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First year after chemo pet/ct not as expected,im freaking out

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  • First year after chemo pet/ct not as expected,im freaking out

    Here is a brief history of my husband's journey:
    3/2016 R/O;

    Afp 89 and hcg84 before surgery ;
    Pathology:non sem. 90% embryonal 10% yolk sac

    No signs of invasion

    Normalized 6 weeks after surgery;

    4/2016 surveillance ;

    8/2016 confirmed relapse ;

    Found 15 mm spot on the left lung and markers elevated;

    3x Bep

    ; 29/10/2016 last day of bep
    ;11/2016 lung spot shrunk to 3.5mm and markers normalized and no signs of cancer activity!;

    11/2016 Back on surveillance ;

    3/2017 6months pet/ct all clear,



    Yesterday on our first year after chemo visit, we got the pet/ct results and the tumor residue is enlarged from 3.5mm to 4mm
    The doctor was abit concerned, but his tumer markers are normal :Afp 2 and bhcg2 (which is bit weard since it never fluctuated from 0.1)
    He now left us to decide either take a biopsy now and see what is really happening and remove it surgically
    Or to wait 3 more months to repeat the scan.
    Is his cancer back ?! Is it only a small enlargement and it will get back to its size? Or it is just dead cells producing some sort of calcium and it is surrounding the scar tissue. I really need someone who have been is this situation , we both are freaked out.
    Plus the doctor didnt want to put the pet results into consideration because of the small size of the scar tissue. Which adds up to the anxiety.
    Last edited by Wifeofwarior; 11-09-17, 02:55 PM.

  • #2
    0.5mm larger? That is borderline undetectable on a CT, and probably even a measuring/estimation difference between radiologists reading the scans. I would wait for another scan, maybe in a month? I would certainly not freak out yet, chances are low that this is something sinister.
    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


    • #3
      The doctor didnt mention that, however he jumped into surgery options. Maybe because of its position being on the left lung. Im also afraid that maybe time is of the essence and waiting for a month more would make the situation worse.
      Thanks @biwi for easing my mind with this conclusion I hope it is right! I spent the whole day yesterday freaking out and being on zombie mode since the results.
      I'll keep you posted

      Comment


      • #4
        I am not a physician but an increase of that magnitude doesn't seem very significant. I'm not sure that PET/CT or really any imaging modality can help provide much detail on a lesion that small. I am also not sure why they are doing PET/CT over standard CT as it is my understanding that there isn't really a role for PET in nonseminomas. It's a question that you could ask your doctor.

        Perhaps you can have your doctor reach out to one of the testicular cancer experts to get their opinion, if you are not already seeing one, as I am not sure where you are located. Our friends at the TCRC keep a nice list at: http://tcrc.acor.org/experts.html

        I think it is also a good sign that the tumor markers are not elevated. While I would certainly keep an eye on things, I personally would not be overly concerned to the point of rushing into further intervention without more proof of a relapse or direction from a testis cancer expert. The waiting can certainly be the scariest part but may be worth it.

        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


        • #5
          Originally posted by Mike View Post
          I am not a physician but an increase of that magnitude doesn't seem very significant. I'm not sure that PET/CT or really any imaging modality can help provide much detail on a lesion that small. I am also not sure why they are doing PET/CT over standard CT as it is my understanding that there isn't really a role for PET in nonseminomas. It's a question that you could ask your doctor.

          Perhaps you can have your doctor reach out to one of the testicular cancer experts to get their opinion, if you are not already seeing one, as I am not sure where you are located. Our friends at the TCRC keep a nice list at: http://tcrc.acor.org/experts.html

          I think it is also a good sign that the tumor markers are not elevated. While I would certainly keep an eye on things, I personally would not be overly concerned to the point of rushing into further intervention without more proof of a relapse or direction from a testis cancer expert. The waiting can certainly be the scariest part but may be worth it.

          Mike
          I just went into the papers and i found out that the lesion increased size by 1.0 mm and not 0.5 mm ,not sure if it makes any difference but certainly gave me a heart attack.
          Actually our dr. is prof mickel seckel from charing cross hospital. I will ask about not having CT .
          I would love to ask for more opinions but my husband is quite stubborn on that since he doesn't want to get overwhelmed with different opinions and would stick to his doctor's.

          Comment


          • #6
            Originally posted by biwi View Post
            0.5mm larger? That is borderline undetectable on a CT, and probably even a measuring/estimation difference between radiologists reading the scans. I would wait for another scan, maybe in a month? I would certainly not freak out yet, chances are low that this is something sinister.
            Sorry I just went into the papers and found out its 1.5mm larger not 0.5mm, this gave me a heart attack. I hope it will have the same explanation as what you said earlier.

            Comment


            • #7
              If you are saying that it went from 3.5 mm to 5 mm then that might have more significant meaning than from 3.5 mm to 4 mm. I am not familiar with the doctor but that doesn't mean that he isn't anything but capable. With lung lesions I am not certain about the use of PET/CT over just using CT. That was what you may want to ask but certainly CT has a role.

              I suppose I would ask my doctor if he has run the situation past any others to get their opinions, such as perhaps Dr. Thomas Powles at Barts. Again, I just do not personally know the doctor. I would also ask that based on the lesion size what are the success rates of obtaining a proper biopsy sample and the complication of the biopsy process and if these numbers are better if the lesion is larger with the context of if the outcomes, if it is cancerous, change by waiting to assess progression of the size. Overall, you're wanting to know if waiting has a better success at identifying the lesion without sacrificing survival outcomes and treatments options.

              I know that this is completely frightening but given how early it is seen I think is good news in that there are options. For example, if it was much larger then that would dictate more mandatorily what needs to be done (hopefully, that makes sense).

              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


              • #8
                Originally posted by Wifeofwarior View Post

                I would love to ask for more opinions but my husband is quite stubborn on that since he doesn't want to get overwhelmed with different opinions and would stick to his doctor's.
                If this was fixing a broken leg or treating high blood pressure, then I would agree but here is a recent piece by a bunch of the top experts in testis cancer about why having experienced physicians is so key http://ascopubs.org/doi/pdf/10.1200/JCO.2017.73.4723

                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


                • #9
                  Absolutely not a doctor but with no markers it could be teratoma. Iíve seen here that a few guys with yolk sac and embryonal in the original pathology eventually develop a teratoma post chemo. I would imagine if it is anything, which is very well may not be, it is more likely to be teratoma rather than active cancer since the relapse was caught so early.
                  3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

                  Comment


                  • #10
                    Originally posted by Mike View Post

                    If this was fixing a broken leg or treating high blood pressure, then I would agree but here is a recent piece by a bunch of the top experts in testis cancer about why having experienced physicians is so key http://ascopubs.org/doi/pdf/10.1200/JCO.2017.73.4723

                    Mike
                    Thanks mike for the article , I will make sure he reads it
                    I've also spoked to the doctor about the pet/ct he said that they used the standard CT scan for his both post chemo scans after 6 months and after 1 year . He also mentioned that pet wont be accurate as you said earlier.
                    Thank you Mike

                    Comment


                    • #11
                      Originally posted by dcalandrelli View Post
                      Absolutely not a doctor but with no markers it could be teratoma. I’ve seen here that a few guys with yolk sac and embryonal in the original pathology eventually develop a teratoma post chemo. I would imagine if it is anything, which is very well may not be, it is more likely to be teratoma rather than active cancer since the relapse was caught so early.
                      Does teratoma continues to grow? As far as I know is that teratoma is non active.

                      Comment


                      • #12
                        It grows very slowly. Chemo wonít kill teratoma so they need surgically removed which is why sometimes they pop up shortly after chemo.
                        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

                        Comment


                        • #13
                          Originally posted by dcalandrelli View Post
                          It grows very slowly. Chemo won’t kill teratoma so they need surgically removed which is why sometimes they pop up shortly after chemo.
                          Does it come back again after it is been surgically removed ?
                          Thanks dcalandrelli

                          Comment


                          • #14
                            Originally posted by Mike View Post
                            If you are saying that it went from 3.5 mm to 5 mm then that might have more significant meaning than from 3.5 mm to 4 mm. I am not familiar with the doctor but that doesn't mean that he isn't anything but capable. With lung lesions I am not certain about the use of PET/CT over just using CT. That was what you may want to ask but certainly CT has a role.

                            I suppose I would ask my doctor if he has run the situation past any others to get their opinions, such as perhaps Dr. Thomas Powles at Barts. Again, I just do not personally know the doctor. I would also ask that based on the lesion size what are the success rates of obtaining a proper biopsy sample and the complication of the biopsy process and if these numbers are better if the lesion is larger with the context of if the outcomes, if it is cancerous, change by waiting to assess progression of the size. Overall, you're wanting to know if waiting has a better success at identifying the lesion without sacrificing survival outcomes and treatments options.

                            I know that this is completely frightening but given how early it is seen I think is good news in that there are options. For example, if it was much larger then that would dictate more mandatorily what needs to be done (hopefully, that makes sense).

                            Mike
                            I'm sorry measurements are right from what I said in the beginning it enlaged from 3.5mm to 4mm , sorry for that I'm in a mess, didn't get much sleep with my anxiety.
                            its exactly written on the report from 57 cubic mm to 90 cubic mm, which is more accurate.

                            Comment


                            • #15
                              It is also written on the report that the doubling time of the growth is 330 days. Does this indicate that it might be cancer again godforbid?

                              Comment

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