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Need Advice (AFP).... possible late recurrence

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  • #16
    Personally *IF* it's cancer; I'd rather it be a second primary as a recurrence this far out (4,5 years) would not be good. I am well aware of the elevated risk of a second primary.

    I will likely have my Urologist do the US, I prefer her doing it instead of some stranger....even if she is hot. Also, when I started Surveillance; US were not typically part of it. However, I think that I will mention to my Oncologist that I would like one done with each of my checkups or on some sort of schedule.

    - Matt
    March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
    March 13th: Left IO 100% Classic Seminoma
    6.3 x 5.1 x 3.8 cm, no invasion of anything
    LDH never fully normalized
    Stage: IS
    Watchful Waiting
    May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
    May 12th: started 3xBEP
    Neupogen during Cycle 2 and 3
    July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
    August 4th: Post Chemo CT/PET scan
    September 4th: Port removed
    Jan 9th 2019: 4.5 YEARS ALL CLEAR !

    Comment


    • #17
      Your primary TC didn't elevate AFP, so there is no logic that this is reccurence. Did your AFP go up and down before, even if it was allways bellow limit? Elevation of AFP usually coresponds with tumor size. US of remaining testicle and maybe US of the liver can be indicated, but not with so low AFP, so small elevation of AFP doesn't indicate anything.
      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
      Waiting...

      Comment


      • #18
        There are documented cases where a late relapse of Seminoma can indeed be Non-Seminoma. So there is no guarantee that a late relapse will be the same Histology as the initial occurrence.

        As far as my historical AFP levels it looks like this:

        From July 2015 to July 2016 I steadily crept up from 2.5 to 7.0. Then since then I have been hanging around 4.5

        Yes, I agree that this AFP is barely elevated at all. Which is why I am holding out on the CT scan. Blood work is easy and fairly cheap. The downside is the mental state plus a bit of the "Not Knowing / Waiting" state which sucks.

        I forgot to mention that my Onco. specializes in liver and gastrointestinal cancers, all of which can bump AFP....which her concern tilts more towards issues in that area vs. TC. Again, shes' still not jumping on this as cancer, maybe more related to liver / gastro issues.

        - Matt
        March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
        March 13th: Left IO 100% Classic Seminoma
        6.3 x 5.1 x 3.8 cm, no invasion of anything
        LDH never fully normalized
        Stage: IS
        Watchful Waiting
        May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
        May 12th: started 3xBEP
        Neupogen during Cycle 2 and 3
        July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
        August 4th: Post Chemo CT/PET scan
        September 4th: Port removed
        Jan 9th 2019: 4.5 YEARS ALL CLEAR !

        Comment


        • #19
          Originally posted by JeskiM69 View Post
          There are documented cases where a late relapse of Seminoma can indeed be Non-Seminoma. So there is no guarantee that a late relapse will be the same Histology as the initial occurrence. As far as my historical AFP levels it looks like this: From July 2015 to July 2016 I steadily crept up from 2.5 to 7.0. Then since then I have been hanging around 4.5 Yes, I agree that this AFP is barely elevated at all. Which is why I am holding out on the CT scan. Blood work is easy and fairly cheap. The downside is the mental state plus a bit of the "Not Knowing / Waiting" state which sucks. I forgot to mention that my Onco. specializes in liver and gastrointestinal cancers, all of which can bump AFP....which her concern tilts more towards issues in that area vs. TC. Again, shes' still not jumping on this as cancer, maybe more related to liver / gastro issues. - Matt
          I don't think that seminoma can somehow turn to nonseminoma, these are two completely different histological things, it's possible that pathology reports in these cases were inadequate and that pathologists missed nonseminoma components which were to small. But if you done full chemo, there is practically zero chance that some small nonseminoma component survived. As I red, AFP is very releable marker and it is generaly not related to something that isn't liver/TC cancer or liver damage, but in cancer situations it must be high, small values don's say anything. In your case I predict that it is nothing and nothing will be found.
          45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
          Waiting...

          Comment


          • #20
            So yesterday I had a scrotal utrasound (US). Just before I left I managed to get a glimpse of the tiny summary pictures on the machine. One of them had a "spot" that caught my attention. Twenty minutes later I got a call from the radiologist who is going to write the report asking me to come back for more pictures. So I go back and within a minute he is focused on the exact same spot that I noticed.

            The US picked up a tiny (1x2 mm) hypo-echoic area with some vascularity. The rest of the testis looked perfectly normal. So after a good discussion with the radiologist about my background, opinions, etc I left. Obviously giving my background this may be of concern. He mentioned that it could simply just be a focal Orchitis and a few other things. I have a follow up appt. with my Urologist this Friday (Feb. 1) to go over this. I will also be getting my AFP re-checked this week to see where it has gone.

            Surprisingly this is a huge weight off of my shoulder ! I am strangely happy that the US did find something. I suppose it's because it means that it may not be a late recurrence of the previous cancer. It may simply be a second testicular primary.....far better than a recurrence of the previous one in my mind....and if it is then it likely found very early.

            My guess is that if the AFP goes up then this guy may be coming out; provided I have a clean CT scan. If the AFP goes down then I guess they'll just want to monitor it.

            I guess this next week will get "interesting" on this front to say the least.

            - Matt
            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
            March 13th: Left IO 100% Classic Seminoma
            6.3 x 5.1 x 3.8 cm, no invasion of anything
            LDH never fully normalized
            Stage: IS
            Watchful Waiting
            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
            May 12th: started 3xBEP
            Neupogen during Cycle 2 and 3
            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
            August 4th: Post Chemo CT/PET scan
            September 4th: Port removed
            Jan 9th 2019: 4.5 YEARS ALL CLEAR !

            Comment


            • #21
              Well, 1x2 mm area and AFP 9 still don't tell anything. Another US in a while can be usefull. Hold on.
              45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
              Waiting...

              Comment


              • #22
                Although I am not a medical professional I suggest waiting to see repeat AFP, and getting another u/s. If both are indicative of possible 2nd primary tumor than please reach out again to Dr. E. to get his thoughts. So sorry you are in waiting mode still. Curious, and apologize if TMI but have you been doing monthly checks? Forgive me if you mentioned it previously?
                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


                • #23
                  Agreed that the combination of the 1x2 mm US "finding" and the fact that the AFP is still very low tells us very little. I'd rather be "taking action" then doing "nothing" which one can argue that that's wait surveillance is.

                  No. I do not do monthly checks. I do the occasional check, but not on any regular schedule. I can tell you that four people (Myself, my GP, Urologist, and Oncologist) have done the test on me and not one of them has felt it. I doubt that anything that small is palpable anyways.

                  I did have my AFP drawn again today, and I see my Urologist to go over the US late Friday morning.

                  - Matt
                  March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                  March 13th: Left IO 100% Classic Seminoma
                  6.3 x 5.1 x 3.8 cm, no invasion of anything
                  LDH never fully normalized
                  Stage: IS
                  Watchful Waiting
                  May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                  May 12th: started 3xBEP
                  Neupogen during Cycle 2 and 3
                  July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                  August 4th: Post Chemo CT/PET scan
                  September 4th: Port removed
                  Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                  Comment


                  • #24
                    I had my AFP re-drawn two days ago. Today I met with the Urologist to go over my Ultrasound results. The appointment was a mixed bag (yes, pun intended).

                    My AFP went down to 4.1 So it's now comfortably within the normal range. My Oncologist wants to re-test it in three months. She said not to bother with the CT scan at this point....so no CT scan for now.

                    The Radiology report for the Ultrasound came back inconclusive. There is a 6 x 6 mm diffuse hypoechoic area near the mediastinum (mid line) of the testis. There is weak vasculature and a minimal Hydrocele around it. There may be a tiny microlith associated with it...I say "may" because the Radiologist is unsure if it's a microlith vs. just a lighter pixel/artifact in the image itself. The recommendation is to get an MRI done in a week or so to hopefully get a better resolution on this area. Neither the Radiologist or my Urologist think that it's cancer but at the same time they cannot rule out a solid mass. The Urologist is leaning towards non cancer since the area in question is diffuse instead of a more delineated edge/boundary.

                    I feel much better knowing that the AFP came back clean. But now the question is: WTF is going on in the testicle ?!?

                    I asked my Urologist after I completed chemo why not just remove the remaining guy so that I'll never have to worry about it again.....here we are worrying about it again. Right now I'd rather just get it out, do TRT, and be done with testicles, period. I don't trust my remaining guy anymore and these checkups are getting old; fast.

                    - Matt
                    March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                    March 13th: Left IO 100% Classic Seminoma
                    6.3 x 5.1 x 3.8 cm, no invasion of anything
                    LDH never fully normalized
                    Stage: IS
                    Watchful Waiting
                    May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                    May 12th: started 3xBEP
                    Neupogen during Cycle 2 and 3
                    July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                    August 4th: Post Chemo CT/PET scan
                    September 4th: Port removed
                    Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                    Comment


                    • #25
                      So typical, go checking for one thing, then they find something else, and then first thing goes fine. Ok, so far you can be sure that it isn't late recurrence, no liver cancer or other liver issue, but new thing is possible another primary TC. Well, 6x6 mm is not 1x2 mm, it is something to be concerned.
                      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                      Waiting...

                      Comment


                      • #26
                        What a roller coaster.

                        Yeah I don't trust my other testicle either. I totally understand the frustration and just wanting to get the other one out, but a lifetime of struggling with TRT and maintaining proper replacement levels isn't going to be any fun either. I would just keep a watchful eye on your remaining testicle, and stick with the periodic scans and ultrasounds.

                        I was supposed to get a scrotal ultrasound last year and just never had time. I have a new order from my most recent physical, but am still dragging my feet. Too worried they'll "find something" and then it'll turn into a fishing expedition like this. I'll get it done eventually. I'm more eager to get caught up on some minor dental work than get my ball scanned! LOL
                        Young Adult Cancer Survivorship by Steve Pake
                        April is Testicular Cancer Awareness Month!
                        www.stevepake.com
                        Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                        My Survivorship Thread | All of my Blogs
                        C
                        ONTACT ME ANYTIME!

                        Comment


                        • #27
                          Well after subsequent blood tests, Ultrasound and MRI and three visits to my Urologist we have finally come to a conclusion on this silliness and I can now get off of this stupid carnival/roller coaster ride.

                          First I’d like to touch on the AFP. We have 4 theories about the spike:

                          1: It was done using a different test kit than the previous tests: There have been other times when a similar thing happened and my number went from the 4’s into the 5-7’s then back into the 4’s on another test kit

                          2: Heterophilic or anti-animal antibody interference: My dog is 17 years old and had a bad bladder/urinary infection and had been peeing all over himself and he could not get up our wooden steps so I would have to carry him up the steps. So I was being exposed to animal wastes just before the AFP tests.

                          3: Acute Liver damage: Also, in that week before my tests I was spray painting outside and the wind shifted and blew the vapors into my face. I was dizzy and nauseated for the next two days. The Liver may have been slightly damaged in that incident. When the liver regenerates it releases AFP.

                          4: Diet. In the last two months before the tests I had gained nearly 10 pounds. One of the things I was eating too much of (besides sugar and beer) was Eggs. Eggs (and Salmon, which I also love to eat) are loaded with Biotin. High levels of Biotin can falsely elevate AFP blood tests.

                          Either way; we will never really know what was up with those results.

                          Now after my US and the MRI; which really brought out the details of what was going on in my sack, it is has been determined that I am dealing with a case of Tubular Ectasia of the Rete Testis.

                          Essentially some of the tubes within the Rete Testis are dilated and showing cystic behaviors on the scans. This also explains some of the pain sensations down there. My US was inconclusive, but the MRI showed it very clearly.

                          Here’s some more information:
                          http://www.journal-ina.com/article.a...ulast=Kulkarni

                          So now I can say that I am ALL CLEAR at the 4.5 year mark !!! What a wild ride it has been !!!

                          -- Matt
                          March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                          March 13th: Left IO 100% Classic Seminoma
                          6.3 x 5.1 x 3.8 cm, no invasion of anything
                          LDH never fully normalized
                          Stage: IS
                          Watchful Waiting
                          May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                          May 12th: started 3xBEP
                          Neupogen during Cycle 2 and 3
                          July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                          August 4th: Post Chemo CT/PET scan
                          September 4th: Port removed
                          Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                          Comment


                          • #28
                            GLAD TO HEAR!!!!
                            Young Adult Cancer Survivorship by Steve Pake
                            April is Testicular Cancer Awareness Month!
                            www.stevepake.com
                            Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                            My Survivorship Thread | All of my Blogs
                            C
                            ONTACT ME ANYTIME!

                            Comment


                            • #29
                              So, two false alarms, heh. Great news.
                              45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                              Waiting...

                              Comment


                              • #30
                                Wild ride indeed. Congrats!
                                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: begin 4xEP, end 9/18/15
                                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!
                                4/15/19: all clears up to this date!

                                Comment

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