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

    So on Wednesday Jan 9th I had my 4.5 Year Post Chemo checkup.

    ​When my Oncologist came in she said I don't have cancer....but one of my "Numbers" was up. That "Number" is AFP. My AFP was at 8.7 (Normal < 8). She initially said that she was not concerned about this. She figured it was just inflammation somewhere in my body and a response to that. After discussing this with my Onc. she had me take another AFP test before I left. Yesterday I was called and told that it went up to 9. So it went up 0.3 pojnts in a span of five days. I realize that 8.7 vs. 9.0 is splitting hairs, but obviously anything going up and not down is scary. Then she ordered a Pelvic/Abdo CT Scan and Scrotal Ultrasound (US) on my remaining guy.

    ​Today as I got my rational thoughts about me; I reached out to Dr. Einhorn because I knew that he typically does not worry about AFP till it's over 25 and I wanted his opinion His response was exactly that....this is nothing to worry about until it goes over 25. I should * not * do the CT or US. Instead I should have my AFP re-tested in 2-3 months.

    ​I called back to my Onco and mentioned that and gave her links to publications that I also have saying the same thing from Indiana. She replied that Dr. E. is not being aggressive enough....it's too passive. He has a tendency to undertreat, etc. I can see that pov, and sometimes, as a patient, I’d rather be more aggressive anyways and she knows it. She knows me well, and knew that this would play on my mind heavily/negatively, and that the scans etc would quickly put any worries to bed.

    ​I was treated as Stage 2B Pure Seminoma with I/O and 3xBEP. So to me *if * it's cancer then it's either a second primary in my remaining guy, or a recurrence of the previous cancer but transformed into Non-Seminoma…..not cool !

    ​So here's the problem: My Onco. is pushing for the scans while to foremost TC Dr. says to hold off. Personally I would rather not wait 2-3 months and I would rather get a jump on anything before it gets a jump on me. But at the same time I have had scares in the past which had turned out to be false alarms. Never got to the pint of needing CT or US. Is it worth both the $ and the radiation….or would you wait ?

    What do you all think ?

    ​I am open to all thoughts.


    Thanks,

    - 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 !

  • #2
    Matt, it all comes to your peace of mind - if making sure you know what's happening is going to make things easier, go for it!! The radiation isn't that much, I don't believe, and money you could get later, but doing what matters to you right now is key!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 2.5 years now + new baby!

    Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    Simplify Cancer Podcast

    Comment


    • #3
      I see little harm in an exta scan, & much good if it provides peace of mind. The radiation should not be as much concern as not finding a serious problem. This needs to be kept in perspective...
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #4
        Huh, rough choice. I see that your AFP was normal when they found original TC. I may say that AFP level of 9 is very low. I red about AFP a lot, my familly member got AFP 21 when had liver inflammation, I think that cut off value for AFP is 30, if it is bellow that it should only be monitored. Liver cancers have AFP over 500. Do you take any heavy medications, liver is extremely sensitive to practicaly all of them? Also, it may be problem to detect any reccurence with TC scan with so small AFP value, even if it is reccurence, so it will be unecessary screening. Dr Einhorn's advice looks very rational.
        45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
        Waiting...

        Comment


        • #5
          I would think the chances of it being a relapse or a second primary are quite low, but perhaps I'd go for the scans for the peace of mind. For a long time I was quite anxious about the possibility of a relapse. The only thing that helped was solid evidence that I was OK!

          All the best.
          Nick

          Embryonal Carcinoma; Seminoma. Marker negative.
          August 2001: Right I/O .
          August - December 2001: Surveillance .
          December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
          December 2001 - March 2002: 3xBEP .
          Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

          March 2012 - Ten years since finishing chemo.

          Survivorship Blog is here

          Comment


          • #6
            In the past if my doc. did not take immediate action on something like this I would get pissed and get all over them about not being aggressive enough. For a brief while I had a different Onco. and at my 2nd year checkup my bHCG went up to 13. I pushed her to retest it and she said this was nothing to worry about and that she wanted me to retest it again in 6 months. I went nuts because I wasn’t going to wait that long. So I fired her and went back to my current Onco. Both my current Onco. and Dr. Einhorn agreed that it was a bad decision to wait 6 months. We did re-test immediately and it was just another false alarm…..bad test.

            Fast forward 2.5 years to now and my mental state around this has changed quite a bit. I have moved beyond this cancer thing. It was not affecting me in any way anymore. All fears of recurrence or new cancer was gone. I was fully recovered mentally and was my old pre-cancer self. At this point I find myself tending to agree more with keeping all treatments, surveillance, etc at a minimum to avoid over treatment, radiation, and stress. This same thought is likely behind Dr. Einhorn saying the same thing, plus he simply has far more experience and statistically relevant data to back him up.

            I am expecting a call from my Onco. tomorrow to discuss this matter again. I don’t feel comfortable waiting too long on this. I have just enrolled in a class at the University of Texas and my first class starts this week….so at the same time I kinda want to “rush” getting to the bottom of this. I don’t want to be half way through class, find out I do have an issue, need treatment, etc….at this point I could likely get my money back. I don’t “need’ this class….it’s a “want it” thing. So timing of course sucks.

            Also; I really want to know if she truly is concerned or if she is simply ordering this to put my mind at ease ? If I did the scan now and everything came back normal, but a subsequent AFP test comes back higher it would really stress me out and my mind will really not be at ease. But at the same time waiting 2-3 months will be stressful.
            I will likely do the scans, if anything as another strong datapoint to add to my collective cancer history. I’ve not had a scan in 18 months. If there is anything then at least I’ll know. If there is nothing then I am out ~ $1,000 and the stress of a couple days waiting (for results) game.

            To answer other questiosn asked: No, I am not on any drugs. I have not taken anything in over a year since I had my last sinus infection. However; over the holidays my bowels/intestines/colon were irritated and I was showing signs of IBS. I actually took a few Tums on two separate days in the same week. Had a bit of abdominal cramping and nausea. My bowel movements just prior to and on the day of the appt. were reflective and related to that. I also put on nearly 10 pounds in the last 6 months with most of that in November/December. I also had an episode of Benign Paroxysmal Positional Vertigo which I can trace to an exact moment when I was working on an appliance and felt a bunch of fluid in my head/ears shift while bending over/straining and tilting my head the opposite direction. Also; one of my hobbies involves exposures to spray paints, glues, plastic, and resin solvents. I did work on that hobby extensively in the weeks prior and I know that exposure to those fumes, etc are toxic to the liver.

            I’ve seen some documents stating that that IBS/D and exposure to chemicals/solvents can mess with AFP/liver…same with weight gain (but cannot find anything to back it up):

            http://www.kantrowitz.com/cancerpoints/tumormarkerfalsepositives.html

            Both my Total Protein and Globulins were either at or just above ULN also indicating liver activity and possible chronic inflammation. My Onco. did mention that she thought it was inflammation and my body has been documented to have a inflammation and puts out a lot of antibodies…as tested previously in a Serum Protein Electrophoresis tests. Heterophile antibodies are also known to elevated both AFP and bHCG test results.

            Of course the happenings in the last few weeks * were not * discussed with my Onco. because I was too busy dealing with the shock of the news, her trying to keep me calm/rational, and the appt. was short. I do plan to discuss this with her. Up until now I have never had to dig into the AFP stuff as it has never been an issue with me so I didn’t really have anything to say at that moment anyways because I was not educated in this tumor marker very well….till now.

            ​I am trying not to over-analyze this, but I my education and profession consists of science and data analytics, so for me it's just the way that I am built. Always need to ask questions, get some answers, ask more questions......etc

            Sorry for the long post; at least this may be informational to others too.


            Wish me luck; and I will keep everyone updated.

            - 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


            • #7
              I could be wrong, but I thought the guidelines say to scan annually out to year 5. If I am correct you are overdue at 18 months since your last scan.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                I grabbed the latest NCCN Guideline for TC (Version 1.2019 - October 31, 2018).

                According to Table 3. œ"Clinical Stage IIA and Non-Bulky IIB Seminoma: Surveillance after Radiotherapy or Chemotherapy€" It shows the that the last Pelvic/Abdo. CT Scan is at year 3. That'™s where my Oncologist cut me off on scans. Of course any scan can be done beyond year 3 as "Clinically Indicated".

                Well, I'd rather not be in the "œClinically Indicated" bucket, but maybe I am, for the sake of argument.

                In any event I am heavily leaning towards going with the scans at this point. Yes, I know that that is not what Dr. E. says, and yes it entails further (maybe unnecessary) radiation but I have two reasons:

                1: It's not a trust issue with either my Onco. or Dr E. It'™s a trust issue with cancer .... I don'™t trust cancer.
                2: If I wait 2-3 months per Dr. E. and it elevated more and I do indeed have an real issue; then I will be kicking myself for having not done the scans when it was offered.

                I am Glad that I have options and would rather be safe than sorry. The sooner I have any answers; good or bad, the better.

                ‹I am still open to other thoughts and ideas.


                - Matt
                Last edited by JeskiM69; 01-13-19, 05:46 PM. Reason: I cannot seem to edit away these special symbols.
                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


                • #9
                  Why not re-check markers in 2-3 weeks? Stay away from anything that might cause a rise in the meantime. If it is higher, you have reason for concern, if is the same or lower, you are probably OK. It is a n essentially risk-less blood test, after all.

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

                  Comment


                  • #10
                    Originally posted by Davepet View Post
                    Why not re-check markers in 2-3 weeks? Stay away from anything that might cause a rise in the meantime. If it is higher, you have reason for concern, if is the same or lower, you are probably OK. It is a n essentially risk-less blood test, after all.

                    Dave
                    Reading, this is the approach I would take. If same or higher, consider the scans. If lower, then probably the rise in AFP had other causes.
                    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


                    • #11
                      I like that idea. That's enough time for 2-3 half-lives to pass.

                      I'll mention that to my Onco. as something I am willing to do.

                      If it indeed goes up, then we'll jump right to the scrotal US and Pelvic/Abdo CT.

                      Thanks, guys !

                      - 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


                      • #12
                        Yeah, I'd probably trust that statistics are on your side, chances of this being anything are pretty low, even though we all know it is possible, which causes some major worry!
                        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


                        • #13
                          Just got a call back from my Onco. (on her day off). Your idea was the same idea she had.

                          So, I'll get the AFP re-tested in 2-3 weeks. If it goes up then we'll scan.

                          I mentioned the other stuff to her since it wasn't discussed at my appt. and she felt even more that it's likely not related to TC. She mostly ordered the scans to prove to me that it's most likely nothing wrong.

                          I hate surveillance; just hate it. But I am happy to do it vs the alternative. I will keep you all posted.

                          - 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


                          • #14
                            sounds good, crossing my fingers!!
                            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


                            • #15
                              Sorry to hear that you are dealing with this. Another thing to keep in mind is that AFP should not be elevated in seminoma so to me such a mild elevation would seem less likely to be relapse related compared to perhaps just some minor liver issues, etc. The other thought is that it is not impossible for it to be a second primary. For me, re-checking the levels in a few weeks seem like a good plan, it is just keeping from stressing out before the results that may be the hard part. 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

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