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  • Doctors, Referrals, Consultations?

    First off, I just wanted to say how thankful I am such a community exists. I have read many posts since my diagnosis a few weeks back.
    I've been working with a local urologists, who has been great so far, but since this is so rare, I feel that I should go to a doctor who sees more cases, especially when deciding treatment options.

    I live in Pennsylvania, so the closest "expert" is Dr. Vaughn at UPenn Abramson.

    My local doctor said just to bring who i'd like a referral too at my follow-up and he'd have his office take care of it,but i'm concerned about getting an appointment. How long does it take to see one of the doctors off of the "experts" list? I'm afraid of having to wait like 6 months, all while having cancer in me. Is this common or do this cases move quicker if being referred, after diagnosis, tests, ect.? I'm worried about waiting for months while cancer is invading me to see an expert.

    Second question: how do I get my doctor to "consult" with another doctor? I have read on the forum about others getting their doctors to consult Dr. Einhorn or Dr.Sheifield, or even getting to do a phone consultation-- how do I go about this?

    TLDR:
    1. How long does it take to get into an "expert" if diagnosed, with tests, and referred?
    2. How do I get either a doctor-to-doctor or phone consultation for Dr. Einhorn's opinion?
    Last edited by cartmanman717; 07-18-16, 03:30 PM. Reason: added tags

  • #2
    My experience has been that if the situation warrants, the experts will see you right away. Sheinfeld booked me in his next available appointment, which was less than a week from diagnosis. The experts recognize better than anyone that this is a fast spreading disease that is treatable if dealt with early. Dr. Vaughn is excellent. What is your diagnosis? If you are early stage, without highly unusual factors, I would not be too worried at this point with getting in contact with Dr. Einhorn.

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    • #3
      I see Dr. Vaughn. He got me in within a week of my contacting him. He is great and will tell you waht each center of excellence would do given your particular situation. I just finished BEPx3 and the overall experience, while very difficult, was made that much easier by a great facility and team. Hope that helps.
      3/2016 -3cm lump-Left I/O performed -Pathology EC with some potential YS - Markers - AFP 42 & BHCG 37 - 2 enlarged lymphnodes
      4/20/16 - Met with Dr. Vaughn at UPenn. "Good Risk" Stage II
      4/18/16 - Started BEP X 3 - Markers normalized after 2nd round
      6/17/16 finished BEP X 3
      7/8/16 CT scan shows all lymph nodes shrunk below 1cm.. Surveillance!

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      • #4
        @Jfert and @EJH2016

        I called up penn medicine today and have an appointment scheduled for the first week of august, but doctor Vaughn actually wants to see me sooner. I had my CT scans today, so we're just waiting for the results and my follow-up with my urologist on Monday-- My case nurse said i'll likely see him next week sometime.

        So far, sparing the CT results, I think i'm 1B. My pathology came back stage 2 (lymph vascular invasion, but no spermic cord invasion) with the tumor being non-seminomia (a 70/10/10/10 split, mostly embryonal). My tumor marks are down to normal from pre-op values, as well. So, just need to see the CT results. But, from the resources online, I think i'm stage 1b.

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        • #5
          Originally posted by cartmanman717 View Post
          My pathology came back stage 2 (lymph vascular invasion, but no spermic cord invasion) with the tumor being non-seminomia (a 70/10/10/10 split, mostly embryonal). My tumor marks are down to normal from pre-op values, as well. So, just need to see the CT results. But, from the resources online, I think i'm stage 1b.
          It is impossible to Dx a stage before the CT results are in. In a oversimplified nutshell, if it's confined to the testicle, stage 1, if it's spread to the retroperitunium, stage 2, if it's gone farther (lungs, brain) stage 3 The CT is a critical piece, nothing other than a CT can stage you (except an RPLND surgery).

          If you could post your exact path report wording we might be able to offer more insight as to what you likely are facing.

          For basic cases, (stage 1 & most stage 2) the treatment protocols are very clear & your doc just needs to follow those to get you cured. There is little benefit from seeking an expert, IMHO.You will get the same treatment from your current doc as the expert in most cases.I think the biggest difference is it seems to me you are more likely to be over treated by an inexperienced doc, but the NCCN guidelines should be followed & insisting on following those should take care of that. My oncologist actually printed out the flowcharts & walked me through them to show me why I needed chemo and I was certainly not at a center of excellence, just a local cancer doc in a fairly rural area.

          With currant treatments, I personally would NOT seek out an expert unless my oncologist wasn't following the guidelines. It doesn't sound like you've even been referred to an onc yet, your doc should have set that up by now, ask him about that.Based on what you have posted so far, any onc that follows NCCN will get you cured.
          Dave
          Last edited by Davepet; 07-20-16, 03:24 AM.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

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          • #6
            Dave is right, If your bloodwork, CT, and orchiectomy pathology fit in the NCCN stage 1 or 2 guidelines there isn't a compelling reason to see an expert. The NCCN guidelines have been developed and tweaked by the experts themselves for regular oncologists to follow. So as long as your doc is following the tests, timelines, and treatments indicated you should be good to go. No need to tie up the experts, let them focus on their advanced research and treatment of extraordinary cases.
            6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
            6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
            7/7/15: bHCG 56, AFP 42, LDH 322
            7/13/15: begin 4xEP, end 9/18/15
            10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
            10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
            4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
            4/20/16: RPLND @ IU - teratoma only!
            10/22/19: all clears up to this date!

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