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Really Disappointed with Oncologist

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  • Really Disappointed with Oncologist


    Previously, I posted that I had stageI seminoma (good: margins, no LV invasion, no epididymal invasion, small tumor (1.5 cm), over 35 (I'm 38)), also, I was told I had normal tumor markers, CXR and AB/Pelv CT. I thought it made me a good candidate for surveillance. So did my urologist, and accordingly, arranged for a CAT scan in 4 months. I did ask to talk to an onco, and he referred me to one in his department. I wasn't scheduled to see her until yesterday, one full month after my orchiectomy.

    I was slightly annoyed about the onco he referred me to because, A) She was a D.O. not that I have anything against D.O.s, but I really have never had one, and B) She has no publications in the area, while another onco in his department cites testicular cancer and kidney stone disease as his specialties (acutally, he's a surgical oncologist). He had also trained at Sloan Kettering during his fellowship. Nevertheless:

    Yesterday I went there in relatively good spirits. It was completely different then I had thought though. I thought the onco and I would sit in an office and discuss my case. Instead, I was examined in a procedure room by a oncology fellow. He was friendly and discussed my case a bit, and said it was incredible that it was caught so early, and that I shouldn't worry about the slight lymphadenopathy too much. That was now news to me.

    Anyway, one full hour after my scheduled appointment I got to talk to the onco. She went on about how she was not comfortable recommending surveillance because she would like to see a 'normal' CT to make that recommendation. In fact, she wants to rule out metastases and wants me to have a chest CT. She recommends radiation, but I told her I really want surveillance but I will definitely consider radiation. At this point I send the fellow to make copies of my medical records so that I have them. In the meantime, we schedule a chest CT, and a Rad Onc consultation and arrange for blood to be drawn. While I'm waiting for the phlebotomist, I review my records, including the CT. Nowhere does it say that there is lymphadenopathy. Some LNs were seen but "within normal size parameters". It the report it also says "all retriperitoneal, pelvic, and inguinal nodes appear normal".

    So I confront the onco with this info, and she starts sidestepping, explaining that they noted lymph nodes on the CT and it worries her, and who told me I had lymphadenopathy anyway, and that she wants to take a look at the scans personally...

    ...and that was another thing that bothered me, she seemed completely unprepared to meet with me... she had not reviewed my pathology slides personally, she could not answer some questions that I had about the path report, and what I think happened is that she was simply quickly briefed by the oncology fellow and just parroted what he said about the lymphadenopathy.

    Needless to say, I'm going to fire her. I made an appointment with the Uro for tomorrow (before my possibly unescessary Chest CT. I plan to simply tell him that I am uncomfortable with the onco he referred me to... nothing bad, just not comfortable.

    I also called Dr. Sheinfeld's office at Sloan. They want to see my reports by tomorrow, so that I may get in by next Thursday. I really want to talk to someone who knows TC.

    Any comments or advice? Should I bail on the Chest CT? Should I fire this D.O.? Is she right about the LNs not being usually commented on?

    I'm not sure about the CT, but I will likely keep my appointment w/the Rad Onc.

    Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

  • #2
    If I were in your shoes, I would send everything to Sloan and talk to them ASAP. A DO or a PA is just fine for a UTI, but I would not go to one for Cancer. On my husband's first CT they "noted" a few lymph nodesas <1cm. I poked around the literature and found that <11mm is in the normal range. Our rad onc said paraaortic lymph nodes aren't normally be seen on a CT scan, so in that instance your DO's comments seem correct. It's like "gee, we see them, but don't knoe if it means anything". HOWEVER, Ray's CT scan was <48hrs after his I/O, so they thought it could just be a localized post-surgical reaction. 6 months later they they are unchanged. I hope to post the same on Nov 26! Sloan showed no concern with the LN. If you end up with RT you need to start SOON. My 2 cents is, if you can get the chest CT and results prior to Sloan, go for it. Fire the DO. When you go to Sloan you will have an underling come in and examine you , take a history etc...then Sheinfeld comes in. Grill him. As a scientist you can ask the right questions. Again, I am in your general area in NJ and if I can steer you to the rad onc and med onc Ray uses, even for a consult, let me know. Good luck!!!!
    Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


    • #3
      Thanks Karen,

      I will definitely do the're comments gave me a chuckle . Anyway, tomorrow I'll meet with the uro and discuss the LNs, and I'll tell him I'm jumping ship...

      By the way, I did my CT scan BEFORE the I/O, but I was also suffering from severe kidney stones.

      Kind Regards,


      PS PM me anytime!
      Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.


      • #4

        Has anyone heard of a Dr. David Nanus at New York Presbyterian? Also what is a D.O?


        • #5
          Originally posted by ssavino
          ...what is a D.O.?
          A Doctor of Osteopathy. See this link.
          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!


          • #6
            do what you are doing, get an opinion from an expert...

            I had complete confidence in my urologist and oncologist and still flew to indy to see einhorn...who knew my oncologist at U of miami and said I would be in great hands with him...he confirmed everything though.

            I got on the plane from indy feeling so least I knew where I was in the process/staging etc.

            franly, reading some of the posts here and some of the treatments and recommendations people get really aggravates me, because it did not take me long to learn quite a bit about testicular cancer and it is clear quite a few docs out there really have not taken the time to get educated on the subject, or their egos are too big to say you really need to see an expert in the area.

            This site is invaluable for helping to guide people through the education are making the right decisions and that is 90% of it.
            - lump first noticed 11/20/2005
            - I/O right Dec 8, 2005
            - 95% embryonal / 5% seminoma
            - normal markers PRE surgery
            - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
            - Stage I diagnosis
            - surveillance
            - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
            - 3BEP began feb 20, 2006
            - finished 3 BEP, last bleo, april 17, 2006
            - CT scan, blood markers, chest..all clear
            - back on surveillance