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NSTC, post O/l four months, HCG elevated

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  • NSTC, post O/l four months, HCG elevated

    Hello everyone,

    I have been read this form for four months. I am a 24 years old boy’s mother. My son was diagnosed on 25th May left NSTC,and surgery was performed on 28th May.

    Histology is: 50% EC, 30% Teratoma, 20% sac yolk from IU. Stage 1. suspicious nodes 2mm in lung and 7mm in rental vein.

    Both doctors from IU and Mayo suggested surveillance, we took it, blood work was good in August, and now come the first CT scan in Mayo Clinic.

    Now we got the report:HCG is 5.6, in July was < 0.5, AFP is normal. LDH always normal. CT scan report isn’t coming.

    I want to ask a favor, does that mean my son is recurrence? Or his stage in the beginning is wrong? Can anyone give me some thoughts?i really appreciate!

    He is a student study in Florida. Is it a good idea that if it is recurrence, we take chemo treatment in Orlando?

    I noticed there is the most helpful forum for TC patient in the world, I can not say how much pain in my heart now, and I am now is far away to my son.

    Any information will be highly appreciated.

    Sorry for my English, it is not my mother language...

    Best Regards

    Ran’s mother

  • #2
    If he needs chemo i would look at moffit davis in tampa before orlando. Or Mayo clinic in jacksonville
    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


    • #3
      I am assuming that your son was going to Mayo in Jacksonville?

      The results of the CT scan are going to be of greatest importance to see if there is any spread. If the CT scans look stable compared to the previous one, then I am not sure I would be too worried about the b-hCG of 5.6 (It could be due to low testosterone levels, variations or even errors in lab testing). The b-hCG could always be repeated to make sure that it isn't an error.

      Definitely let us know what the CT scan says and without definitive evidence on the CT or a continuous and larger rise in b-hCG, then I personally rush into any treatments.

      If your son is in Orlando and needs a local oncologist, then I would reach out to Dr. Molthrop https://www.flcancer.com/en/physicia...c-molthrop-md/

      I know of other patients that have seen Dr. Molthrop, he has been recommended by Dr. Einhorn before as well and he should be more than capable to administer standard chemotherapy for testicular cancer.

      Let us know what you find out about the CT scan.

      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


      • #4
        Hi eodtech2001
        Hi Mike

        Many thanks for your advices.

        Definitely I will update you about CT reports.

        Is this often that relapse happens after surgery four months? And only hcg elevated? My son was AFP elevated even more times than hcg elevated pre orchiectomy. Which histology TC causes relapse only hcg elevated? Anyone has the same experience?

        I saw here many people beated TC or beating TC, your stories give me lot of confidence to fight.

        Now I am in fear but I must face it. Could you give me some words , experience, advice and suggestion when you read it?

        Thank you for your time!

        BR

        Ryan’s mother

        Comment


        • #5
          Without evidence on imaging studies (the CT scan for example) then a beta-hCG level of 5.6 in itself is not that concerning. I would not get too worried until the CT results come back or the beta-hCG rises dramatically. Again, it could just be a lab variation or error. I would certainly want my son to follow up about it but would not be overly concerned about a relapse with the lab alone.

          If he is at Mayo in Rochester, then perhaps he is seeing Dr. Leibovich or Dr. Costello as they are more than capable to assess for any relapse.

          Keep us posted.

          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


          • #6
            As others have said, the CT scan and repeated HCG will be telling. I understand you are worried. Keep us updated.
            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


            • #7
              Here comes the CT report, all is clear, nothing changed.

              Bhcg reference level is 2.5 in Mayo. The doctor said that hcg elevated could be two possibilities: one is low testosterone, one is early relapse. Currently my son got one time testosterone injection ,his Lh is normal. He will be retested bhcg next week. So far no early evidence from imaging support relapse.

              Let’s see what will happen next week. I am happy that there is nothing in CT. But could it be possible that something is growing up in bone and brain?

              Still hoping all of you give me your thoughts!

              Many thanks Mike and Tregka, both of you were really right!

              BRs

              Amy, Ryan’s mum

              Comment


              • #8
                Bone or brain metastasis is highly unlikely. Generally those only happen in very advanced cases.
                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!
                9/27/2018 all clears up to this date!

                Comment


                • #9
                  Mike,
                  You mentioned in your post that b-HGC levels could be the result of low testosterone. Could you explain? As I posted in another thread, I've had a very minor increase to my bHGC levels since surgery. If it happens again, or continues a trend, I'm wondering if I shouldn't request my doctor to start monitoring my testosterone levels.

                  Thanks for the info,
                  John
                  6/4/18 BHCG 452, AFP 1
                  6/13/18 CT Scan, no involvement beyond left testicle
                  6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
                  6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
                  7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
                  7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
                  8/27/18 Chest CT Scan clear
                  9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
                  9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
                  11/19/18 Next blood test
                  11/23/18 Next CT Scan
                  11/30/18 follow up with oncologist

                  Comment


                  • #10
                    Here is what the Testicular Cancer Resource Center dictionary has to say abour hcg, note the last sentence:
                    Human Chorionic Gonadotropin (hCG), beta subunit - In adults, significant elevation of levels of beta HCG occurs only during pregnancy and in patients with trophoblastic neoplasms or nonseminomatous germ cell tumors. As a result, it is used as a tumor marker. Essentially, 100 per cent of patients with trophoblastic tumors and 40-60 per cent of patients with nonseminomatous germ cell tumors, including all patients with choriocarcinoma, 80% of patients with embryonal carcinoma, and 10-25% of patients with pure seminoma are diagnosed with elevated levels of beta HCG. The serum half life of beta hCG is 24 to 36 hours, which implies that elevated concentrations should return to normal within 5 to 7.5 days after surgery if all tumor is removed. Please note that the normal HCG level is usually less than 5 miu/ml. Also note that the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone or because of marijuana use.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      Hi Davepet,

                      Thanks for your information sharing. It is very helpful at this moment!

                      My son did not take marijuana, I really hope this bhcg
                      incressing is only a false positive (but from Mayo Clinic, the possibility will be not too high, isn’t it?). I also hope the low testosterone is the reason,. Anyhow, when it is relapse, we have to face the nightmare.

                      I will try to be strong like everyone in this forum.

                      I hope everyone in this forum can get rid of this disease, and back to healthy again!

                      BRs

                      Amy, Ryan’s mumm

                      Comment


                      • #12
                        Originally posted by johnm620 View Post
                        Mike,
                        You mentioned in your post that b-HGC levels could be the result of low testosterone. Could you explain? As I posted in another thread, I've had a very minor increase to my bHGC levels since surgery. If it happens again, or continues a trend, I'm wondering if I shouldn't request my doctor to start monitoring my testosterone levels.

                        Thanks for the info,
                        John

                        Hi John,

                        Basically, low testosterone can cause an elevation in Lutetinizing Hormone (LH) which may cross react with beta-hCG testing as can heterophilic antibodies. Here is an old case report/leter to the editor that describes things a bit: http://clinchem.aaccjnls.org/content/53/8/1560

                        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


                        • #13
                          It is so bad, this week my son has blood work again, bhcg is more higher than last week: 5.6 to 6.9.

                          Seems the relapse is true. Is there anyone can give me some thoughts regarding below questions?

                          1 he had L I/O 28th May, stage 1 no LV. the fourth month relapse indicated any bad prognosis?

                          2 will he be restaged with this relapse?

                          3 what should we do next steps? He will graduate on December if it isn’t relapse, what is the lastest time window stating BEPx3? Possible after graduation?

                          My heart is broken.

                          Many thanks for your advice!

                          BRs

                          Amy,Ryan’s mumm

                          Comment


                          • #14
                            This is a minor rise & not a positive indication of relapse. While it is possibly indicating a relapse, it is too soon to start planning for chemotherapy. Get his testosterone checked & please, be certain about the marijuana. He is 24 years old, he will not be likely to admit to mom that he had some marijuana...

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

                            Comment


                            • #15
                              Hi Dave,

                              Thank you so much got your prompt advice.
                              I had a serious talk with him , he denied marijuana. I know he doesn’t smoke and dislikes drinking alcohol.

                              This result is after he got 200 testosterone injection.

                              I think the doctor will order an ultrasound for his right testis next week. Because of his CTs are stable. Doctor said so far they can do nothing. I am totally sacred, cannot think more..

                              Amy

                              Comment

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