discussion of treatment options; observation with chemo at a later time, surgery to remove nodes, or 2xBEP now.
                08/27/07 - meeting with Dana Farber oncologist. Treatment options: 3xBEP starting ASAP. Tumor markers taken again: still normal.
                09/04/07 - Pulminary function test: normal; test dose of Bleomycin: no side effects or reactions.
                09/06/07 - still undecided and anxious about starting chemo

                Am I leaving anything out?

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                • #9
                  Over two months from diagnosis with a stage II and no treatment is prolonged. It is very important that yor receive the right chemo ASAP. A center seeming competent is great, but KNOWING they are competent makes a difference to your life. Maybe you get get friends to rotate driving you in? Can you get the chemo as an inpatient?
                  Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                  • #10
                    Originally posted by Sfumato
                    08/10/07 - PET scan confirms CT scan findings; two nodes 1cm, 1.4cm near the aorta.
                    08/17/07 - First time I got an actual staging: Stage IIa. Discussion of treatment options; observation with chemo at a later time, surgery to remove nodes, or 2xBEP now.
                    Something's off here. Stage IIA non-seminoma calls for RPLND, 3xBEP, or 4xEP. Surveillance and 2xBEP should be off the table. It's time treatment started, Sfumato!
                    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


                    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                    Comment


                    • #11
                      Thank you Scott. I'm hoping to avoid the surgical route but it is good to hear confirmation that the 2 cycles was suspect. I just had a hard time qustioning it because the oncologist I started with has worked for maybe 30 years chiefing at hospitals right there alongside Dana Farber befre starting his own center. Maybe I'll get back on the phone with Dana Farber in the morning. This is just getting harder to figure out every day.

                      Karen, I wish it were that easy to ask a friend, but I'm a bit isolated and my closest family lives about 30 minutes away. Believe me, it sounded like a good idea when I moved here! ;-) The inpatient option was floated out there at one time but then I am faced with the challenge of getting my daughter to preschool. I feel a bit cornered...how do people make this stuff work?

                      Thanks for your thoughts.
                      Sfumato

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                      • #12
                        Originally posted by Sfumato
                        Maybe I'll get back on the phone with Dana Farber in the morning.
                        I believe the Dana-Farber recommendation for 3xBEP is the right one for you, and I'd get started on it as soon as you can. Hang in there.
                        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


                        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                        Comment


                        • #13
                          Hey Bro,
                          Now that I got your whole story, I can concur that it is imperative you get started with chemo ASAP (with 3xBEP). I sent you some info in a PM, but give me a ring tomorrow after 2 p.m. if you need/want to talk (I sent you those details in the PM, as well). And yes, as Joe said, I can bring you lunch: my lab is 4 floors below the infusion clinic .
                          Looking forward to hearing from you,
                          "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


                          • #14
                            I know it's hard to work past the logistics, but get the treatment plan in place and started. Being apart from family is hard at these times, and I wish I could offer a suggestion. You may need to rely on family to pitch in and help you with your daughter. Thirty minutes away isn't that far away in the sheme of things. You may feel uncomfortable asking for help, but your treatment is imperative. Please reach out to Fed...he'll help you out with the system at Dana and maybe sneak a beer in with your lunch!

                            Ask as many questins as you can come up with...we are here to help you every step of the way.
                            Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                            • #15
                              I have to say I'm overwhelmed by the support and kindness here. Call me a cynic, but it caught me off-guard! Many thanks for your attention and suggestions. I'm more certain now that I should call Dana Farber tomorrow.

                              Peace!
                              Sfumato.

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