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Very worried wife

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  • Very worried wife

    Hi all. I am so thankful to have found this forum! I apologize for the long post, but we have been dealing with this for years. My husband is 38 yrs old. He has had problems with low testosterone for years- his levels without replacement therapy are average levels for an 80 yr old man. So he has taken every form of T replacement available to us here in the US. It is a constant struggle to find something that works AND that insurance will pay for. He had a vasectomy in 2008 and ended up with a giant hematoma in one testicle (because he disobeyed post procedure instructions and went back to work the next day.) Anyway, in 2012 he started having pain in the testicle that did not fare well after the vasectomy. He was diagnosed with epidydimitis (sp?) and given antibiotics. The pain would come and go and his T levels were never ideal so he was referred to an endocrinologist and had an ultrasound in 2014. The endocrinologist, after doing blood work and looking at the ultrasound, said my husband had a mass that was most likely testicular cancer and referred him to a urologist to have I/O. The urologist did an ultrasound in his office and said it was not cancer- it is just a varicocele and he needed to wear more supportive underwear. I was puzzled as to how one doctor could be so sure and another have such a varying opinion. Anyway, he continued trying testosterone replacements and dealing with periodic pain. Fast forward to 2017. He has a new urologist because we moved. New urologist performs a needle biopsy. I was very concerned when i learned this because I had read biopsies of testicles can spread cancer and it is very rarely done when TC is a possibility. Right?? My husband, who prefers not to read/research about this kind of thing, gets the biopsy without talking to me about it. It came back inconclusive, but husband actually told me it was benign and was found to be scar tissue. He did no€™t tell me the real results until a few months ago when he told me he was really worried because both testicles were hurting and now the formerly healthy one had a lump. We have transferred to a new location again and he did no€™t have a urologist yet. He went to his regular gp, who ordered an ultrasound, and diagnosed it as a benign calcified tumor. My husbands pain was intense and constant, so he was referred to a urologist. (This is his fourth urologist in as many states.) The urologist said the mass is likely TC and he was concerned it had spread to my husbands prostate and lymph nodes because they were swollen. He checked off a lot of boxes that were concerning to the urologist- low back pain, night sweats, joint pain, headaches. He sent my husband home and said his office would contact him to schedule a scan (husband is not sure if it is a CT or MRI.) he finally gets a call from imaging center 5 days later, saying they cannot get him in until the next week. My husband decides it can wait until after we get back from a visit to see family the week after. This is very disturbing and worrying to me. I beg him to call the urologist and make sure he knows the scan is being delayed this long. My husband calls and is told that is fine. The scan can wait. Does this seem strange?? In the meantime, I have convinced my husband to get a second opinion with the testicular cancer center at the Univ of Iowa. We are waiting for an appointment. My husband still plans on going to visit family next week and putting everything on hold until we return. He prefers to ignore things as long as possible while my anxiety is literally making me break out in hives. I am nervous that he has been told 1) he has cancer that has likely spread but 2) there is no hurry to do anything about it. I am also puzzled because nothing I have read references TC spreading to the prostate. Yesterday my husband was told by his GPs nurse (Not the urologist) his blood work came back and everything looks normal- the prostate and lymph nodes are maybe inflamed for a different reason other than metastasized cancer. Sorry, but from what I have read, you cannot say this cancer has spread or not by simply looking at bloodwork, right? If anyone can shed light onto this crazy business, and hopefully quell my fears that my husband has possibly been brewing TC for the last four years, I would be so appreciative!

  • #2
    The situation definitely seems a little weird over the years and doctors and different opinions, US results, biopsy, etc.

    Did they mention if they had checked tumor markers with the labs? AFP, beta-hCG and LDH are the markers.

    Given the long history and unless he has elevated markers of concern or having any systemic symptoms outside of the testicular pain, then I suppose waiting two weeks for the CT isn't that big of a deal. Maybe you can just convince him to go in next week for the CT and then dela with the results once you get back from the family visit?

    MIke
    Oct. 2005 felt lump but waited over 7 months.
    06.15.06 "You have Cancer"
    06.26.06 Left I/O
    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
    06.30.06 It's Official - Stage I Seminoma
    Surveillance...
    Founded the Testicular Cancer Society
    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

    Comment


    • #3
      WOW, ellsee,
      There's a lot going on here & I probably will only touch on some of it.
      My first concern is *why* did they give him anabolic steroids & what did they give him? This sounds like an experiment by the military to boost performance.

      My second concern is "are these all VA docs he's been seeing?" How much TC experience do any of his docs have? It does make a difference.
      I can't help you deal with your husband's attitude to this, but from what other veterans have posted here, the VA normally is pretty aggressive with suspected TC. It is not an assurance, but if they are not worried in your husband's case, it might be because they haven't seen a real reason to be. Unfortunately, it could also be him refusing treatment, & not telling you, so no way to know for sure.

      Third: When is your appt with UOI? Soon I Hope.

      Forth: I've never heard of TC going to the prostrate, another indication that his docs are clueless.

      And no, blood-work can indicate that TC is present but cannot indicate it is not, conclusively. If it was previously elevated and has dropped, that is a good indicator, but low numbers that have never been high tell us nothing useful...

      Dave
      Last edited by Davepet; 07-13-18, 01:18 AM.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #4
        I forgot to mention as well. Testicular cancer spreading to the prostate is extremely rare with only a handful of cases ever reported to my knowledge.

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

        Comment


        • #5
          I haven’t seen the most recent bloodwork results and my husband did not ask about any tumor markers. So far, I can only go off what he tells me. He does not ask the questions I would ask, and I’m trying to be patient and understanding about how he deals with this- it’s his body, not mine. He is not seeing VA doctors. I am concerned his urologists are perhaps inexperienced with TC, as they have mostly been in small, rural towns and I can’t imagine they could have had many TC patients, hence the second opinion at Uof IA. That appointment has not been scheduled. We are waiting on all records to be sent there. The waiting is going to drive me bonkers. I’m glad to hear it doesn’t typically spread to the prostate! Thanks for the insight and responses.

          Comment


          • #6
            Originally posted by ellsee View Post
            He does not ask the questions I would ask, and I’m trying to be patient and understanding about how he deals with this- it’s his body, not mine.
            As a navy seal, he has likely been trained to ignore pain & adversity, & maybe even see any inability to do so as a weakness to be avoided. That may help him survive battlefield situations, but it is a detriment in surviving cancer. He's been trained to ignore his needs so the team can survive. When it comes to advocating for himself, he's basically handicapped & needs someone to do that for him, even though he will never be able to admit that. He needs your help even though he will reject the notion.You may have to be forceful about this.


            Originally posted by ellsee View Post
            He is not seeing VA doctors. I am concerned his urologists are perhaps inexperienced with TC, as they have mostly been in small, rural towns and I can’t imagine they could have had many TC patients, hence the second opinion at Uof IA.
            Is there a reason for not seeing VA docs? Does he have comprehensive health insurance through a work plan?

            Originally posted by ellsee View Post
            That appointment has not been scheduled. We are waiting on all records to be sent there. The waiting is going to drive me bonkers. I’m glad to hear it doesn’t typically spread to the prostate! Thanks for the insight and responses.
            What is the delay on the record? These days it's just a few keyboard strokes & it's done...

            Dave
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              After i went thru 3xBEP thur tricare and that goat rope, i actually had the VA continue my care and they did an amazing job. More than likely they will fee base out your care. But i will say is that they will and contact Dr Einhorn about TC cancer. The VA hospital in Indiana has TC doctors who do rotations from Dr E's office, so i strongly suggest having the VA help also.
              I understand your husbands bull headedness. If need be have him reach out to this retired EOD 1sgt.
              As Dave and Mike pretty much covered the main points. Just keep on him, cause i was the same way and ignored the pain and signs etc... But i will be more than happy to help anyway i can.
              Turn around time on reports with the VA is less than 24 hours, blood work, CT, PET and mri results. Usually the VA can get you a PET SCAN or a CT done smae day or next day depending on the reason. Im not saying tje VA does everything great, but they do understand the importance and urgency when dealing with cancer.
              Last edited by eodtech2001; 07-13-18, 09:13 AM.
              Jan 2012- U/S mass in Left testicle
              Feb 2012- I/O performed to remove cancer
              Mar 1,2012- pathology pure seminoma
              Mar 7, 2012 PET SCAN stage IIa
              April 2012 Mayo clinic carbolite.
              May 2012 carbolite failed, started BEP x3
              August 7th 2012- BEP complete
              April 2013 CT/PET show relapse
              May 2013 RPLND
              Aug 2013 Relapse again Started VIeP x2
              Oct 2013 HDC AUTOLOGOUS
              Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
              Feb 2014 confirmed false positive all clear FINALLY !
              Jan 2015 1 year cancer free Pet/CT scan
              Jan 2016 2 years cancer free "Pet/CT scan
              Jan 2017 3 years cancer free "Pet/CT scan
              Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

              Comment


              • #8
                Davepet, I think you nailed it. This is the coping mechanism that he is used to. Small victory this morning- he agreed to put me on his file so I can talk to doctors and receive results, appt info, etc.

                Comment


                • #9
                  Wow! Moving forward- have your husband obtain COPIES of all testing, office visits, labs, etc. So sorry you are still in limbo, hopefully your husband will be able to see someone with TC experience. I would ask him to let you accompany him, take notes, ask questions. You are spouse and want to help.
                  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.

                  Comment

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