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Do I need an Expert? Live in NJ

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  • Do I need an Expert? Live in NJ


    I was diagnosed with Stage I Seminoma last month at the Cancer Institute of New Jersey at UMDNJ. Uro recommended surveillance...meeting with Onco is next week. Sloan Kettering is nearby, and I feel that I would be foolish not to go to them for second opinion. I also feel that if I get a recurrance it upstaged to Stage II I would definitely opt to get treated there. It's just that if I'm on surveillance, I'd rather not have to go into the city to do my Cat Scans. I guess they can be done in NJ and sent to Sloan.

    Has anyone else here been treated for TC at CINJ at UMDNJ?


    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
    Hi, we aren't being treated at Sloan or in NJ, but we are being treated in Indiana under Dr. Einhorn. All our tests are taken locally in Vermont, and all results are sent to him for analysis and recommendations. So I'm sure Sloan would do the same thing.

    I think second opinions are always good!

    Good Luck
    Lori and Jon
    Diagnosed 5/22/2006
    I/O 5/26/2006, Stage 3, Good
    Teratoma (Majority), Seminoma (10%), Yolk Sac
    3xEP then determined not working
    HDC w/stem cell transplant 8/16/06 to 9/25/06
    Chest and Neck surgery 10/9/06 - immature teratoma
    RPLND 11/16/06 - immature Teratoma
    2/29/2008 - markers continue to be normal!
    9/16/2008 - released from Dr. Einhorn's care


    • #3
      We're in NJ and my husband got chemo at St Barnabas with Dr. Leitner. We went to Dr Bosl at Sloan first, and when we expressed a preference for doing chemo closer to home, Dr. Bosl recommended Dr Leitner, who did his fellowship with Bosl. For followups, my husband goes to Dr Leitner, who I adore. I'm not really answering your question, but I wanted to let you know about a doc in NJ who has a lot of testicular cancer experience.


      • #4
        We're going to the Cancer Center at Overlook Hospital, which is affiliated with CINJ. We didn't hesitate to go to Sloan for a's so close it's hard to find a reason not to. We FAXed over all the reports, the path slides were sent directly from Overlook to Sloan and back again, and we carried the CT and X-rays with us and brought them right back. Sheinfeld was reassuring and now at least Ray has a chart over there and his handy dandy patient ID card in case, heaven forbid, he needs to go back.
        We were really happy with the onc radiologist at Overlook as well. PM me if you want any details, being a fellow NJ researcher (although I suspect we are rivals!!)
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


        • #5
          mk6439 made a good point. Especially being in the metro NY area there are lots of docs that trained at Sloan. Ray's oncologist and urologist trained under Seinfeld as well. You really are so close that the peace of mind is worth the trip...even if they confirm what you already know. Just my 2 cents with 7% tax.
          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


          • #6
            I'm also in NJ and we took our son to Sloan for a consult but had all chemo and followups done locally.
            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.


            • #7
              I sent my slides to them if that help you //
              Just to be sure I sent my slides to them. Out of pocket was 300.00 bucks if they need to be re stained add 100.00

              The path report dictates you protocal that is why I did it.

              also TCRC web site states:

              Why should you choose surveillance?

              You want to avoid any unnecessary radiation. Some studies have shown that this type of radiation will increase your risk of getting another cancer by as much as 4%. You feel that you'd rather not get the treatment unless you know you actually need it.
              Your odds of recurrence are lower than normal (For example, the tumor was smaller than 4cm, you are more than 35 years old, and the tumor showed no evidence of vascular invasion), and you do not want to put yourself through any further treatment without knowing that it is actually necessary.
              You would rather think that you have been cured than know you have been radiated.
              You can live with the idea that some cancer might still be in there, but radiation, and maybe chemotherapy will act as your safety net if it ever comes back.
              You believe that you could stick to the surveillance schedule without much problem. (In other words, you don't travel a lot and you will not try to put off seeing the doctor.)
              You believe that you have already been cured, and you do not want to put yourself through any further treatment without evidence that it is actually needed.
              You are not comfortable with the expertise or quality of the radiation oncologist or radiation equipment available to you.
              You are interested in having a baby NOW, and you want to try to do it the old fashioned way.
              You are interested in conceiving a baby in the next year or two, and you do not want to worry about the effects of radiation on your sperm.
              Your odds of being cured are the same as if you chose any other treatment, so why not minimize the immediate pain and take your chances later?
              Your job, finances or personal life would be more convenient if you waited until another time to be treated. In other words, you can handle getting treatment, but now is not a good time. (For example, if your wife just had a baby or you are nearing the end of school.)
              This is an unusual one, but important. If this is your second time around with seminoma and you have had prior radiation, surveillance is pretty much your best option.

              Why should you NOT choose surveillance?

              You cannot live with the idea that there might be cancer growing inside of you while you sit idly by and do "nothing." In other words, to be sure, now.
              Your odds of recurrence are much higher than normal, (For example, the tumor was larger than 4cm, you are less than 35 years old, and the tumor showed evidence of vascular invasion) and you'd like to do whatever you can to avoid chemotherapy.
              You ignored that lump for a long time, and in spite of what you have been told, you have a hard time believing that you caught it before it spread.
              You do not have easy access to a hospital with a CT scanner.
              Your job or personality make it difficult to ensure that you would stay on the strict surveillance schedule.
              Your job, finances or personal life would be more convenient if you got the whole thing out of way now. In other words, you can handle getting treatment now, but waiting and possibly getting it at some random time in the future may not work out. (For example, if your wife is going to have a baby in the near future, you might not want to have to worry about going through treatments at an inopportune time.)
              Your job or hobby (scuba diver, jet pilot, for example) would be adversely affected by the side effects of chemotherapy, and you want to do whatever you can to avoid it.
              10/09/06 -- pT1-pNx-Mx-S0


              • #8
                We also paid $300 out of pocket for the pathology and consult....but that went towards the deductable which we hit really fast. One thing that struck me at Sloan was in the waiting room. The number of young guys there, some with moms, some alone. The two guys swapping RPLND stories. The LiveSTRONG bracelets. It was a humbling experience.
                Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.