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  • I can't believe this, do I am idiot ?

    Today I had the report of the PARTIAL orchiectomy: Mixed germ tumor: 95% embryonal carcinoma, mature teratoma 5%, size 1.6 cm x 1.2 cm.
    Stage pT1 nX M0,

    two years ago I had a TOTAL orchiectomy in my left, and it was a seminoma with retetestis invasion, two sessions of chemo carboplatin with weeks of distance.

    This is what the oncologist says:

    You have to do radiotherapy: and now what worries me: means i will lose testosterone. And now I am asking me: to do this thing, is the same to have a total orchiectomy with a prosthesis, than a died testicle...
    This, by words of the oncologist: it is for two reasons: to stop the 80, 90% of a new tumor and to stop a potential ''maybe possible'' tumor inguinal (lymphatic??) ganglions.
    Guys, I need your opinions and help again please, a lot of you, are an expert, and I need a professional than can give me other options.
    I want my testicle and testosterone, I don't want this thing guys.
    Maybe other DR can have another plan.


    thank you a lot

  • #2
    Cancer is serious. You need to take it seriously. There's no bargaining here. You treat it. If you need a total orch., you cut it out. If you need chemo, you do chemo. We're here to support you, but you have to treat this head on. I wish you the best. I'm sure it'll be okay.

    Best,
    Uno
    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
    12/8/16 Diagnosed with TC in left testicle.
    12/9/16 Left I/O.
    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
    2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

    Comment


    • #3
      You'll need to be properly staged before doing any treatment. Chest, abdomen and pelvic ct scan and tumor markers should be done next. In any case I would highly advise against radiation with the high percentage of embryonal. It is quick to spread elsewhere and radiation may be a wasted treatment.
      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!

      Comment


      • #4
        Testosterone treatment might sound scary but it really isn't that big of a deal. Many of us are on it. I'm on injections, I pretty much forget all about TC and my testosterone levels for months at a time. My injections are every 10 weeks.
        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
        7/7/15: bHCG 56, AFP 42, LDH 322
        7/13/15 - 9/18/15: 4xEP
        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
        4/20/16: RPLND @ IU - teratoma only!
        9/18/2017 all clears up to this date!

        Comment


        • #5
          Private'
          Like others say, TRT works. I've been on it for almost 7 years now (lost second in March 2010), and can happily say that everything works as normal. Unlike biwi, I've been on daily gel treatment since day one. And no negative issues to report at all.

          Jan 2009: RHS (Seminoma) & RT
          Mar 2010: LHS (Embryonal Carcinoma)
          Sep 2010: Relapse & 3 x BEP
          Mar 2015: Five years "nut free"
          http://doublezeroami.blogspot.com

          Comment


          • #6
            I do know that radiation can kill sperm production, which is why they shield them even with dental xrays, but I cannot recall reading anything about T production. Does anyone have good info on that?

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

            Comment


            • #7
              Originally posted by Davepet View Post
              I do know that radiation can kill sperm production, which is why they shield them even with dental xrays, but I cannot recall reading anything about T production. Does anyone have good info on that?

              Dave

              Dave my oncologist said you won't have T, and Lawrence H. said if is in a low dos a 40% won't need, but i don't know if he refers from the testicle

              Comment


              • #8
                Originally posted by privateuser View Post
                Today I had the report of the PARTIAL orchiectomy: Mixed germ tumor: 95% embryonal carcinoma, mature teratoma 5%, size 1.6 cm x 1.2 cm.
                Stage pT1 nX M0,

                two years ago I had a TOTAL orchiectomy in my left, and it was a seminoma with retetestis invasion, two sessions of chemo carboplatin with weeks of distance.

                This is what the oncologist says:

                You have to do radiotherapy: and now what worries me: means i will lose testosterone. And now I am asking me: to do this thing, is the same to have a total orchiectomy with a prosthesis, than a died testicle...
                This, by words of the oncologist: it is for two reasons: to stop the 80, 90% of a new tumor and to stop a potential ''maybe possible'' tumor inguinal (lymphatic??) ganglions.
                Guys, I need your opinions and help again please, a lot of you, are an expert, and I need a professional than can give me other options.
                I want my testicle and testosterone, I don't want this thing guys.
                Maybe other DR can have another plan.


                thank you a lot


                I have I/O for my right testis one month ago.it is 100% embryonal carcinoma. At the same time my left testis also has a 6mm suspected tumor. The doctor did not allow me to do a partial orchiectomy. How come you can do a PARTIAL Orchiectomy?

                Currently my doctor suggest me to wait and see the left testis. If the tumor size increased from 6mm to 1cm, he would recommend me to do 2 cycles of BEP cheomotherapy. Although the drug of BEP is hard to be absorbed by the testis, it can control the tumor size. It may make tumor disappear.
                30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

                24/01/17 Right I/O
                (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

                14/02/17 AFP 2<7, 6mm on left testis
                17/02/17 Survelliance
                06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

                28/07/17 AFP 35 (normal 7), relapsed confirmed
                04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
                10/08/17 Start 3 BEP, AFP201 (normal 7)
                06/10/17 End of 3 BEP, AFP3 (normal7)
                17/10/17 CT scan
                27/10/17 Prev left para-aortic lymph node not seen. AFP2(normal 7), B-HCG <2, LDH 208( normal 118-220)

                Comment


                • #9
                  Originally posted by Joe.shupe22 View Post
                  You'll need to be properly staged before doing any treatment. Chest, abdomen and pelvic ct scan and tumor markers should be done next. In any case I would highly advise against radiation with the high percentage of embryonal. It is quick to spread elsewhere and radiation may be a wasted treatment.
                  Agree, high percentage of EC should treat with BEP chemotherapy instead of radiation.

                  30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

                  24/01/17 Right I/O
                  (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

                  14/02/17 AFP 2<7, 6mm on left testis
                  17/02/17 Survelliance
                  06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

                  28/07/17 AFP 35 (normal 7), relapsed confirmed
                  04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
                  10/08/17 Start 3 BEP, AFP201 (normal 7)
                  06/10/17 End of 3 BEP, AFP3 (normal7)
                  17/10/17 CT scan
                  27/10/17 Prev left para-aortic lymph node not seen. AFP2(normal 7), B-HCG <2, LDH 208( normal 118-220)

                  Comment


                  • #10
                    My Son Battled Testicular Cancer at age 18,22 and 24. He didnt make it. He passed 7/3/16. My advice, is to get a second opinion,and a third, if need be. Not certain where you reside, but seek the best center possible, and NOT a research facility! Also, I would check into if there were a big shift in personnel, because that- I believe played a part in him passing. Should I have been able to foresee any of this, that would be my suggestion. But not to delay!

                    Comment


                    • #11
                      I'm so sorry for your loss. Truly heartbreaking. I hope you don't mind me asking, but what stage was he when diagnosed?
                      9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2017.

                      Comment


                      • #12
                        at stage two B. He was type one diabetic, and had a respiratory history. His last round was Bleomycin. He drove himself on memorial day for his check up, and had a pleural effusion and fluid around the lungs. They sent him home. No observation, no nothing.....I didnt know any of this until after he was diagnosed with Bleomycin Toxicity, then Alveolitis-but Bleo should never be given to anyone that has had hx of asthma, which my son did. The doctors that performed an ECMO and various other heroic efforts, tipped me off that there was an "agent" that could have stopped the Bleomycin from attacking his lungs.... I looked at the Mayo Clinics site, and confirmed just that. Actually, a different triad of chemo should have been given to him, but it is more expensive....and by then, he was on Medicaid. Guess they wanted to get home for the rest of the holiday.

                        Comment


                        • #13
                          I'm so sorry to hear he had Bleo toxicity. You are correct. A history of respiratory issues should have been offered EP x 4. Before my son had his BEP x 3, he had to have a pulmonary function test to check his lungs and breathing. And he never had a history of respiratory issues.It is very disheartening to hear this and there's nothing I can say but I am truly sorry you and your family went through this.
                          9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2017.

                          Comment


                          • #14
                            Originally posted by JakesMom View Post
                            My Son Battled Testicular Cancer at age 18,22 and 24. He didnt make it. He passed 7/3/16.
                            Somehow I missed that you were new here, JakesMom. So sorry your son lost his battle & more than a little PO'd that it wasn't the cancer that did him in, but the treatment. If his asthma was on his record, there is no excuse for giving him bleo, IMHO. Did they do a lung function test prior to treatment?

                            Also you indicate he had TC at 18, 22, & 24. Were the last two recurrences from the first or was one a new primary? Not that it really matters, but we tend to be a bit curious about these things , you never know which tidbit of info might prove useful in the future.

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

                            Comment


                            • #15
                              First and third were seminoma/teratoma. The one at age 22 was a germ cell tumor. I know his oncologist had in his medical records, that he had a history of asthma, because i was there for the first two bouts. the last one, he wanted to 'handle on his own'. in his honor, that is why in part i joined here, because no young man should EVER do this on their own. no one person with any type of cancer should be alone. For some reason, that stigma of 'mannin up' carries over into this? nope. wrong answer.

                              Comment

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