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  • #16
    Recommended Surgeon?

    It looks like my son is going need a Post-Chemo RPLND. Can anyone recommend a surgeon with expertise in the Mpls/St.Paul area? How about the Mayo? Or would the best thing to do is to go to Indianapolis...

    Comment


    • #17
      Originally posted by als920 View Post
      The closest center I have found in my area is the University of Chicago Medical Center.
      Has any one else had RPLND done in the upper midwest (MN, WI, IL) ?
      My husband did. Dr. Steinberg was his surgeon and he was fantastic. The residents there were amazing too. Dr. Stadler was his oncologist and he was fantastic too.

      I highly recommended U of C, and my husband will as well.

      Comment


      • #18
        Search for Statistics

        Hi Scott et. al.,

        I'm the sister of a TC-fighter (Stage III, 4XBEP, Right I/O on Monday) whose marker levels have been doing a good job of halving on time. My brother just finished his 3rd cycle of EP, with 6 doses of bleo and 5 days of EP left.

        On the unanimous advice of people here and on TC-NET, I really want to take my brother to a Center of Excellence for his RPLND (assuming all goes well, that chemo works, and that his tumors don't disappear enough for him to need it), preferably IU. My family is nervous and not very supportive of this; they're worried about money, difficult travel, and sheer "differentness" of going somewhere else. I'm not disappointed with my brother's care (we're at Parkland Memorial in Dallas), but I want this complicated surgery to be done by the world's best!

        All that to ask: Are there statistics available for success rates by hospital? Or even by doctor? They want to see numbers, not dozens of anecdotes (heh, which already won me over). Are hospitals required to publish such data? Or have there been meta-analyses of TC data published?

        Pub-Med hasn't shown a lot of promise.

        If the answer to my questions is "no," then I ask for advice: What should I say to convince them?

        Sad to have to make your acquaintance,
        But appreciative in advance,
        Summer

        Comment


        • #19
          Summer,
          I don't know if there are published studies, but I know Dr. Foster @ IU perform thousands of these surgeries a year. RPLND's are basically all he does. I would ask how many nerve sparing RPLND's your local surgoen has done in the past year. That would be evidence enough.

          Check out this paper from Dr. Foster

          I would contact Simon Cancer Center @ IU and ask to speak to a patient counselor. See if they have any #'s published that they could share with you in writing.

          IU is amazing, they offer plenty of assistance dealing with insurance and recommending discounted places to stay for him and his family.

          Good luck.

          John
          Last edited by TC Destroyer; 03-16-11, 08:56 AM. Reason: Added link
          Diagnosed 4/17/08
          Right orchiectomy 4/18/08
          Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
          4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
          HCG down to 7.2 10/28/08
          HCG back up to 198 12/29/08
          1 X PVB 1/2/09-1/6/09
          2 X HDC w/ stem cell rescue 2/4/09-3/14/09
          Follow-up with Dr. Einhorn 4/22/09
          HCG 1.2
          3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

          http://www.caringbridge.org/visit/johncovell

          Comment


          • #20
            Dr. Paul Corn at MD Anderson in Houston, TX has been amazing! I highly recommend the MD Anderson team.
            Wife of TC x 2 Warrior.

            05/2010 Left TC diagnosis; 95% seminoma, 5% Embryonal - Treated w left orchiectomy and surveillance.

            11/2010 Right TC diagnosis; 90% Embryonal, 10% seminoma, 3 enlarged lymph nodes Treated w right orchiectomy and 3 x BEP.

            3 x BEP completed February 2011.

            Currently undergoing surveillance.

            Comment


            • #21
              Is there a CofE in Queensland Australia

              I was looking for something in my Local State - Queensland or City Brisbane

              Any suggestions?
              Ray

              Summary

              1st March 2011
              AFP 1939
              hCG 7.6

              17th March 2011
              Right Orchidectomey
              Testis (121)g Mixed Germ Cell Tumour - 50mm - Classical Seminoma 80% adn Yolk Sac Tumour 20%.
              No Lymphovascular Space Invasion
              Confined to the Testis
              Clear Margins

              21st March 2011
              AFP 650
              hCG <1.2

              August 2011
              AFP 3.2
              hCG <1.2
              Only Lymph node reduced to 11mm now
              No Cheno - test every 2 months form now

              Comment


              • #22
                Originally posted by mantaray View Post
                I was looking for something in my Local State - Queensland or City Brisbane

                Any suggestions?
                Ray, hopefully someone will be able to recommend a TC expert in Qld for you but there doesn't seem to be one here in WA. This list might be of some use if you considered travelling:

                http://tcrc.acor.org/experts.html#australia

                Dr Einhorn (world renowned TC guru who developed the BEP protocol) suggested Dr Guy Toner to me (in Melbourne) as an oncologist who had expertise in testicular cancer.
                Son (James, age 17):
                12/1/10 - TC confirmed
                HCG 80, AFP 156
                12/3/10 - Left I/O
                70% Mature teratoma, 30% EC/yolk sac. 41 x 37mm. Multiple foci of vascular invasion, negative spermatic cord margins.
                1/12/11 - HCG 7, AFP 4.6. Surveillance.
                2/7/11 - Tumour markers elevated - HCG 18, AFP 14.5
                2/15/11 - PET and CT scans show at least 4 lymph nodes affected (abdomen and base of neck).
                3xBEP completed April.
                Celebrated 18th birthday.
                6/30/11 - All Clear!

                Comment


                • #23
                  Virginia Mason in Seattle has an excellent TC team, and the patient care after my RPLND was great. Dr. Nichols is up there, and Dr. Chris Porter did my nerve-sparing bilateral RPLND. Dr. Porter has a great bedside manner. I have to admit that I feel better after this RPLND than after Dr. Foster did the L-template in 2005.
                  Left I/O 5/2004, noticed testicular pain and mass and elevated b-hcg
                  L-template RPLND 9/2005 by Foster, due to routine C/T showing NSGCT mass, but no elevated markers
                  2 Rounds of Adjuvant Carboplatin
                  Elevated AFP (3100) 3/2011 with a pelvic mass
                  Bilateral RPLND 5/2011 and single site mass (predominantly teratoma with some yolk sac) with AFP at 900 at discharge
                  Now, chemo or surveil? BEP or VIP if I do

                  Comment


                  • #24
                    Centers of excellence

                    Originally posted by Scott View Post
                    One of the most frequently asked questions is, "How do I contact a center of expertise for another opinion or treatment?"

                    Contact information for two top centers is at these links.The Testicular Cancer Resource Center website lists other experts around the world at this link.
                    We live in NYC and would like to have team Bosl/Sheinfeld take care of my boyfriend but Sloan will not accept his managed medicaid. What other area hospitals can he go to or how do ws get HIP to pay?
                    Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.

                    Comment


                    • #25
                      Hi Lovemyman,

                      I wish I had some answers for you. Our new mod, Kat may be able to help you. She's really good with insurance/non insurance issues.

                      Mary Ann
                      CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

                      Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience

                      Comment


                      • #26
                        Hey lovemyman---
                        Happy to help you figure this out. First off, I need to know which form of HIP you have, and then go from there----Is it HIP-Medicaid, or one of the other (million) variations? Usually, even with HIP Medicaid, as long as you can convince your PCP to give you the referral to that specialist, saying it's medically necessary for you to see that particular specialist, you can beg and plead and they'll do it. Let me know which variation of HIP you have, and I'll get going on it....
                        Best wishes,
                        Kat
                        sigpic_______________________________________________
                        Caregiver
                        DX 5/15/09
                        Left orchiectomy 5/22/09
                        60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
                        CTs clear, X-rays clear, blood markers normal
                        L-RPLND 7/14/09, San Antonio
                        3 nodes positive, 100% embryonal, N1 (PS-IIA)
                        2 rounds BEP August 24, 2009, Austin
                        Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
                        All clear 10/01/10

                        Comment


                        • #27
                          Don't take No for an answer. All med insurance plans have a process for appealing out-of-network coverage.

                          If you still end up being declined, NYCRuss had the same problem and had to go to Cornell. His surgeon trained at MSKCC. If I had time, I would wade through his posts to see if he mentioned the doctor's name. Russ's home page is here http://www.tc-cancer.com/forum/member.php?u=7806 . We haven't heard from him lately but the last time he checked in he was doing fine, with his particular brand of city lawyer humor intact.

                          Good luck,
                          Paul
                          "Statistics are human beings with the tears wiped off" - Paul Brodeur
                          Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear August2013 (CT scan, Markers)

                          Comment


                          • #28
                            The main center of expertise here in Italy is the following, not the one on the first post' link:

                            Istituto Nazionale Tumori, Via Venezian 1, 20133 Milano
                            - early Apr/11: something is "wrong" in my righty
                            - 16/Apr/11: ultrasound find a mass in it
                            - 27/Apr/11: right I/O
                            - 29/Apr/11: stadiation CT scan shows "all clear"
                            - May/11: pathology: 1 cm Seminoma (90% necrotic), no RT/LV invasion
                            - Surveillance....
                            - March/13: relapse - para aortic node 1.7 cm, waiting for treatment...

                            Comment


                            • #29
                              Boca Raton Regional Hospital, Florida

                              IF you are in south florida the newly built Lynn cancer center is an AMAZING facility, they treat all kinds of cancer my doctor is from MSKCC and is very good in my opinion. The cancer center is all state of the art with all the scanning <CT, PET, MRI etc.> and radiation therapy on the first floor, 11 doctors see patients on the second floor along with the lab and infusion center. blood work takes 5-10 minutes to get the results! and they have a multimodialty center where all the doctors talk about the cases and whatever else they do..

                              It is a TOP NOTCH facility google "Lynn cancer center at Boca Raton Regional Hospital".
                              Last edited by SouthFlorida; 02-12-12, 02:39 AM.
                              10-14-11 - Right I/O
                              Pathology report - 90% EC, 10% Chorlocarcinoma with VI
                              Completed 4 rounds EP Jan 2012
                              CT showed 3 small under 1cm nodes in lungs, and some lymph nodes biggest one 2cm.

                              Comment


                              • #30
                                i wish i could ,,, iam in Saudi Arabia
                                09/04/2009: Diagnosed left TC AFP 1260 BCG 365
                                19/04/2009: Left O/I tumor markers normal,CT abd chest clear,HISTPATH:Seminoma (mistaken),surveillance 1 year
                                05/07/2011: Back and abd pain.U/S:Hard mass
                                CT:RP Mass 12x11x9 cm,I collected the slides from the 1st Lab to Hospital,Histopath:emryonal carcinoma -germ cell
                                15/07/2011: 3xBEP and 3xEP chemo
                                15/12/2011: Back Pain.MRI shows Lesion Osteolytic in L1 Vrtbrl body
                                03/01/2012: Zometa for bone care Dr No sure Bone metastasis
                                27/02/2012: AFP 5.8 BCG 1,PET scan shows shrinkge mass to be 6x6x4 cm,L1 shows stable Waiting RPLND Uro-Oncolgst

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