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  • New member- Girlfriend

    Hello everyone!
    Unbeknownst to you all you have been a great support to me during this difficult times, so thank you for that!

    A little bit of background my boyfriend has had a mass on his right testicle that was causing pain and discomfort and wouldn't go away. He went to a hospital and after a sonogram, ct scans and blood work, they send him home with a epidimidytis misdiagnosis the discharge instructions said to "ice area" and take an OTC pain reliever that it should go away with antibiotics. They didn't give him any scripts only a paper with an urologist office contact. I should mention he doesnt have health insurance.
    Fastfoward to july 10 pain wouldn't go away and he was suspicious of that first diagnosis so he wanted a second opinion. The second hospital did the same but right away told him anytime there's a suspicious palpable mass in the testicle orchiectomy is the way to go, and surgery was scheduled for the next morning.
    Now we are almost 3 weeks postop, surgery was successful, no lymphnodes were removed, ct scans look clear except for some inconclusive shadow on pancreas fat or calcium?. Tumor markers are within range (AFP: 1.9 nanograms/mL, Beta HCG: <2.4mlU/mL, LDH: 419 unit/L) And last Thursday we got the pathology report 'read' Pure Seminoma, 3cm in largest dimension. Tumor invades into hilar adipose tissue. Negative for angiolymphatic invasion.
    Resection margins are negative for tumor. AJCC Classification : pT2 Nx Mn/a Spermatic cord margin: uninvolved by tumor. Lymphovascular invasion: not identified. Regional lymph nodes: no lymph nodes submitted or found. Pathologic stage classification.Primary Tumor (pT) p T2 : tumor limited to the testis (including rete testis invasion) with lymphatic invasion OR tumor invading hilar soft tissue or epididymis or penetrating visceral mesothelial layer covering the external surface of tunica albuginea with or without lymphovascular invasion.I had questions about the pathology report that the doctor couldn't/wouldn't answer...he kept going back to "if you had stage 1" "in stage one..." "you should really ask the oncologists about this" I was disappointed with the lack of anwsers and I wish they had scheduled the appointment with the oncologist from the get go but maybe its misdirected anger..idk I just feel like he had a rehearsed oversimplified speech and only read the pathology report briefly in front of us. Its a teaching hospital. Anyways I had a pathologist translate the report for me and she clarified the staging and suggested a PET scan and said the tumor markers are not expected to change postop.
    I just have a lot of questions about treatment and I'm very hesitant about survalance only. Any insights you guys can give me is greatly appreciated.
    Obviously all the information shared I was given permission to share..lol he doesnt participate in the forum, but I know he started to read posts here and there.
    Thank you for your time
    Last edited by Vye18; 07-30-17, 11:53 AM. Reason: switched over to desktop

  • #2
    Sorry to welcome you to the club. Here is a readable guideline from the European Association of Urology.

    https://uroweb.org/wp-content/upload...er-2015-v2.pdf
    Age 31 - Portland, OR
    01NOV16- Pain in right testicle, palpable mass
    13NOV16- R I/O. Markers normal
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    06DEC16 - CT scan clear
    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
    03JAN17- Ended 1xBEP; start surveillance
    18MAR17-2nd pathology report shows 90% EC , 10% seminoma

    Comment


    • #3
      If I'm understanding you correctly, it sounds like surveillance would be his best option, anything else would likely be over-treatment.The odds are good he is already cured. Surveillance will catch any recurrence in plenty of time to treat it.

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

      Comment


      • #4
        If I understand correctly your bf has clinical stage 1 disease (no metastasis beyond testis) and purely seminoma.

        May I ask how old he is and what country/region you live? Ask the oncologist how confident they are in the pathologist and report.

        Active surveillance seems like a valid approach since a relapse, should it occur, can be caught and treated. Adjuvant treatment (radiation therapy or carboplatin chemotherapy) is not risk free and signing up for it may , on average, be overtreatment. How does the insurance issue affect your ability to get advanced care, should the need arise, for example is something to consider.

        The studies in the European urology association guideline (see section 7.2) suggest a relapse rate of 15-20% over 5 year time for stage 1 seminoma. They reccomend active surveillance assuming adequate facilities and patient compliance.
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        06DEC16 - CT scan clear
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

        Comment


        • #5
          Mcintoda thank you so much for the PDF! I was beyond confused with the classification of the tumor being a 2 and the stage thank you for providing me with all this invaluable information!

          On to your other post he is 36yrs old and we live in the US, florida specifically.
          And yes one of the concerning aspects of all of this is the lack of health insurance. He attempted to get insurance in the market place and it was too expensive. Now we are trying to figure out what to do in that regard. Patient compliance its another issue, he has been dealing with the pain and discomfort for longer than either of us are willing to admit on here. Its created tension in our relationship and its definitely something I feel guilty about for not pressing harder. I've shared my concerns with him about the importance of adherence in active surveillance should we go on that route.
          Thank you again!

          Comment


          • #6
            Dave thank you!
            We were so worried and confused specially because the doctor wasn't very clear with us on the pathology or course of treatment in fact he keep referring to stage one being essentially cured by surgery but telling us for stage two we would need to see the oncologist for treatment options whether we choose chemo or surveillance. Every single question was answered with something along the lines of "its not my area of expertise".

            Comment


            • #7
              sorry for the delayed response I don't seem to be able to post replies from my phone or at work. Thank you both for your time!

              Comment


              • #8
                Hi Vye

                Has he had a CT scan done to check his lymph nodes in the chest and abdominal region? It is very odd if he hasn't because until that is done how will you know if it has gone elsewhere? Wouldn't be a bad idea to make an appointment with an oncologist that specializes in genitourinary cancers and ask them any questions you have. As far as Urologists go very few of them see Testicular cancer in their careers since it is a very rare cancer.

                On a lighter note (being said in humor, assuming your sense of it hasn't vanished) don't be too hard on him about not seeing another doctor sooner, men and their balls have been together for quite some time and its a mind **** to imagine being parted from one of them. :P

                Good luck!

                Comment


                • #9
                  I concur with Daniel's post.
                  17 year old Grant dx 12/21/16
                  pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                  pre/o CT Scan 12/22/16 normal
                  r/o 12/22/16
                  Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                  PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                  -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                  2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                  BEP x 3 1/27/17
                  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: pathlogy Teratoma , 3 large masses removed

                  Comment


                  • #10
                    Daniel and Trekga thank you. Yes Im trying not to be too hard on him this is incredibly difficult and isolating. But Im proud of him, he is finally opening up to people. I know he leans on me for emotional support but its always good to process things w/o thinking youre gonna hurt your s/o feelings, sometimes I feel like he shys away from the raw feelings so that I dont stress out.
                    In regards to the ct scans everything from my understanding is clear.

                    Comment


                    • #11
                      How are things this week? The emotional side of cancer is different for everyone, men especially tend to hold things in, but hopefully eventually they will open up.
                      17 year old Grant dx 12/21/16
                      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                      pre/o CT Scan 12/22/16 normal
                      r/o 12/22/16
                      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                      BEP x 3 1/27/17
                      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: pathlogy Teratoma , 3 large masses removed

                      Comment


                      • #12
                        Its been rough... he has had anger outbursts, depressive outbursts and even suicidal thoughts. Its a lot to deal with specially with the fact that he's uninsured and all the financial stress and pressure this brings.
                        Ive asked him to talk to people, join the forum I even asked him to text a crisis help line but he doesnt want to. He says he has his own way of dealing w things. He went back to work a week early and that seem to help but when he is home alone or when he is reminded of the surgery his mental and emotional state deteriorates. I dont know what to do. I really dont know. I asked him if he wants to go to therapy or even online therapy just to vent talk to people and again he says he has his own way of dealing with things. The truth is we are both pretty isolated even though I have my immidiate family who has helped tremendously I feel like he has very little support. We dont have many friends and he doesnt want to tell people either which I completely support and understand its just hard to deal with. The people ive shared with mostly at work all tell me to stay positive, "its one of the best cancers" "we are lucky it didnt spread" etc and then reading in the forum about people that go thru much harder complications and more advance stages makes me feel like we shouldn't be taking this so hard. But it is f***ing hard. And I just dont know how to help him.. Im thinking of telling one of the doctors in the next appointment to prescribe antidepressants but Im also concerned about antidepressants exacerbating suicidal ideation but without a support system and him resisting to reach out to an outside support what other choice do I have? Ufff that was a lot!
                        ​Thanks for asking Trekga!

                        Comment


                        • #13
                          This disease affects people differently, some bounce back easily & others struggle. From what you are saying I don't think there is much you actually can do except try to be there for him when he needs you. Getting him into therapy won't help unless he's willing to participate & it doesn't sound like he would.

                          Consider getting some help yourself to perhaps make it easier to deal with his moods?

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

                          Comment


                          • #14
                            Dave,
                            Some days are harder than others. Im learning to be supportive while also giving him the space he needs to deal with things.

                            Comment


                            • #15
                              Hang in there. It helps like Dave suggested to have an outlet- either fitness activity or talking to someone yourself. Cancer does effect caregivers too.
                              17 year old Grant dx 12/21/16
                              pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                              pre/o CT Scan 12/22/16 normal
                              r/o 12/22/16
                              Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                              PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                              -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                              2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                              BEP x 3 1/27/17
                              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: pathlogy Teratoma , 3 large masses removed

                              Comment

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