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Doctors for surveillance in the DC/Baltimore area

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  • #1

    Doctors for surveillance in the DC/Baltimore area

    Hello everyone.. I was diagnosed with TC August 28 2007. Since then I have had my surgery and blood markers. AFP = 120 ng/ml HCG = 6.8 IU/L and my surgery to remove the right testicle. My CT scan showed no signs of spreading and my lymph nodes showed no swelling. They did find a small 7mm something on my right lobe of my liver, but the doctors think that it is nothing.

    I went to Duke because I heard that Dr. Moul was a "noted authority" on TC, but I have read on this forum that he doesn't even accept TC patience anymore. I ended up getting Dr. Brian Evans as my surgeon and Doctor. He has suggested that I go on a surveillance program rather than do the RPLND or Chemo. While I like Dr. Evans I have heard that many people that have gone to Duke have been told that they don't have much experience with TC surveillance.

    I am having my Pathology slides read for a second opinion in Indianapolis where I have heard they see a lot of TC patients.

    My question is Are there any specialist in the DC/Baltimore area that anyone can recommend for surveillance.

    Thanks for your time

    Charlie
    Atlanta, Ga
    Last edited by Physast; 09-15-07, 04:25 AM.
    08/28/07: Diagnosed Stage 1A nonseminoma (65% teratoma (mature and immature), 10% embyonal carcinoma, 25% yolk sac); AFP: 120 ng/ml HCG: 6.8 IU/L
    09/05/07: Right I/O; Clean CT
    09/13/07: AFP: 41 ng/ml HCG: 0.5 IU/L
    09/26/07: AFP: 12 ng/ml HCG: <2
    10/22/07: AFP: 2.2 ng/ml HCG: <2
    Surveillance All Clears: 11/09/07; 04/20/08;
    Tags: None
  • #2
    Charlie:
    Surveillance seems reasonable in your case. Great job getting a second opinion from Indy, they are without a doubt one of the world leaders when it comes to the treatment of tc.
    You shouldn't need to travel to be on surveillance. It's really nothing more then a schedule for follow up lab work. You should be able to get a schedule that's appropriate for you from the folks in Indy. Check out the NCCN guidelines for testicular cancer to give you an idea about how a serveillance schedule works. If I can get this stupid computer working right I'll attach a link to this post.
    OK so it wasn't the computers fault. Here's the link .
    Last edited by dadmo; 09-15-07, 07:21 AM.
    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
      Dadmo I do think I could find someone closer that could do the surveillance but I want someone that knows what to look for in terms of TC relapse. I am sure that has to be someone close to Johns Hopkins, but I might be wrong. I just think driving 4 hours once every two months for two years is going to make the whole surveillance more than a chore than it already seems it's going to be.

      Thanks for that link! My doctor actually printed that out for me and gave it to me to read on my last visit. According to this it also says that I am a good case for surveillance. Right now I am diagnosed with Stage 1A clinical and pathologically. The pathology was PT1 PNX PMX and the CT scan says no indication of spread all over it. I do however want to get that small 7mm something on my liver checked out. I mean Yeah it probably is nothing, but considering the circumstances it might be something.

      I am really glad this site is here. I have been hoping to get some feedback from other people. Thank you
      08/28/07: Diagnosed Stage 1A nonseminoma (65% teratoma (mature and immature), 10% embyonal carcinoma, 25% yolk sac); AFP: 120 ng/ml HCG: 6.8 IU/L
      09/05/07: Right I/O; Clean CT
      09/13/07: AFP: 41 ng/ml HCG: 0.5 IU/L
      09/26/07: AFP: 12 ng/ml HCG: <2
      10/22/07: AFP: 2.2 ng/ml HCG: <2
      Surveillance All Clears: 11/09/07; 04/20/08;

      Comment

      • #4
        Tumor Marker Updates

        I just received my blood work. My original AFP was 120 and my HCG was 6.8

        8 days after surgery my AFP has dropped to 41 and my HCG to .5

        I think this is good news!! The doctor has not told me if this is good or not, but at least they have dropped!
        08/28/07: Diagnosed Stage 1A nonseminoma (65% teratoma (mature and immature), 10% embyonal carcinoma, 25% yolk sac); AFP: 120 ng/ml HCG: 6.8 IU/L
        09/05/07: Right I/O; Clean CT
        09/13/07: AFP: 41 ng/ml HCG: 0.5 IU/L
        09/26/07: AFP: 12 ng/ml HCG: <2
        10/22/07: AFP: 2.2 ng/ml HCG: <2
        Surveillance All Clears: 11/09/07; 04/20/08;

        Comment

        • #5
          So far, so good! Your AFP should drop by half about every 5-7 days, so it's on track, and your hCG is already back in normal range, as it should be.
          Scott
          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

          • #6
            Welcome Charlie,

            It sounds like everything is on the right track. Keep being proactive and vigilant, and you will be fine. Surveillance is a perfectly good choice for you; just make sure you keep up with all your bloodwork (which is looking great thus far) and your scans. 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.

            Comment

            • #7
              Charlie:
              My concern now is that you may miss some follow-ups because of the inconvience. That will certainly never do. I don't have any recommendations about where to go but that is certainly a question you can ask your oncologist.
              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

              • #8
                Hi Charlie:

                I live about 20 minutes outside Baltimore, but am not aware of any experts, not of the caliber of the folks at Indiana or Sloan. I'm doing my surveillence with a "run of the mill" oncologist in Columbia, MD.

                There should be someone at either Hopkins or NIH who has some experience. Your current doc should be able to point you to somebody.

                If you come to Maryland and need anything, let me know.

                Best wishes.
                Fish
                TC1
                Right I/O 4/22/1988
                RPLND 6/20/1988
                TC2
                Left I/O 9/17/2003
                Surveillance

                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.

                Comment

                • #9
                  Hi Charlie. I live in NC about 20 min from Duke and we were not treated there due to their lack of experience with TC.

                  You would think Duke would be a great place to go, but actually there are much better options in this area. Of course the fact that you live in the DC/MD area I am sure you could find a closer option. please do let me know if you happen to need more docs in the NC area because I can put you in touch with some of the very best.
                  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

                  Comment

                  • #10
                    Thanks everyone for the comments.

                    What is crazy is I went to duke because I was told they were specialist in TC. Even when I got there the Doctor (DR. Evans) told me that they see two TC patients a month. This is opposite of what I have heard from others on this forum.

                    This scares me that so far things have not been done right. My surgery which I read takes on average 45 minutes only took me 20 minutes. Is this Normal? I am having the pathology sent to Indianapolis for a second opinion so that is taken care of.

                    Does anyone know if you can get CT scans, blood work and Chest x-rays from anywhere say Johns Hopkins then have that sent to a doctor in Indianapolis for review. Something like a long distance surveillance.

                    I can't believe that Duke was actually not a good choice.... And I thought I was doing something good, instead of going to Emory here in Atlanta where I am at now until I start my Job in DC.
                    08/28/07: Diagnosed Stage 1A nonseminoma (65% teratoma (mature and immature), 10% embyonal carcinoma, 25% yolk sac); AFP: 120 ng/ml HCG: 6.8 IU/L
                    09/05/07: Right I/O; Clean CT
                    09/13/07: AFP: 41 ng/ml HCG: 0.5 IU/L
                    09/26/07: AFP: 12 ng/ml HCG: <2
                    10/22/07: AFP: 2.2 ng/ml HCG: <2
                    Surveillance All Clears: 11/09/07; 04/20/08;

                    Comment

                    • #11
                      hi charlie

                      welcome to the forum. i kind of do a long distance surveillance with dr einhorn in indy. what ever he needs my oncolgist will get it to him and follow the advice given. i like my onc but you have to find the best and i believe i have in dr. e and dr. foster (surgeon) but im only 4 1/2-5 hrs away. might even consider sloan if you are in dc area....might be a thought.
                      good luck and keep us posted

                      kendall
                      severe back pain ( found to be tumor rpgct) no pain/irregularities with twins at all
                      diagnosed 11-15-06 stage 3c mets to lungs/shortness of breath, choriocarcinoma, hcg 212,000
                      11-16-06 1st of 4 rnds. in patient bep
                      2-07 1st of 3 rnds. in patient salvage tip
                      met dr. einhorn 4-17-07 ultra-sound (1st one)
                      5-10-07 left i/o (immature teratoma)
                      7-12-07 rplnd (dr.foster)
                      8-16-07 all-clear and in surveillance mode
                      started TRT...androgel 12-5-08
                      fight the good fight...you can win

                      Comment

                      • #12
                        Kendall makes a good point about Sloan. By train New York is about a 3 hour trip from Union Station in DC. Not too bad if you leave the driving to Amtrak.
                        Fish
                        TC1
                        Right I/O 4/22/1988
                        RPLND 6/20/1988
                        TC2
                        Left I/O 9/17/2003
                        Surveillance

                        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.

                        Comment

                        • #13
                          Originally posted by k.strehle
                          hi charlie

                          might even consider sloan if you are in dc area....might be a thought.

                          kendall

                          Kendall this is sounding promising! I looked at the web page and they seem to be very up on testicular cancer. This being only 3 - 4 hours away from DC could be a realistic place to do my surveillance. I still would like to learn more about doing a long distance surveillance with someone at Indianapolis because I have always heard they are the best. It's so tough because I want the best.. This is all overwhelming.
                          08/28/07: Diagnosed Stage 1A nonseminoma (65% teratoma (mature and immature), 10% embyonal carcinoma, 25% yolk sac); AFP: 120 ng/ml HCG: 6.8 IU/L
                          09/05/07: Right I/O; Clean CT
                          09/13/07: AFP: 41 ng/ml HCG: 0.5 IU/L
                          09/26/07: AFP: 12 ng/ml HCG: <2
                          10/22/07: AFP: 2.2 ng/ml HCG: <2
                          Surveillance All Clears: 11/09/07; 04/20/08;

                          Comment

                          • #14
                            You can't get much better care than Sloan...that's for sure. If we could have made the commute we would have picked them. We did select them for my husband's RPLND and could not have been happier.

                            If you need a good choice in the Raleigh area....I can get you the number and names for the REX cancer center. They are head and shoulders above Duke in regards to TC.

                            Let me know.
                            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

                            Comment

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