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  • MisDiagnosed ????

    After waiting what seemed like an eternity the Urologist finally called us in with the pathologist report. My 23 yr old son Adam had an L/O on 10/22 and was told he had TC. Dr. is saying now its not cancer, it appeared to be a blot clot/hemmorage. He said all Dr.s conferred it was TA, said the diagnosis was wrong, but the treatment was right. They had to do a Orch regardless of it being cancer.

    My son asked me if I would send the slides to Dr. Vic Rueter and Sloan which was done today for a second opinion.

    Has anyone ever heard of this before ????

    Also last Friday before we got the results, we asked the Urologist about his chest Xray and Cancer Markers, he indicated cancer markers and chest Xray were normal, which I thought was a good sign.

    I actually was suprised Adam was not happier at the news he just received, but I think he's almost in disbelief of not having cancer after they've told him since Oct 14th that he did have it. AD MANS MOM
    Last edited by Ad Mans Mom; 10-30-07, 04:18 PM.

  • #2
    Adams Mom, wow, what a roller coaster ride you and your son have been on. I have mixed feelings for you....I am thrilled it is not cancer ...but I also think having a second opinion never, ever hurts. Let us know how it all turns out and I hope for all the best for you and Adam.
    Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
    Current DVT
    Current testosterone replacement therapy, Testim.

    "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

    Comment


    • #3
      You might want to check this thread where we had a college student who ended up with a benign tumor.
      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.

      Comment


      • #4
        The statistics indicate that ~95% of suspicious masses in the testicle are cancer, hence the need for an I/O. I do agree with your son, a second opinion on the pathology is a great idea.

        But things sound promising. I think sometimes when you get a mindset that you have cancer, it can be very hard to let your guard down, just in case someone made a mistake. But I would think any pathologist could tell the difference between a hematoma and a tumor. So I'm optimistic that there is no TC.

        But, do get the second opinion.
        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.

        Comment


        • #5
          Originally posted by Fish
          I think sometimes when you get a mindset that you have cancer, it can be very hard to let your guard down, just in case someone made a mistake.

          But, do get the second opinion.
          Excellent point Fish- I know it would mess with my mind too.
          We don't often get to see a "favorable mis-diagnosis"

          It's usually the other way around, and far too often.

          Ad-Mans_mom,
          This is excellent news, and I will pray that the second opinion reveals the same thing. NO CANCER.

          God Bless

          Son Anthony DX 12/11/06
          L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
          4XEP 1/29-4/6/ 07
          AFP started increasing3 wks later
          Residual abdominal mass found on CT
          RPLND 6/8/07
          Cancer in pathology-
          80% mature teratoma, 20% Yolk Sac. --
          No adjuvent chemo and
          AFP normalised

          July 22, 2010 ---- 3 years all clear!

          Comment


          • #6
            Originally posted by Ad Mans Mom
            I actually was suprised Adam was not happier at the news he just received, but I think he's almost in disbelief of not having cancer after they've told him since Oct 14th that he did have it. AD MANS MOM

            No Cancer is always a good thing, and it is our goal here.
            The second opinion on the path is very important- glad you are doing it.

            Adam is a young man, and I could understand if he would feel somewhat dissapointed- or even violated at having the IO, in his case.
            Over time he will learn that the IO changes nothing in him- as far as physically and mentally. Life for me is just as it was- in terms of "am I missing something ". I'm sure Fish will agree with me, Adam will live a normal life.

            PLease let us know what the second path report finds.
            Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
            Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

            Please see a physician for medical advice!

            My 2013 LiveSTRONG Site
            The 2013 Already Balders

            Comment


            • #7
              This is Adam, hey ma!

              The reason I was not as happy as I should have been not having cancer, was because of my age it was unlikely that it had spread. I had already endured the surgery for the cancer. Only other things they could have done would have been radiation or chemo. I am very thankful it didn't have to go that road. In the docs office I have been numb and in my own world...I am sure happiness is the last look on my face.

              However, I am thrilled I don't have cancer. Who wouldn't be after being told you had it?

              My problem is, I didn't require surgery at all. It was a blood clot that would have gone away naturally. Thats what my doc admitted to me today. Being a urologist I trusted him to make a sound diagnosis. I endured the hellish surgery most all of you are well aware of, all because my Urologist and his radiologists couldn't properly read my ultrasounds?

              Sounds like medical negligence if you ask me. The process went so fast. I had no time from the they diagnosed cancer, and set up my surgery to go get a sperm count, or a second opinion on what was really wrong.

              Not thrilled I don't have cancer? Of course ma.

              Guys can you imagine going through all this, then come to find out it was not necessary?

              Comment


              • #8
                Adam - congratulations on the mis-diagnosis! I wish I could recieve a call like that from my physician - I would send him flowers!

                I can understand your anger on an unneeded I/O surgery. Frankly I am surprised. My doctors did a CT, ultrasound, urine, blood-check, and XRay before going ahead with the surgery. Most of the tests were negative, however the blood work confirmed the presence of tumor markers. Which is when he scheduled surgery. Did your urologist conduct similar tests to confirm his diagnosis?
                Manoj
                09.29.07 - visit to ER with severe pain
                10.08.07 - Dx with TC
                10.10.07 - Rt I/O. Dx - 90% EC, 10 % yolk sac tumor, less than 1% immature teratoma & choriocarcinoma
                11.21.07 - (day before Thanksgiving) NS RPLND @ MSKCC
                11.28.07 - Return back home, recieve lab report. 86 lymph nodes removed - all clear. Begin Surveillance
                04.10.08 - 2 cm nodule detected in lungs
                04.28.08 - Starting 4XEP
                07.03.08 - 4XEP complete
                end-Sept - CT Scan scheduled

                Comment


                • #9
                  We know the betrayal. Russell found his lump before a practitioner could feel it. After multiple attempts to see MDs, he was finally diagnosed...advanced metastatic cancer. It is a daily task for me to find my balance and concentrate on choosing the strong foot to put forward. So far so good...we plan to just use this and let it make us wiser, stronger and more understanding for the situations and people yet to come into our lives. None the less, any loss, physical or emotional will take a person through all of the stages that a person goes through when they deal with death. There will be anger, sadness, denial, negotiation and eventually acceptance. These are normal and healthy stages. Not on the fun side of life, but valuable!!! So sorry for the loss. It does my heart good to know that your doctors were acting so quickly if the need was there as compared to the alternative that we have seen. Without knowing you, I can only imagine by your involvement here that your back back of life has just had some very valuable life skills added!! Take care, Sharon
                  Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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                  • #10
                    Thanks ya'll. Sorry I typed that after being awake for about 40 hours straight. I have been having a really hard time sleeping since I met with the doc.

                    To reiterate, I am very happy to not have TC. My doc told me there was no other reason that I would have that mass in my left side.

                    But, as a trained Urologist how do you read a blood clot as a possible cancerous tumor?

                    Had I gone to a different Urologist, would this have happened?

                    Would have another doctor have spotted the blood clot and told me to go home?

                    Had my doc even given me a single sense of doubt, I would have gone for other opinions. However, everyone stated to get the cancer out as soon as it is diagnosed.

                    I feel like I have been dragged through hell and back, and all for nothing. All because my doc and his team weren't qualified enough, or didn't see TC cases often enough to handle mine.

                    I had come to terms with the fact I had cancer (which was a hard thing to do after watching my grandmother die for 5 years with Ovarian cancer). I endured the I/O surgery. Everything felt like a nightmare I couldn't wake up from. From the day they "diagnosed" me.

                    Now I don't know how to feel. My emotions are all over the place. Anger, sadness, and depression all rolled into one.

                    How was this guy able to do this to me? I understand he was trying to help, but it was his job to make sure that he wasn't removing a body part unnecessarily. I know he didn't think that he was, but to me, that's beside the point.

                    Why was this never brought up to me? I didn't know it was even possible for a blood clot to be there instead of a tumor. I am not the doctor. That is the last time I will ever trust or be treated by a medical physician again.

                    My emotions are out of control right now. My heart goes out to all of you who have gone through this, and more. Don't get me wrong, I am very fortune to have not gone through the lymph node surgery or any chemo or radiation. For that I am thankful to God, not my doctor.

                    There was no reason to take my testicle. Whether he thought he was doing the right thing or not, to me that's irrelevant. He made a mistake that can not be forgiven. I really don't know where to go from here.

                    This roller coaster of a month has been the worst experience of my life, and then to find out at the end of it all that it shouldn't have happened is down right unacceptable. I may be typing this to the wrong crowd, because I am sure most of you have gone through what I have and really needed it. You are probably reading this, thinking that I should be thankful I don't have cancer. I am ecstatic, but there HAD to have been other ways to detect prior to removing my testicle and putting me through this nightmare.

                    I honestly would have rather been lied to and had the doc tell me it was a non-cancerous tumor. I lost my life for this past month. I lost my sanity...over a mistake...?

                    Nothing seems real anymore. I feel like my life is one big bad dream.

                    Comment


                    • #11
                      Your feelings and emotions are valid. Although circumstances are different, the betrayal is common ground. For me it is insanity that will present itself forevermore. It is like dragging a dead animal around. There is no place to put it. Can't give it to anyone, can't scream it away, can't make friends with it, can't trust it, don't want to do more harm with it. I only know that we could stand together...I am always grateful for people who understand my confusion. Hugs, Sharon
                      Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

                      Comment


                      • #12
                        Adam,
                        I knew you were going to feel this way- I suppose I would too.
                        What's done is done. Can't be changed now- so you have to deal with the Here and the Now.
                        And your Here and Now looks good-you are going to get past this terrible month.
                        I wrote this before, and I'll write again:
                        Losing the testicle will not effect your life. Your preformance, energy levels, fathering abilities... The worst thing would be you may need HRT down the road- but I doubt it.
                        I'm sure the other guys here will chime in to tell you- you will live a nomal life.

                        I know of women that have had complete hysterectomy, or double mastectomy if there is even the slightest chance something was wrong. No regrets.

                        Don't let it eat you up- you will end up on Atavin like the rest of us.
                        Joe
                        Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                        Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                        Please see a physician for medical advice!

                        My 2013 LiveSTRONG Site
                        The 2013 Already Balders

                        Comment


                        • #13
                          Adam,

                          To say that the situation you are in right now is infuriating is an understatement. I would feel exactly the same way you do, and I am not going to make an effort to sugar-coat it. I have absolutely no training in radiology, so I have no way of knowing whether someone could tell between a blood clot and a solid mass from an ultrasound. If you think this might help, I would consider speaking to the chief of urology and the chief of surgery at the hospital where you were treated (you might also want to bring in someone from patient and family relations). I don't know what, if anything, this will accomplish; but at the very least you can try an ensure that a mistake like this doesn't happen to someone else.

                          Mistake aside, you are in the same shoes most of us are (minus the cancer part). Although this will provide no comfort right now, you should rest assured that you are capable of functioning with one testicle (there's a good reason we have two to begin with).

                          I really hate that you are going through this. I am certainly glad that it wasn't cancer, though. I love the people on this Forum, but I dislike every time our membership increases no matter the reason. Feel free to vent out as much as you need, and we'll help in any way we can.
                          "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                          11.22.06 -Dx the day before Thanksgiving
                          12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                          Comment


                          • #14
                            Adam:
                            If I were in your position I’d be every bit as upset as you are. I’m not trained in radiology so I really don’t know if they should have been able to tell that what they were looking at was not a solid tumor. All I can really say is that I'm sorry for what happened but it is a relief that it was nothing more then a collection of blood vessels.

                            Have you considered getting a prosthesis put in? It might help to relieve some of the anxiety over future events and explanations.
                            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.

                            Comment


                            • #15
                              Adam:

                              I'm also very sorry to hear that all you went through was unecessary. I would be Pi**ed too. Having looked at ultrasounds, I am amazed anyone can get much detail from them. On my US, the actual tumor did not look much different than the normal part of the testis. My doc did follow up with an MRI, but I'm sure he only did this because I had already lost one testicle. I don't know if an mri or CT would have helped in your case. But for TC docs rely heavily on ultrasound.

                              You stated
                              Originally posted by Adam
                              There was no reason to take my testicle. Whether he thought he was doing the right thing or not, to me that's irrelevant. He made a mistake that can not be forgiven. I really don't know where to go from here.
                              As I said, for now, you have a right to be in shock and even pursue legal action if you choose. As for forgiveness... Years ago I was a volunteer with CanSurmount, a program of the American Cancer Society. We spent weeks in training before we got to begin visiting with cancer patients. One thing I learned has really stuck with me. "Forgiveness frees the forgiver" If you use your energy to stay angry at this doc for the rest of you life, who is hurt? Certainly not the doctor. He's going to move on. It takes a great deal of time and energy to be angry. Sure I still get really ticked off at times, but I choose, CHOOSE, not to stay mad or hold a grudge. My life and time is too important to me to waste in on something or someone that has passed.

                              I hope you find a way through this. You have a long life ahead and I hope you can soon focus on all the good things to come.
                              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.

                              Comment

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