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  • Misdiagnosis

    Hi All,

    I've known several friends who were misdiagnosed by PCP's as well as Urologists before finally getting a TC diagnosis. Why do you think so many people are misdiagnosed, even after an ultrasound--is it because this is such a rare form of cancer that not enough radiologists see it, or urologists for that matter? Thoughts?

  • #2
    You're on the right track. When a young guy in their 20s shows up at a clinic or ER with testicular pain, a common preconception is that it is an STD or some other source of inflammation which they deem treatable with antibiotics. Given that there are about 8,000 annual cases of TC in the US a year, the odds of a PCP having seen a case are low. A urologist, however, should not rule it out until having done a physical exam and ordered a scrotal ultrasound. When I was diagnosed, my PCP suspected a torsion, which is also diagnosed by ultrasound, so that helped point the ER crew in the direction of a TC Dx.
    "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.


    • #3
      I think I read somewhere that misdiagnosis rates of TC are about the same as most other cancers. Ovarian and cervical in young women, I believe, have higher rates. It's not something doctors "expect". Very frustrating. As simple as TC is to diagnose with ultrasounds and blood tests, doctors are under pressure from insurance companies to control costs. I can't believe I read about docs trying the shine-a-light-thru-the-scrotum method, try antibiotics for a couple weeks approach, but it's still done.

      Ultrasounds can at times be deceiving if the tumor approximates the size and shape of a normal testicle because there are no clear margins to differentiate tumor mass from normal testicle tissue, which was my case. But my radiologist was so experienced that he actually wrote in his report that the tumor "is almost certainly pure seminoma", which was found to be correct. So experience counts for a lot.
      "Statistics are human beings with the tears wiped off" - Paul Brodeur
      Diagnosis: 05Sept07 Right I/O: 13Sept07; Pure Seminoma; Surveillance only per NCCN: All Clear August2013 (CT scan, Markers)


      • #4
        It's funny you mention that. I actually was told by a guy in the medical field that a ultrasound is only as good as the radiologist who is reading it. I've also heard of people having cysts that was hiding the cancer, and even people with Epiditimis (spell??/) dx that actually was TC. I think it's just scary how many people are misdiagnosed--I'm so glad insurance companies like to keep the cost down by possibly costing someone their life.


        • #5
          Yeah talk about radiologist skill.

          My first U/S, the person knew something didn't look normal but sat on the fence and wasn't willing to comment further. Just said the areas were hypoechoic (there is a scan of my first report in one of the links in my sig).

          For the second U/S, the guy seemed pretty sure and seemed to know what he was doing. He even turned the screen to show me.
          100% classical seminoma (I-A, RTI). Surveillance (no adjuvant therapy). 4 years all-clear and hoping for many more.


          • #6
            I think it's also how we treat young people in our society. "oh they're just kids" "the young kids today are punks" etc. Three docs my son saw didn't take what he said to heart. He kept saying he did not hurt his back, they kept telling him he did. Believe me, it's difficult for a 20 yr old guy to go to a doctor in the first place. Why wouldn't a doctor really sit and "listen" to what he had to say? They all brushed him off and sent him home with vicodin. Those are probably the same people who gripe about the "kids of today being on drugs." I have to stop writing now, I'm getting so angry. How much did my son's cancer grow while they were misdiagnosing him???

            ~Mary Ann
            CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

            Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience


            • #7
              Originally posted by jpw172 View Post
              It's funny you mention that. I actually was told by a guy in the medical field that a ultrasound is only as good as the radiologist who is reading it. I've also heard of people having cysts that was hiding the cancer, and even people with Epiditimis (spell??/) dx that actually was TC. I think it's just scary how many people are misdiagnosed--I'm so glad insurance companies like to keep the cost down by possibly costing someone their life.
              It is interesting you bring up Epididymitis. The first day I went to see the GP, he and the Radiologist were fighting over the results of the U/S of the scrotum. It was between EP and another infection due to a fluid filled sack in the abdomen that is suppose to go away after you testes drop??? (no test was done to check for this sack *Assumption*) They were sure there was an infection on the Epididymis due to the fluid that was found in the testicle. This turned out to be an infection around the tumor which made the tumor hard to see. Either way, before telling me what was suspected, he questioned my sexual history and basically told me I was lying or my wife was cheating on me (Come on, have you seen my wife next to me! Most people think she is with me for charity!) Well as stated earlier, Epididymitis is 95% of the time cause by an STD like Gonorrhea. I'm not sure if there is a blood test for it, but there sure is a test a blood test that checks for almost every TC neither was done. A month later I was diagnosed. Now that I think about it...

              I dedicate this post to my Right Testicle *May 2, 1985- April 18, 2008*
              May I never forget
              Diagnosed 4/17/08
              Right orchiectomy 4/18/08
              Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
              4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
              HCG down to 7.2 10/28/08
              HCG back up to 198 12/29/08
              1 X PVB 1/2/09-1/6/09
              2 X HDC w/ stem cell rescue 2/4/09-3/14/09
              Follow-up with Dr. Einhorn 4/22/09
              HCG 1.2
              3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09



              • #8
                I was one of the lucky ones, but I realize that it could have been far worse. Back in early August when I first noticed that infamous lump on good ole' lefty, I went to see a GP at a walk-in clinic. After waiting about three hours, I was in and out of his office in about two minutes flat. He had a little feel around and basically all he said was "I'm sure that's normal." No U/S ordered, no blood work, NOTHING. I could've just shrugged it off but I knew that something wasn't right. Luckily enough, my Mom is a nurse and when I had told her what had happened she wasn't satisfied at all either. So fast forward a week, and there I am seeing another GP, followed by the U/S, which confirmed what I was fearing. I/O a couple of weeks later and to make a long story short, I received a call about a month after the surgery from the initial clinic that I had gone to. It turned out that the doc. had set me up for an appointment with a urologist in March. MARCH! 8 MONTHS people! With the aggressive nature of my tumor, it's scary to think what would've happened if I had to hold off until March. Just goes to show that if something doesn't feel right, don't stop until you know what is going on and are satisfied.
                Diag. 08/20/08
                Left I/O 08/22/08
                NSGCT (100% EC); Stage IA
                Adjuvant 1xBEP 10/27/08


                • #9
                  I am with Mary Ann....almost too angry to talk. (Scott...also understanding is an interesting balancing act!) All of the health reform conversations become sooo complex. Over the years I have watched distortion occur in the government, at the bedside and in the deep pockets. There have always been the compassionate ones, the ones out for personal gain, the ones just in for the pay check and then just plain old "had a bad day problems." Who ever will know. Personally, I believe that the dollar drives the behavior in todays healthcare. Even the compassionate care providers are bound by the structures of 7 minute exams, quality review that will reprimand any deviated processes that they might activate and etc., etc. Overtime, the behavior becomes the norm. There is a lot of "most likely" diagnosis, for the sake of time saving, cost saving, tired providers. Sadly I agree with the pre-conceived notion about patients. Have seen some horrid judgements placed onto patients only to learn later that there were deep seated concerns for neurologic impairment, behavior etc. (Porhyria is one great example) In my mind, it is all of the above and more. But what to do? No matter what system we have it can distort again. Over the years have watched the Veterans administration go up and down with care, and as well, (cough cough) the private healthcare industry. No matter what we create, the same deep pockets will still be present. The same bad days, etc will occur. Maybe this is a deeper moral issue? Personal accountabily and intergrity. Wouldn't most any model work if there was true personal integrity!?!? Sorry for the rambling. I am curious to know how, whatever the model changes to, just how we will keep the train on track....change the pattern of deterioration after the excitement goes down. In my life, the horrors of mis-diagnosis are linked to every breath. Recently I have shared with Russell, that I believe he is not unlike a strong soldier who has returned with exhaustion and wounds from a war. Part of the whole, lasting positive change for those who follow is a reality now. LOVEstrong, Sharon
                  PS We will see the oncologist tomorrow's and cxr normal! Liver? Russell has signed up for Wyotech-auto tech in Sacramento. He has gotten a tattoo! Cancer has dropped him like Dorothy into OZ.
                  Click here to support my LIVESTRONG Challenge with Team LOVEstrong.


                  • #10
                    In a way having had TC1 possibly saved me some time with TC2. When I knew TC2 was on the go I went to see my GP and he thought it was an infection and gave me some antibiotics. Due to my history he said we'll do a blood test just in case. One of the makers came back as 4 with a normal range being 0-3. So off to the urologist I went.

                    He thought it was an infection as well and gave me some more antibiotics but due to my history booked an ultrasound just in case. He even wrote to my GP at this time saying he thought it was an infection.

                    At the ultrasound I asked how it looked. He said 'as you've asked' and then showed me the screen and he told me the score which wasn't a surprise.
                    TC1...1997, Seminoma Stage 1, Radiotherapy
                    TC2...2009, Seminoma Stage 1, Adjuvant chemotherapy (1x carboplatin)


                    • #11
                      Please I think I'm having the same misdiagnosis can anyone read this and tell me what the think.

                      One week ago I found a lump growing on my epyditimiyis (between the size of a pea to a marble) so close to my left testical that it feels like it's practically attached. The only reason I found the lump was because of a strange tenderness I felt in my testical when sitting one day. It is more or less painless but very tender and uncomfortable. Right now I'm studying abroad in Florence and when I first went to the hospital there were some translation issues and I told them I had pain because I was scared and that's what I thought it was. The doctor sent me to do a testicular ultrasound but I'm not sure the ultrasound technician found the lump because of the language barrier. She checked for hydrocele and other things but I can barely understand the report because it's in medical terms and also in Italian.

                      The doctor sent me to see a urologist, he spoke little English but it was enough. He checked my lump and asked if it hurt when he touched it and I said yes even though it was just sensitive and tender. He said it was epiditimytis an he prescribed me 5 days of Levoxacina which is a antibiotic only available in Italy and Portugal usually used to treat UTIS.

                      Now I am finished my antibiotics and the marble sized lump has not changed and it is so uncomfortable that I have to spread my legs wide open to sit on a chair comfortably sometimes. I have also had for a few days a pain in my lower back and a strange sensation in my groin. I am so incredibly scared now I can barely sleep, is it possible that they misdiagnosed TC for epididymitis because I told them I had pain when really it was tenderness? Does anyone know how common cancer of the epididymis Is? I understand from the internet that most epididymal lumps are not cancerous but also I understand anything is possible. Im going to go back to the urologist as soon as possible but until then can anyone tell me anything? It's hard getting clear medical advice in a foreign language.

                      -I went back to see the urologist about the antibiotics not working and he told me to wait 3 days and continue to take ibuprofen for (swelling) then if the lump stays the same I should go to ER.

                      Thank you to everyone in this community.


                      • #12
                        If the lump is not part of the testicle itself but is in or attached to the epididymis then it is almost certainly not cancerous. It is more likely to be either an infection or a cyst. You having pain is actually a good sign. Most TC is actually painless though a few cases do present with pain or discomfort. An ultrasound is the definitive test for diagnosing TC and it normally stands out like a sore thumb.

                        I don't think this is a TC but if nothing changes in a few days then I would make the effort to see a Doc who speaks English.


                        • #13
                          Because doctors dont rule out cancer first. It is when all other options have been exhausted "hey maybe we should check for cancer" and for many, they have dealt with their issues for months, if not years and the cancer has progressed. I think that it needs to be flip flopped in many cases. Rule out cancer first, especialt since everyone knows the best chance of pulling through is early detection with any cancer.
                          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!


                          • #14
                            Grant my 17 year old first went to Urgent Care on 11/17/16- they prescribed antiobtoics. They did tell his dad that he should go to his regualr dr. if things were not better. Grant presented with PAINFUL testicle, very swollen. Everything I read said that Testicular Cancer is not usually painful, so I dismissed that from being what was wrong. I was thinking Hydrocele.
                            Grant said the pain subsided some at the end of the 2 weeks, but on 12/20/16 he let me know again, that something was not right. Thank goodness!!!
                            Son Grant
                            dx 12/21/16 at age 17

                            BEP x3
                            Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                            2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                            Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.