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  • Worried about complicated problem...

    Hoping someone here can offer some advice, or at least validate my impressions of what's going on w/ my husband - this is long and complicated, but I'm at my wit's end right now so bear with me.
    Last fall (10 months ago) my then 37 YO husband developed an inguinal hernia on the right side while at work - his second, the first being in his late teens. Concurrently, he developed a painful, swollen right testicle. He saw a worker's comp. Dr. who diagnosed him with an incarcerated inguinal hernia, and told him he had epididymitis based on the physical exam. He reduced the hernia, told my husband to see what happened over the next couple weeks, and to call if the problem worsened. Due to the swelling and pain in his testicle, I urged him to seek a second opinion, which he did, the same day. THAT Dr. (a urologist) told him he had prostatitis, and put him on three DAYS of cipro (he has had recurrent bouts of prostatitis in the distant past and knows those symptoms). I found out later that the urologist he saw has paid out several malpractice suits, which I can imagine if he's treating prostatitis with 3 DAYS of ABs. No mention there of why prostatitis was causing such swelling and pain in the testicle.
    When the pain and swelling did not resolve (nor the hernia, which continued to pop in and out) he was referred to a surgeon, who scheduled surgery for the following month. Because his symptoms continued to worsen the surgery was moved up and he ultimately had a the hernia repair (open w/mesh). Upon recovery of surgery, the testicular swelling and pain resolved almost immediately (w/i a couple days).
    A month and a half or so ago, 8 + months post hernia surgery, the testicular swelling and pain in the testicle and also the groin at the surgery site began to recur - it was gradual in onset, taking a couple days coming on. It became gradually worse, so my husband went back to the original surgeon, who again told him he had epididymitis and that it was unrelated to the hernia and referred him to a urologist, and put him on bactrim.
    The urologist confirmed the epididymitis but also said he felt a mass-like lesion in the inguinal canal (not the testicle). He did not come right out and say it, but intonated its relationship to the hernia. He kept him on the bactrim, and said he was going to schedule an ultrasound. We waited for him to call with a date - he never did but 2 1/2 weeks later, the US lab called to tell us he'd missed his appt. (which he'd never been informed of). He scheduled another for later that week, and the US tech told him when he walked in that she had on sight eliminated testicular torsion as a cause, since he was walking, and then performed the US, telling him that he had a small stricture in what she called his 'vasal tube' and a "cluster of blood vessels" in his testicle, but nothing to worry about. So he didn't, except that for the ensuing 1 1/2 weeks the pain and swelling did not relent, so he called back the urologist, who had his receptionist call the following day to schedule an immediate appt. for that Friday, only to call back a few hours later to say the Dr. wasn't in that day, to come Thurs. instead. So, he went there, waited for 45 minutes, finally saw the doctor. The doctor somewhat sheepishly admitted that he was never presented with the US results, and that it was a good thing my husband had called, because it turns out he has a tumor in his testicle, as well as another mass in his testicle that the US tech called a cyst, but that looked more like a tumor to him. He explained (per my husband) that the mass was on the back side of the testicle and the "cyst" was adjacent to it, more on the outer side of the testicle (but apparently within the testicle). My husband said the US tech gave him different information, and the Dr. explained that they are trained to tell the patient that so they don't think they are imagining the discomfort (but based on HER words, he may never have even called the doctor back...) The Dr. said he wanted to run some lab work - tumor markers, a PSA, tests for sexually transmitted diseases and a urine culture. He then went on at length about solving the problem with the epidimytis - nerve blocks and removing the epididymis completely, etc. which to me seemed ridiculous if he was telling my husband he had a testicular tumor, which would mean removing the testicle, and thus the problem with the epididymitis. It made no sense to me that he would be even having that conversation after telling him he had a testicular tumor.
    Unfortunately at this point, my husband had been kept waiting so long that now the lab was closed, necessitating another trip the following day. The doctor told him to call back Mon or Tues, to make sure the Dr. had gotten the test results, since obviously there had been some problems in this area already. He went for the blood draw (this being Fri), and the lab told him the tests would be available to the Dr on Monday. He called the Dr. Mon afternoon and was told the tests results were on the Dr's desk, waiting to be read and the Dr would call him back when he was done appts. Well, he didn't call back, but the following day (Tues) we got a message from the receptionist stating that the tests results "still aren't in but the Dr will call as soon as they are". My husband called back to inquire as to the discrepancy and was told by the receptionist that she didn't know why he was told they were in or who would have told him that - his reply was that SHE had told him that...
    By Thurs we still hadn't heard from the Dr. so he called again, and demanded a return call from the Dr. that day. The receptionist did volunteer that his tests for STDs was negative. The Dr. finally called, had a ONE MINUTE phone conversation with my husband saying that his PSA was slightly elevated, and that the tests for the STDs were negative, that there were some "borderline values" in some of the other tests (he didn't elaborate, and my husband didn't ask) and that he felt he was dealing with "an infection" and told my husband to continue taking the cipro for a full 4 weeks. He wanted to schedule a follow-up ultrasound in a couple weeks, and instructed my husband to call on Tues. (last week) with a progress report. My husband was so relieved to hear this news that he didn't ask any questions, and was pretty irritated with me for making the obvious points.
    The symptoms did not diminish at all (or much) and when he called last Tues as instructed, the receptionist took a message that things were the same (ie: still bad) and that we had some questions we wanted answered regarding the tests. We waited all week for the return phone call and my husband called back Fri to find they were closed for the day - he left a message demanding a call back and requesting a copy of all his lab results, at my insistence. So, now, here were are, almost a week after his last message for the doctor, still waiting a return phone call to explain these tests results, still awaiting an appt for the follow-up ultrasound, still pretty much waiting for everything.
    So, I guess I am concerned about a few things - obviously my biggest concern is how this doctor went from "you have a tumor (or two)" to "you have an infection" - an infection of WHAT? The testicle? The prostate? Who knows... I am concerned that this doctor has decided its ok to wait a month to determine whether my husband has a tumor (or two) or not. I am concerned that this stems from some injury to the testicle caused by the original hernia - he had no problems with his testicle at all prior to getting this hernia. I am concerned that no mentioned was made of this "vasal tube" stricture, and the possibility that IT is causing the problem, or was caused by the hernia. Mainly I'm concerned that this Dr. has only been practicing for a few years and may not have the experience necessary to handle a problem that is this complex and that his office staff (and/or him) are completely incompetent - there has not been one thing they've done so far that has been without a complication of some sort, and the fact that he is so sloppy about test results really concerns me. I have urged my husband to seek a second opinion, but he is reluctant to go through all this again. Meanwhile, his testicle is still swollen and painful, though it has improved slightly, and does feel better with elevation and rest. Complicating things, I think, is the fact that he drives a truck for a living, and he is much more uncomfortable at the end of the day than at the beginning, feels much better on Mon a.m.s after not driving for two days, etc. It does seem to be more painful after sex as well, and he reports that the affected testicle is egg-shaped, but seems to be going side to side rather than front to back (ie its oblong, but its relationship to the unaffected testicle seems to be the wrong way). He *thinks* he can feel a mass, but he didn't before it was mentioned to him, so its hard to know if its there or not... The Dr. never mentioned being able to palpate a testicular mass, just whatever he felt in the inguinal canal, which he initially chalked up to scar tissue from the surgery, and then never mentioned again.
    While I am not, obviously, ruling out the testicular tumor diagnosis and in fact am very concerned about it, it does seem odd to me that he would have this problem begin with the hernia, go away for 8-9 months, only to recur with exactly the same symptoms that much later - it would seem to me a testicular tumor would do some progressing over that period of time, and would not "come and go" in this manner.
    So, hopefully, someone can offer some advice, experience or at least tell me I'm not over-reacting to this doctor's method of treatment.
    Thanks

  • #2
    Short Answer: Get out of Dodge right now. Gather up the US films and go see another Urologist. This is nothing to mess with. I was initially mis-diagnosed. This very well may turn out to be something other than TC, but why guess? If your Husband didn't like his mechanic, he'd go to someone else, right? I think this is a bit more important.
    I Love My Pack!

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    • #3
      Originally posted by TCLEFT
      Short Answer: Get out of Dodge right now. Gather up the US films and go see another Urologist. This is nothing to mess with. I was initially mis-diagnosed. This very well may turn out to be something other than TC, but why guess? If your Husband didn't like his mechanic, he'd go to someone else, right? I think this is a bit more important.
      Believe me, I agree completely. I have not cared for this doctor or his office since pretty much day one. My husband thinks I am over-reacting, doesn't understand why I "have it in for this guy", and while he's frustrated at the lack of communication too, doesn't feel like the guy has done anything "wrong". I think the translation is that he's gotten news that is better than "you have cancer" and he wants to be content with that.

      My opinion is that I don't want to wait until we KNOW he's done something "wrong". The level of competence in his office staff alone has shown me enough already.

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      • #4
        Wow... this is definitely a mess. My take here is that the best course of action is to start over. Find a new urologist immediately. The labs you have been dealing with clearly are not going to cooperate, and getting the lab results will be like pulling teeth. It also seems that the people at those labs are rather incompetent (i.e. tumor markers being borderline? Tumor markers are proteins that males are not supposed to have in large amounts), not to mention the docs you have been dealing with. A qualified radiologist will be able to tell from an ultrasounds between a cyst (fluid filled mass) or a tumor (solid mass); and if there really is a tumor, the testicle has to come out.

        I cannot overemphasize how crucial it is to get this diagnosis straightened out. While testicular cancer is treatable and, in most instances, curable, it is imperative that you move fast and be proactive. Don't wait for phone calls; just go there and heckle them. Perhaps the quickest way to get a conclusive diagnosis is to go to the ER and complain of testicular pain. Time is of the essence here. Don't hesitate in posting if you have further questions. Hang in there, but don't be complacent. Best,
        "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.

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        • #5
          You already have some of our BEST giving you advice, TCleft and FED, but from a wife to a wife...please urge your hubby to go to someone new and start over.

          The one thing to remember about TC is that it is rare in the world of cancer. To give you your bearings, 330,000 new case of prostate cancer per year compared to 8,000 new cases of TC. So some doctors go an entire career and never see a case of it. Some could be looking right at it and not know it is TC. Or your husband may not have TC and could be having trouble with his prostate, all that matters now is getting him the help he needs and FIRM understanding of what the issue is.

          You are being a great wife and looking out for him. Please let us know how it turns out.
          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

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          • #6
            Welcome. I'd get copies of ALL the records from these clowns, get copies of his lab reports and CT and get to another doc immediately. Please do not back off on this. If you can post the blood markers, CT and US reports we may be able to give some more guidance.
            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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            • #7
              Please, please move on this quickly. Hopefully, it isn't TC, but you are one smart lady to follow your gut instinct. What would you do if it was your son? If he acts like a child, then treat him like a child and take him to the doctor yourself.
              Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
              Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

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              • #8
                Mom knows best! We have lots of women here dragging their men-folk to the doc and appointments. They may gripe, but at least they're still around to gripe!
                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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                • #9
                  Originally posted by Mom
                  Please, please move on this quickly. Hopefully, it isn't TC, but you are one smart lady to follow your gut instinct. What would you do if it was your son? If he acts like a child, then treat him like a child and take him to the doctor yourself.

                  Yeah, well he does want to act like a child sometimes.... <g> Unbelievably, despite leaving a message last Tuesday and again on Friday demanding a return call and telling the service he wanted a copy of his records, and despite calling again yesterday afternoon and letting the reception staff know he was coming for his records (reply "Oh? Are you planning on seeing someone else?" - damn STRAIGHT lady) and that he was extremely unhappy to still be waiting for a call from the doctor (response he was greeted with on the phone was "the doctor still hasn't called you? Well, you ARE on the list", he IS going to call you") the doctor still hasn't bothered returning our phone call. So we have now been waiting over a week for a call back from this loser. I don't know if you can file a complaint over this sort of thing, but I'd really like to. I am definitely planning on writing him a letter letting him know what I think of his practice. Its frustrating too because my husband is pretty mild-mannered and would be unlikely to unload on these people to let them know what he really thinks. I, OTOH, would have no problem doing that, but since *I* am not the patient, I know I can't expect any information to be forthcoming through any route but my husband.
                  So, hopefully, my other half gets his records in hand today. The ditz on the phone said they would be ready today, and God help them if they aren't...

                  Thanks for the advice...

                  Comment


                  • #10
                    Go get 'em girl!!!! When I get treated like that I always make sure the person on the other end knows I'm writing down their name, the data and time, and what they said. I'm riled up just reading this!!!!
                    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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                    • #11
                      Originally posted by Karen
                      Go get 'em girl!!!! When I get treated like that I always make sure the person on the other end knows I'm writing down their name, the data and time, and what they said. I'm riled up just reading this!!!!
                      Purely speaking for myself, I don't know if I act childish simply because growing up is so completely over rated or that it's just so impressive to watch the ladies protect their own. Karen said it. You go girl!
                      I Love My Pack!

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                      • #12
                        I really didn't mean to come on so strong but my guy is one tough nut (no pun intended). His urologist moved out of the state and another doctor bought out his practice. I noticed that my husband stopped his follow up visits (this time for bladder cancer) and I just kept nagging him. Finally he said that he couldn't stand this new doctor and wasn't going to go to him anymore. Talk about cutting off your nose to spite your face! Well, one of my business associates (and believe me I had to feel comfortable about this) had some prostate problems so I asked if he liked his urologist. He recommended him highly. I called him up, made the appointment and told my husband. He blew up but he ended up going. Thank God because he has had a reoccurrence of bladder cancer two times and this urologist treated our son when he came down with TC. All doctors are not the same and this outfit that is treating your husband scares the sh!t out of me. Where are you located? Maybe someone from the forum could direct you to a good practice.
                        Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
                        Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

                        Comment


                        • #13
                          So, the most recent update doesn't offer much more than we already knew. My husband had placed multiple daily phone calls to the Drs office and finally got a call back from one of the nurses (I think...) that works there (it wasn't the doctor...). He expressed his concerns, and asked for an explanation of his lab work, and was told that the "borderline" test the Dr has mentioned was simply his urinalysis which demonstrated some blood and protein/semen in his urine. She said all of his tumor markers were negative, that the PSA was within acceptable limits, and told him he "shouldn't worry" because of that. She explained the regimen of antibiotics as the doctor wanting to rule out/treat any infection. When he asked about the tumor(s), she read him off the record that the dr had written he had a cystic mass, and had written and circled the word tumor(?) next to it. She said she would discuss what that meant with the dr and either she or he would call back to explain it. She also indicated it would take two weeks for copies of the record and US film to be available for him to pick up. My husband indicated to her (as he has with every other phone call) that he was NOT feeling any better, that nothing was improving, and she said she would discuss that with the dr. too. She called back two hours later, and her only advice was that he could take some advil for the discomfort and the Dr would see him again on his scheduled 10/23 appt. They had a brief discussion of when my husband could pick up his records, and she said he could pick up a copy of just the lab work tomorrow. No mention of the tumor at all, and my husband again didn't press the point. He says he got distracted by the conversation about the records (my husband also as ADD, I might mention...)
                          I seriously want to scream right now, I'm so frustrated with this entire situation. While I suppose negative tumor markers are a GOOD thing, I wouldn't consider that a CONCLUSIVE thing, and I want to know what this chuckle-head thinks is in my husband's testicle (or maybe at this point, I do not care what this chuckle-head thinks). There is another urology clinic not to far from here, and I am whole-heartedly encouraging him to seek a second opinion there (read that as nag, nag, nag).
                          Any thoughts on a cystic mass with negative tumor markers? I am assuming that if he had a discernable malignant testicular mass of 9-10 month duration, he would in all likelihood have elevated tumor markers, though I recognize there is a certain margin of error. So, I guess I am wondering about other causes - I strongly suspect that there is a correlation between his hernia and this problem given that the original problem began with the hernia... If the lab work ever gets here, I'll post more specific results.
                          Thoughts would be appreciated.

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                          • #14
                            HW:
                            Not all types of testicular cancer cause tumor markers to rise. The big thing that needs to be investigated is the mass. The tech/doctor should be able to tell if it's solid or not. If it's solid the testicle should be removed for examination. A cyst or infection will show up as a fluid filled mass.
                            Last edited by dadmo; 10-05-07, 07:56 AM.
                            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.

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                            • #15
                              I agree with patients advocating for themselves and their families. For what it's worth, I believe in polite (but direct) persistence over angry confrontation. It's clearly also important to have confidence in your doctors!
                              Scott, [email protected]
                              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


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