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  • Is anyone dealing with mis-diagnosis

    We seem to be gathering a lot of information about TC, but I am having trouble finding directions for support around mis-diagnosis. It took 5 dotors over a year before they said metastatic. (nodes and lungs, advanced) My son went in at the first sign of a lump in his testicle and was sent to a specialist. No diagnostics were done and he was told it would go away. One year later, seen for back pain...xray and pain meds, two months later, muscle relaxants, finally diagnosed in the ER. Now the works. I am looking for the extra psych support that might be needed. I am guessing there will be anger when it is finally safe to have some. Thank-you!
    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

  • #2
    Hello,

    My brother is going through a little screw up that his doctor made as well, so I know how you feel about the anger.
    So what are the doctors going to do now?
    Kim

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    • #3
      I'm so sorry your son is at the stage he is now after seeking help so early.TC is rare enough that many docs don't recognize the symptoms and may never see a case in their entire career. That's why we strongly advocate going to a urologist rather than a GP, pushing for ultrasounds, and not accepting "I THINK it's nothing" as an answer. You can't go back in time and must deal with where your son is now. There is a list of experts on the tcrc.arc.org site and consider you contacting for at least a colnsult to make certian no more misteps are made by your docs. If you can tell us what part of the world you live in members may be able to suggest excellent centers for TC.
      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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      • #4
        Welcome to the forum:
        I agree with Karen TC is very rare and many doctors don't see many cases if any in a year. I was lucky with the GP being my age and knowing that it is something to look for in our age group. Now is the time to look forward with the power to say this is something that will be cured. We will be here to help you and your son there are so many helpful people on this forum that have seen just about everything between them all it is a great source of information.
        Please feel free to post any questions or just to vent we are here to help.
        Brian
        5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

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        • #5
          My situation was similar - misdiagnosed by my GP - but I was able to catch it early enough that it only spread to a couple of nodes.

          Like others have already pointed out, TC is very rare. My GP had never seen a case in nealry 30 years. As a result, he started out thinking it was just an infection then when the antibiotics didn't work, he tried some anti-inflammatories. He even had me go for an ultrasound and all the usual blood tests (but no tests for tumor markers!). Since the ultrasound came back with no typical sign of a tumor, he continued to say "not cancer".

          After a couple of months with no improvement (severe swelling, occasional pain), I told my doctor, "It's time I see a urologist!" and he agreed. The first one I saw said "It's cancer" within 3 minutes of the start of the exam and he ordered a blood test for tumor markers which came back positive.

          If my GP had diagnosed me correctly - or sent me to a specialist right away - I probably wouldn't have needed chemo. I was told by an oncologist at Sloan Kettering that my type tumor was extremely fast growing and it probably took just a fewmonths to go from first sign of trouble to the nodes.

          Yes, I was angry with my GP at first. I even went to his office right after the diagnosis from the urologist and somewhat angrily questioned why he didn't even consider cancer as an option in my case.

          There's no sense in looking back. You must focus on the future and what it's going to take to get your son well. I'm sure that, like most TC survivors, he'll be fine.
          TC diagnosed 4/3/06, [email protected]; Left I/O 4/10/06; Stage IIa Non-Seminoma, 100% Yolk Sac; Started 4xEP 5/22/06 with [email protected]; Finshed 4xEP 8/11, AFP normal, CT scans clear! Now on surveillance

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          • #6
            thank-you, it was the Urologist!!

            Thank-you for the support. Sadly, it was the Urologist that told him it was nothing. He was supposed to be the expert after the GP. No ultrasound, no tumor markers!! I demanded UCSF (San Francisco, Calif.) as a second opinion, but we are pretty well caught up in the HMO. I will sell my house if I have to, to get the care needed. Today is day 5 of the 3rd round. Russell has been vomiting (even had Aloxi) about once an hour. My emotions are scattered. I don't want to let loose here. Again, thank you and am so glad that I found this site. Still open to suggestions! Sharon
            Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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            • #7
              mis-diagnosis

              Hi Russell's Mom,

              My TC was diagnosed correctly and quickly, but then after my orchiectomy my doctor did not order proper surveillance. As a result I ended up with a large, fast-growing tumor in a lymph node and needed chemo.

              Although you haven't given all the info about your son's situation, I hope that you are using the info found on this site to allow yourself some optimism.

              You mentioned selling your home OUCH! is your HMO and coverage really that inadequate? One thing I did during chemo was get a second opinion from a hospital with a strong cancer specialty. I went to USC Norris Cancer center in Los Angeles and had a fantastic exam with Dr. Derek Raghavan (now at another hospital apparently) who gave me all kinds of in-depth information and insight. This appointment cost $135.00 and the money was very well spent, since it gave me some peace of mind. They basically told me that although my Doctor had screwed up I was now receiving the correct treatment. The doctor also wrote an excellent letter that would have been quite an asset had I needed to go for a malpractice award.

              Maybe there is someone at Stanford who you could pay cash to for a second opinion?

              My heart goes out to you as you stay strong for your son,

              JS
              Right side orchiectomy, March 2001, 4.5 cm tumor with probable vascular invasion. Chose surveillance.

              9.5 cm groinal lymph node tumor found in Dec. 2001

              Finished chemo (cisplatin/etopicide) in March 2002.

              Two healthy daughters born naturally after chemo, one in January 2004, another in November 2006.

              Continued remission to present

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              • #8
                Russell's Mom:

                I'm very sorry to hear about this situation, especially when your son did everything right.

                You're being too kind talking about mis-diagnosis. What happened was malpractice, and you should not be paying a penny out of your pocket. I know things are difficult and hectic and incredibly stressful at the moment. However, you seriously need to consider retaining an attorney.
                There is no excuse for misdiagnosing TC the diagnostic tests are too basic and readily available.

                You and Russell are in my thoughts and prayers.
                Fish
                TC1
                Right I/O 4/22/1988
                RPLND 6/20/1988
                TC2
                Left I/O 9/17/2003
                Surveillance

                Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

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                • #9
                  If you go out of network on the HMO you should only have to pay the difference between what the HMO doctor would charge and what the Non HMO charges. Co-Pay might be at the highest level you plan has. I can go out of network I just have to pay the difference. Just a thought many doctors will work with you on the payment they might even cut it to what the HMO will pay them if not in the network. Also might ask if the doctor would want to join the HMO network as one of their doctors doctors hate to turn down business.
                  Also if the URO missed this I would consult with someone that isn't something that should be missed in todays medical.
                  Brian
                  5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

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                  • #10
                    Thank-You!!

                    What helpful information!! This will be very valuable when the conversations begin around the surgery. I'm getting pretty tired and am appreciating every bit of info. Sharon
                    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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                    • #11
                      Sharon, when Chris found his lump, our GP sent us to an experienced urologist in the same building.....30 years experience, he did a physical exam of Chris and put us at ease....said it was nothing...that he was led to believe by the GP!! that it was serious...not to worry, we went home and celebrated.....the next morning I took the day off, Chris was sleeping...he called himself and yelled in the phone to get Chris to Sloan, his AFP is 84....I was in shock......we also had to to get tons of documention if Chris would need RPLND that we wanted it done with a Specialist, not locally....and our insurance company came thru with a decision on our side...when I asked a local surgeon how many RPLNDs he had done, he looked at the floor and said ..."enough"...that wasn't enough for me....hope that helps...Mary Ellen

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                      • #12
                        another thank-you

                        I'm going to hold strong!!!!! Sharon
                        Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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