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  • #31
    How about Orange County, Los Angeles, or any Southern California?
    3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

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    • #32
      Hello Friends,

      by any chance any body have idea of good specialist in India..?
      12\2010 : Diagnosed with NSGCT Stage III
      12\2010: Left I/O
      01\2011: 4 Cycles of BEP (all cleared)
      04\2012: AFP Rising.. 6 Cycles of TIP.
      06\2013: AFP at 18.6 ng\ml..
      08\2015: AFP at 15.0. 6 months regular follow ups.

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      • #33
        Dr. Allaf, Johns Hopkins

        I would add Dr. Mohammed Allaf at Johns Hopkins Brady Urological Institute. Below is a link to his bio. He is an oncologist, urologist and the director of minimally invasive and robotic surgery. He does loads of L-RPLND a year and is VERY up on all the research. We were very impressed when we met him and feel that we can trust him. He took time with us and answered all of our questions.

        http://urology.jhu.edu/mohamadallaf/index.php
        Toni-wife of Jim, age 43 at DX
        8/15/13 Left I/O, CT scans clear
        8/23/13 Path#1 -U of Rochester: 2cm tumor - 80% EC, 20% Seminoma, No LVI
        9/9/13 Path #2 - IU - 35%EC, 50% Yolk Sac, 10% Seminoma, 5% Chorio, a Focus of LVI
        9/13/13 Path #3 - Johns Hopkins - 40% EC, 45% Yolk Sac, 10% Seminoma, 5% Chorio, NO LVI
        9/30/13 Robotic RPLND at Johns Hopkins with Dr. Allaf - 32 nodes removed. ALL CLEAR!
        10/23/14 Lastest round of bloodwork- ALL CLEAR still...

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        • #34
          Dr. Sanjeev Kaul - Michigan - Robotic RPLND

          http://www.urologist.org/AboutUs/Our...njeev-M-D.aspx

          Kaul, Sanjeev M.D.
          31157 Woodward Ave.
          Royal Oak, MI 48073

          Tel: 248.336.0123
          Fax: 248.336.3390

          He is highly recommended by his peers. I cannot say enough about how good my experience was with Dr. Kaul.....

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          • #35
            Hi all.concerning cyprus you can come in contact with doc Demetriou from ipokrateio hospital(he has the only da vinci in the country)I also heard about another doc that does lap surgery with his ex visiting teacher from uk in limassol ygeia clinic.in greece you could check diavalkaniko for mr andreou or larisa for the open procedure(a us visiting doctor helps there).my personal choice was royal marsden uk.from what uve heard you can also check athens metropolitan hospital where the lead urology surgeon perfoms this type of surgeriea.generally though people seem to avoid hqving the surgery andprefer the chemo way to try to fix things
            -02/2015 ct scan clear now on surveillance
            -January 2015 end of chemo
            -01-12-2014 2xBep start
            -biopsy said classic seminoma in 2/22 nodes
            -10-2014 lap rplnd
            -06-2014 lymph node increased to 12 mm
            -01-2014 10mm lymph node in the paraortic left region
            -2 years surveillance clear with ct scans and blood work
            -2 biopsies performed(1st said teratoma, embryonal and seminoma element, 2nd said teratoma and seminoma)
            -12-2011 cancer diagnozed NSGCT left orchiectomy

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            • #36
              Princess Margaret Cancer Center for anyone in Toronto. Even Ontario.

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              • #37
                Hey everyone,

                I am just starting my journey down this road. I am a week and a half or of a radical left I/O. I had this procedure at Washington Adventist in Takoma Park MD.

                The pathology report showed Stage I seminoma with no indication of it spreading. Currently my doctor has scheduled for follow-up blood work in two and a half weeks and we go from there.

                Does anyone have experience with Doctors in the DC/Baltimore area? Is there a center of excellence in this area?

                Thanks,
                Max

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                • #38
                  Sorry to welcome you here. Responding so someone who lives in DC/Baltimore area might chime in, however I would definetly see if your insurance will cover a visit to James Buchanan Brady Urological Institute especially with Dr. Phillip M. Pierorazio he is an EXPERT!!

                  http://urology.jhu.edu/testis/cancer.php
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                  2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                  Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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                  • #39
                    Originally posted by Mwallach View Post
                    Hey everyone,

                    I am just starting my journey down this road. I am a week and a half or of a radical left I/O. I had this procedure at Washington Adventist in Takoma Park MD.

                    The pathology report showed Stage I seminoma with no indication of it spreading. Currently my doctor has scheduled for follow-up blood work in two and a half weeks and we go from there.

                    Does anyone have experience with Doctors in the DC/Baltimore area? Is there a center of excellence in this area?

                    Thanks,
                    Max

                    Hi Max,

                    I responded to your other post in more detail.

                    If it were me and I wanted further consultation on treatment options, I would see Dr. Pierorazio at Johns Hopkins in Baltimore http://urology.jhu.edu/phillippierorazio/ (I personally know him and he is a great guy and incredibly knowledgable about testis cancer) another local option may be Dr. Ross Krasnow https://www.medstarhealth.org/doctor/dr-ross-e-krasnow-md/#q={} (I do not personally know him but he is new to DC and was fellowship trained in urologic oncology in Boston).

                    Mike
                    Oct. 2005 felt lump but waited over 7 months.
                    06.15.06 "You have Cancer"
                    06.26.06 Left I/O
                    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                    06.30.06 It's Official - Stage I Seminoma
                    Surveillance...
                    Founded the Testicular Cancer Society
                    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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                    • #40
                      Hello, I am new to this forum. My husband is a Stage IIIB nonseminoma survivor, at exactly 2 years post-chemo and I/O. We are in Houston, so his treatment and care team are at MD Anderson. He never got an RPLND - his team decided to pursue surveillance. I'm surprised (and maybe a bit concerned) that MD Anderson is not really mentioned here except once in 2011 and is not on the world-wide list. Has anyone done an RPLND at MDA?

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                      • #41
                        Well everyone is different but I'll give you my 2 cents. I was diagnosed with a testicular germ cell cancer. they cut out the affected testical said the margins were clear did aggressive surveillance and a year later I ended up with metastatic lung cancer. My 2 cents is RPLND might or might not be necessary as mine wasn't but Chemo is 100% a must. If I would have gotten 9 weeks of chemo after the testical was removed I would not have ended up with lung cancer. As a side not no lymph nodes were showing signs of infection and I didn't have an RPLND nor have I to this day over 1 year clear after chemo I had the testicular removed in 2015 had chemo on 2016

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