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  • Feeling Confused & Frustrated

    [[FEELING CONFUSED & FRUSTRATED . LOOKING FOR SOME FRIENDLY ADVICE ]

    Hey Everybody ,
    My name is Gary , I've being a member for close to 2 years , just being in the background using all the available information on this page . Its helped me so much over the last 2 years .

    Feeling slightly confused but more frustrated . I could really do with some advice , I'm starting to lose faith in my Doctors decisions regarding my treatment .
    Today was supposed to be the day when the good news started , the results from my post chemo (3xBEP) CT Scan & Bloods .

    AFP 13.7

    CT LYMPH NODES : There is a chain of abdominal lymph node in the left para-ortic region just inferior to the left renal artery. they measure up to 11mm in short axis which is stable .

    My AFP has always being slightly above average since i had my left I/O(7/9/2015) , its always fluctuated between 12-15 , its never being below the magic marker 10 .

    Its being 4 months since i had my initial CT followed by PET scan , there has being no change in Lymph node size since then. My AFP is slightly elevated which has always being the case since 2015 .

    I just get the feeling from my Doctor today , that he might of rushed me into Chemo , maybe we should have watched the AFP , then had another scan in 2-3 months . Which is exactly what he wants to do now , hes asked to come back in 6 weeks with new bloods and then decide on our next step Biopsy/RPLND.

    Thats why I'm feeling confused about the whole situation , did i just complete 3x BEP for no reason , should we not have went ahead with the Biopsy before Chemo rather than after chemo ?

    SEPT 2015 Left I/O . No Invasion .
    Tumour Size 17x15x12mm
    confined to the testis
    Embryonal Carcinoma

    Followed survelliance protocol till 7/8/2017 two enlarged lymph nodes found on CT Scan sent for PET Scan
    Lymph Nodes had increased from 7x7mm to 9x9mm


    PET SCAN RESULTS 25/8/2017 CONCLUSION:
    The known enlarged retroperitoneal para-aortic lymph nodes are F D G avid consistent with metastases . No scan evidence of F D G avid malignacy elsewhere .

    9/10/17 Started 3xBEP
    9/12/17 Finished 3xBEP

    Today 15/12/17) Post BEP CT &Blood , no change in lymph nodes , slight change in AFP

    AFP RESULTS JUNE -DECEMBER 2017
    07/8 14.7
    16/8 14.7
    06/9 14.1
    20/10 11.9 ( Finished 1x BEP)
    27/10 11.3
    17/11 12.9
    11/12 13.7 (3xBEP Completed )
    Back in 6 weeks to check AFP , and to decide the next step in my treatment . feeling very nervous now .

    Sorry guys i tried to explain everything as best i can , any advice would be really helpful . My Doctor is starting to make me feel nervous about everything .
    Last edited by Darwin2015; 12-15-17, 05:41 PM.
    Feeling confused & frustrated . Looking for some advice .

  • #2
    Sorry you are confused, but actually so am I. not a doctor, but if Embroynal Carcinoma, why Pet Scan? In the US, for nonseminoma, they rarely use Pet Scans. What does you Dr. want to biopsy?
    Your AFP is not highly elevated. Are the nodes new on the CT Scan from 7/6/17, or were they there pre chemo? If they were there pre chemo & did not decrease in size post chemo than usually in the US the protocol for nonseminoma masses post BEP/EP is the perform RPLND on nodes OVER 1cm.
    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


    • #3
      First off, yes, some people do have slightly elevated natural AFP levels, so no real concerns there. Next, PET scans should NOT be used for non-seminoma testicular cancer diagnostics, as they're considered unreliable due to a high rate of false positives. (They're only used in the post-chemotherapy management of bulky pure seminoma residual masses, which is a very narrow scope and not applicable here) Also, the two 7x7 and 9x9mm enlarged lymph nodes aren't really meeting the >1cm standard for being considered enlarged with respect to cancer. This definitely would have warranted a second opinion with a known TC expert to weigh in. Yes, it's possible that you "may" have been over-treated with the BEPx3. It might have been better to try to biopsy one of the slightly enlarged nodes if possible, and/or done a primary RPLND surgery to pathologically confirm things that way. If there was indeed cancer, rest assured that the BEPx3 killed it, but if it were something like teratoma, which is still possible even if none were found in initial pathology, that could still be lurking. Personally, I would have a known TC expert review your entire case at this point.
      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


      • #4
        Hey Trekga ,
        Iím in a small town in Australia , Iím limited to my selections of Doctors
        . Iíve followed my oncologists advice so far , now Iím starting to question him .
        In Australia & Europe they seem to try avoid RPLND at all costs , Chemo is there first port of call for everything . Heís suggesting a biopsy first before invasive surgery .
        He told me that PET Scan isnít always very accurate for detecting , but it was our best option ?
        My lymph nodes where 7x7mm for 14months of survelliance , then they changed to 9x9mm pre chemo . Still 9x9mm post chemo . No change in size in the last 4 months .
        The doctor has said it can be three things 1. Teratoma 2. Active cancer 3. Scar tissue .
        Active cancer makes no sense to me , surely my AFP would be thru the roof ??
        Scar tissue , I donít understand how it could be scar tissue , if there is not changes in size ?
        Maybe Teratoma , like I said Iím pretty confused .
        Feeling confused & frustrated . Looking for some advice .

        Comment


        • #5
          Hey Steve ,
          Thank you for the reply . That’s the plan now , to find a TC expert & get a second opinion now . Only problem is most of the experts seem to be in the USA . I’íll start my research & hopefully I can find one in Australia .
          Feeling confused & frustrated . Looking for some advice .

          Comment


          • #6
            According to Dr. Einhorn no AFP below 25 is considered abnormal. I had my AFP shoot up to 19 post chemo, a month later it was restested and was down to 10, at my next follow up it was in the single digits. Iíve seen many guys here who just have abnormally high AFP and it always stays in the teens. With blood markers you should focus on trends. If your AFP is fluctuating I would imagine it isnít cancer because cancer wouldnít make it rise then fall. It would just consistently rise.
            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! 3/19/18 All clear!

            Comment


            • #7
              I would email Dr. Einhorn at Indiana University about your case. Heís the best there is. Here is his email: leinhorn@iu.edu
              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! 3/19/18 All clear!

              Comment


              • #8
                Here is a paper from Dr. Einhorn about AFP.
                http://ascopubs.org/doi/full/10.1200/jco.2014.56.0607

                "​In summary, we believe that an elevation in AFP of 8 to 25 ng/mL does not necessarily reflect the presence of persistent embryonal carcinoma or yolk sac tumor. These low levels of AFP should not be used as the sole criterion to initiate or continue chemotherapy."
                Age 31 - Portland, OR
                01NOV16- Pain in right testicle, palpable mass
                13NOV16- R I/O. Markers normal
                27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                06DEC16 - CT scan clear
                09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                03JAN17- Ended 1xBEP; start surveillance
                18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                Comment


                • #9
                  Thank You for the replies . The paper about the AFP confirms what I’ve always thought , that my AFP marker is my normal marker , just hovering above average . It will be interesting to see what my AFP is in 6 weeks when I have my check up .
                  Is a change in AFP from 11-12 then next set of blood tests 4 weeks later 12-13 considered a steady rise ?

                  The next question is , if my AFP is slightly above average , what caused the change in size for the two Lymph Nodes ?
                  I can understand my Doctors decision , due to the enlarged nodes , they are very suspicious , there in the area of the left Par-arotic vein , I had a left I/O .
                  They both changed from 7x7mm - 9x9mm , there has being no increase or decrease since the increase in size was first discovered , this is the part that has myself confused & my doctor I guess. .
                  As I said in my initial post , I’ve just finished 3XBEP , nothing has changed regarding the nodes , my AFP has bobbled between 11-13 so far , this is the frustrating part . My body might have gone thru 3XBEP for nothing .

                  I totally understand you guys aren’t Doctors & don’t have all the answers , some people on here seem to very knowledgeable , they seem to have more answers than my own Oncologists . I just feel like he’s reading straight from the text book sometimes & not from past experiences .
                  Last edited by Darwin2015; 12-16-17, 06:13 PM.
                  Feeling confused & frustrated . Looking for some advice .

                  Comment


                  • #10
                    Honestly, I think 7mm vs 9mm is within measurement variability, all things considered.

                    Sad to say, but there are some of us on these groups that, while not doctors, are very well versed in all of this enough to help guide others like yourselves, and flag things when a second opinion with an expert is warranted. Sadly, even though it's the most common form of cancer in young adult men, it's still very rare, and a lot of doctors just don't have all of these nuances fresh in their minds. Most oncologists will see many many breast cancer, lung cancer, prostate cancer, and leukemia/lymphoma type patients before they see even a single testicular cancer patient, if they ever see one at all. My own oncologist here in the DC suburbs in a pretty densely populated area, admitted that his entire group oncology practice might only see a single testicular cancer patient in a given year. It's just not very common in the grand scheme of cancers, hence groups like these, and why second opinions with known TC experts are so important.
                    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


                    • #11
                      This page is pretty amazing , it helps so much . At least it provides me with the questions I need to ask my Doctor each time I see him .
                      In fairness to my Doctor , before making any decision on my case he always confers with other Oncologists in the bigger regional hospitals , they seem to make the decisions as a group . I know they try to follow the best course of action.

                      I will be looking for an outside opinion before any decisions are made on my next step of treatment .
                      Thank you , everyone for your opinions & advice , it means so much .
                      Feeling confused & frustrated . Looking for some advice .

                      Comment


                      • #12
                        Iíve heard good things about Dr Guy Toner - if memory serves me right - from an Australian who had a germ cell tumor. I believe Dr Toner is in Melbourne.

                        Comment


                        • #13
                          Thank you Matt . Much appreciated .
                          Feeling confused & frustrated . Looking for some advice .

                          Comment


                          • #14
                            We NEVER consider AFP levels below 25 as being abnormal so I have zero concern about your past and current AFP levels. Since you had a minimal increase in the size of your abdominal nodes and they were PET positive, not unreasonable to have taken the BEP X 3 . After that chemo there should be basically a zero chance that you have persistent cancer with such minimal disease. From your description we would just recommend routine follow- up. There are testis cancer experts in Australia. I realize it is a big country but if you wanted a second opinion I would recommend Guy Toner in Melbourne.

                            Above is reply from Dr.Einhorn , what a top bloke . Just have to thank you guys for all your advice & help .
                            It makes all the difference having the opinion of a few Doctors when taking the next step forward . Itís put my mind at ease now .
                            Merry Xmas & Happy NY
                            Feeling confused & frustrated . Looking for some advice .

                            Comment


                            • #15
                              Originally posted by MattU View Post
                              I’ve heard good things about Dr Guy Toner - if memory serves me right - from an Australian who had a germ cell tumor. I believe Dr Toner is in Melbourne.
                              One last thing , has anybody got an email add for Dr. Guy Turner Melbourne , Iíve tried google , no luck . Iíll keep trying myself , just if somebody had it saved in a post or mail .
                              Thank you .
                              Feeling confused & frustrated . Looking for some advice .

                              Comment

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