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  • Seminoma relapse

    Hello, this is my first post here. I was diagnosed in November, 2016 with testicular cancer and had an orchiectomy to remove the tumor. It was determined to be seminoma pt1 and all my tumormarkers went back to normal after the surgery so I was put on surveillance. I went for check ups twice in total since then, once in May this year and everything was clear but my at my latest appointment at the end of October I had elevated AFP (1091) and HCG (10). This came as a shock to me as the doctors seemed confident that I'd be alright (and I mean, the first thing the doctor said after looking at my results was "F*ck!" which was highly reassuring), plus the AFP seems insanely high to me. CT scan revealed a 37x53mm tumor between the vena cava inferior and the aorta in a retroperitoneal lymph node and that the left lobe of my liver is enlarged. I'm worried it may have spread to my liver and I've read that a 5cm tumor is pretty large. Things have been progressing very slowly I feel like since it will have been a total of 2 weeks since the CT was ordered and me being able to discuss it with my doctor tomorrow so I'm just kind of venting my frustrations here. I've also read that the presence of AFP means that it can't be a pure seminoma and I had elevated AFP even last year but the doctors didn't really mention anything about that. Is that normal?

  • #2
    Well it could mean you have yolk sac some where in the mix. I know it sounds grim hearing you relasped, but even with relapse you still are doing better than you think. If you look at my history you will see i was sucking Ass for awhile.
    What i am trying to say is you will be in good hands. I had spots in my liver and my lung same as you plus a tumor wrapping around the blood supply to my kidney. This was after a relapse from rplnd. But ViEP melted everything away.
    Just try and stay as calm and try and keep thecdoom and gloom thoughte to a litte as you can. Have faith my friend
    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

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    • #3
      Thanks for the reassurances, I'm mostly through with the panicking by now, it's just that I want to start treatment as soon as possible and things being this slow is kind of frustrating for me. Also, they didn't actually find spots on my liver, the report says it's "homogeneous in structure with no discernable lesions" (translating from Hungarian so it may be inaccurate) but that the "left lobe is enlarged and reaches the spleen's contour". So could that be unrelated? I've also got no clue how much bigger that's supposed to be than normal.
      Also, way to go, I'm glad you're doing better now!

      Comment


      • #4
        There a few things concerning here, first your AFP was elevated, but they diagnosed pure seminoma? Your docs should have known that was wrong.

        Second, you should ave had more than two surveillance visits in a years time. This mass could have been caught much earlier. While catching it later won't affect treatment or the likelihood of a cure, earlier is always better.

        The enlarged liver seems a bit odd especially since liver problems can cause a rise in AFP, from the Testicular Cancer Resource Center dictionary:

        Alpha-fetoprotein - AFP is a protein found in the bloodstream of some men with nonseminomatous testicular cancer (It is NEVER present in seminoma patients). The level rises when the cancer is growing and falls when the cancer is shrinking or has been surgically removed, so a blood test can possibly measure the progress of the disease and success of treatment. Because of this behavior, it is referred to as a tumor marker. Elevated levels of AFP occur in 75 per cent of patients with teratocarcinoma, embryonal cell carcinoma, and yolk sac carcinoma. (However, increased levels of AFP are also found in patients with liver diseases, such as cirrhosis, acute and chronic hepatitis and hepatic necrosis. ) The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

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        • #5
          I think itís very concerning your surveillance appointments where so far apart. Iíve just finished treatment and I am on monthly appointments for the first 6 months then bi-monthly for the next 6. Try not to worry about your AFP mine was 19000 and Iím still here 😉.

          Chemo for testicular cancer is very very effective, itís not great at the time but you will get through it 👍🏻

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          • #6
            That does sound very strange!! But even if it was misdiagnosed, either way (seminoma or not), your chances of chemo killing are incredibly good. Scary, I know - I thought the tests after orchiectomy were a formality, but the reality can be different... Hope your oncologist can shed some light onto what happened!

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            • #7
              Sorry to hear what ur going through. I was diagnosed with pure seminoma end of oct 2017. I started chemo yesterday cuz im stage IIb.

              If u was stage Ib with pure seminoma and just had a relapse, from what I have been reading on heat and other sites everyone else in ur similar situation a good majority have relapses. Which beckons the question why the hell not just put them through chemo. But Iím not a doctor or a scientist.

              Keep ur head up. TC is very treatable and it seems urs is still early stages.

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              • #8
                Saw my urologist today, he was confident chemo is gonna get rid of this tumor so that's good. Meeting with oncologists on Friday. He also didn't seem concerned with the liver and I forgot to ask so I'll have to remember to bring it up at oncology. Thanks for the encouragement, everyone!

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                • #9
                  Originally posted by spence21 View Post
                  If u was stage Ib with pure seminoma and just had a relapse, from what I have been reading on heat and other sites everyone else in ur similar situation a good majority have relapses. Which beckons the question why the hell not just put them through chemo. But I’m not a doctor or a scientist.
                  Generally if someone doesn't relapse they probably will forget about the forum after a while and never post again. So this forum definitely is biased towards those requiring further treatment.
                  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


                  • #10
                    So sorry to hear of your relapse. Have they repeated the AFP just to make sure that it wasn't a lab error? Then again if your AFP was elevated previously then the odds of a lab error are unlikely I suppose and even if it was totally normal the CT is indicating that there is an issue. With an elevated AFP though you have to consider the pathology as a nonseminoma, despite the fact that the pathology results came back as seminoma. With the AFP of over a thousand you may be over the border of needing BEPx4 instead of BEPx3. I would certainly ask your oncologist what they think the plan should be.

                    I am glad to hear that they are not concerned about liver involvement but that is another thing to discuss with the oncologist as well.

                    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

                    Comment


                    • #11
                      They have not repeated the AFP but yeah, CT is showing a tumor and my HCG was also elevated so I doubt it was a lab error, unfortunately.

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                      • #12
                        DELIVERATOR~ Sorry you will have to have chemo now. Hopefully, your Oncologist will answers questions. With elevated AFP before and now you likely nonseminoma.
                        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.
                        Grant is enjoying his senior year in High School Cancer Free!

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                        • #13
                          I've got a little update, saw my oncologist today at the local hospital, they also weren't concerned about the liver so that's great.
                          They're also sending me to the National Institute of Oncology in Budapest which as far as I'm aware is the best in Hungary so I'm pretty happy about that.
                          Doctor said I'll be cured which was good to hear. Fairly good day today.

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                          • #14
                            That is great to hear that they are not concerned about the liver as that makes things much easier. I just had a thought too and not sure why I didn't think about it earlier. I wonder if there is some kind of issue in the liver (with it being enlarged), if that would be affecting the AFP levels? Even if it was, I am not sure it would push the levels to over 1000 but it is at least something that you can ask the doctors in Budapest. Regardless, the tumor is there so treatments are needed but it just got me thinking.

                            I am glad that they are referring you to Budapest and you will have to keep us posted on how things go there.

                            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

                            Comment


                            • #15
                              Yeah, I definitely won't let the liver issue drop as something is obviously wrong there, but for now they just want to put me on chemo asap.

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