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Devastated, recently diagnosed, enlarged internal iliac node, not sure what to do.

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  • Devastated, recently diagnosed, enlarged internal iliac node, not sure what to do.

    Hello,

    This past 3 weeks have been the worst of my entire life, I'm 30 years old and was recently diagnosed. All my life I've been a hypochondriac, and ironically all my life cancer has been pretty much something I've always feared. Coupled with general anxiety... i'm a wreck, I just haven't been able to function. I haven't been able to get out of bed easily. Without the support of my friends and family I'm pretty sure I would have jumped off a bridge already. There's 0 history of cancer in the family (until now I guess), so this has been a shock for everyone.

    I'm from Mexico, and here's a summary of what has happened (apologies if there are some mistranslated terms).

    ---------------------------------------------------------------------------------------------------
    30 years old, 180 lbs, no history of cancer in the family, no previous major surgery except for aesthetic gynecomastia breast reduction.
    • June 12th: I feel my right testicle is swollen.
    • June 13th: Urologist refers me to Ultrasound and a mass is found.
    • June 14th: Chest and Pelvic CT scan, clear except radiologist notes a 1.6 cm X 1.0 cm "suspicious" lymph node in my internal iliac chain.

    Hgc value: 4.38 U/L
    Afp value: 1.77 ng/ml
    • June 15th: Right Orchiectomy.

    Pathology report:
    Classic Seminoma that infiltrates without perforating tunica albuginea.
    No Vascular Invasion
    Intratubular Neoplasm indifferent from residual testicle
    Epididymis, Rete Testis, Resection Borders negative for neoplasm.
    Tumor Size: 4.3 cm X 3 cm
    pTNM: pT1b, Nx, Mna.

    • June 26th: PET CT and Markers
    Hgc value: 0.92 U/L

    Afp calue: 1.26 ng/ml

    PET CT report:

    Post surgical changes in Inguinal region and scrotal right bag with discrete metabolism increase, without evidence of mass that suggest tumoral activity.

    Absence of locoregional adenopathy and metastatic lesions.

    Lymphatic node of reactive aspect (inflammatory) on right external iliac chain (adjacent to surgical changes). Follow up recommended to watch for evolution.

    -----------------------------------------------------------------------------------------------------


    I have seen 2 oncologists already, first one wanted to do 30 sessions of radiation therapy right away. Second one basically said, not so fast, but I recommend 1x adjuvant chemo.


    The main concern here is obviously the suspicious lymph node. I just want to make sure to do the right thing.

    To be honest I fear chemotherapy so much that thinking about it makes me want to cry.

    This is just so ironic, I've always been obsessive in the sense that I feared even a dental x-ray for the increased cancer risk.... Now I have it and will get CT scans for basically the rest of my life.

    It all happened so fast I still have trouble believing it. I never really planned on having kids but I really want to dedicate my life to my 2 nephews and watch them grow, it's all a blur now. A mix between being in a limbo where everything can be alright but at the same time, end in the worst way imaginable.


    Thanks for reading, any advice would be appreciated.

  • #2
    So without feeding into your fear, 1st off if you dont treat your cancer Your chance survival is pretty low.
    Whether you decide on radiation or chemo both have 95% of cure. The longer you wait the more treatment you will need. Do NOT stress over whether radation or chemo side effects down the road may or may not cause problems.
    Now im gonna say this as a friend telling you what you need to hear not what you want to hear. Get the hell over your fear and save your dam life. You have friends and family that need your help and once you get cured you can pay it forward like alot of us on here do.
    Remember you are not the first nor the last guy to get tc and we have all been scared to death of what comes next. Just dont let your fear paralyze you into doing nothing.
    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
      Originally posted by mextesticle View Post
      There's 0 history of cancer in the family (until now I guess), so this has been a shock for everyone.
      Same here, but after my 1st TC, my dad got pancreatic cancer. After my 2nd TC my nephew got TC. My point is simply that family history means nothing unless there is history of cancer, in which case your odds increase.

      Originally posted by mextesticle View Post
      I have seen 2 oncologists already, first one wanted to do 30 sessions of radiation therapy right away. Second one basically said, not so fast, but I recommend 1x adjuvant chemo.
      I could be wrong, but both of those seem incorrect to me. The radiation sounds like more than needed & the chemo not enough. I would say that tumor is more than just "suspicious" I would want another scan in a few weeks to see if it has grown or shrunk. If it has grown, I would go to 3xBEP. I'm no doc, but that seems to me to offer the best chances. It's not fun, but you get through it.

      I understand you have issues, you might want to discuss anti-anxiety meds with your doc. Some here report they help. Ultimately, as a cancer patient, you need to find a way to deal with your issues. I'm sorry that it might not be easy, but it is necessary. You may find yourself stronger than you ever thought you were by the time you get this solved.

      Dave.

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

      Comment


      • #4
        Appreciate your replies.

        Comment


        • #5
          So sorry! Having anxiety while dx with cancer definitely means considering anti-anxiety meds if you have not. TC is highly curable, hopefully you will be able to consider treatment choices soon.
          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


          • #6
            Sorry to hear about your diagnosis. I'm not real sure why they did the PET/CT after the CT and perhaps those results are confusing the situation a bit too. The CT was before orchiectomy correct? Then the PET/CT is noting that the node is due to surgical changes?

            I would ask my doctors the significance of the node given the size and location. I would ask that without prior scrotal/pelvic surgery, how likely it is that an iliac node is significant (not sure if it is internal or external from the reports) and I would ask if this is a typical landing zone for a right-sided testicular cancer. I would also ask if it makes sense to re-image with CT about 6 weeks from the first CT to see if it has increased or decreased in size.

            At this point it sounds like they are not sure of the significance and for that reason I personally would not want to rush into treatments. 30 rounds of radiation seems excessive even if the node does have cancer. One the other hand given the uncertainty of if the node is an issue or not, receiving carboplatin x 1 seems like under treatment (if the node is an issue) and can further complicate the situation.

            You could ask your doctors to reach out to one of the testicular cancer experts, such as the team at Indiana University, that will help with offering advice. Their contact information are at: http://thetcrc.org/experts.html

            Also, a small but recent presentation showed that even if the node is questionable that starting on surveillance still led to a 100% survival rate and saved 60% of patients from not facing active treatments. http://ascopubs.org/doi/10.1200/JCO.2018.36.6_suppl.560 Again, not a big study but may help ease some anxiety that waiting a little while to make sure what is going on isn;t expected to have an effect on overall survival.

            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


            • #7
              Originally posted by Mike View Post
              Sorry to hear about your diagnosis. I'm not real sure why they did the PET/CT after the CT and perhaps those results are confusing the situation a bit too. The CT was before orchiectomy correct? Then the PET/CT is noting that the node is due to surgical changes?
              Correct, CT was a day before orchiectomy, PET/CT a bit over a week later.

              Originally posted by Mike View Post
              I would ask my doctors the significance of the node given the size and location. I would ask that without prior scrotal/pelvic surgery, how likely it is that an iliac node is significant (not sure if it is internal or external from the reports) and I would ask if this is a typical landing zone for a right-sided testicular cancer. I would also ask if it makes sense to re-image with CT about 6 weeks from the first CT to see if it has increased or decreased in size.
              They said that it's not common, but as always... not "impossible" in terms of a landing zone. The first Oncologist I saw had an assistant (also oncologist) and he suggested a CT in 2 months, but the main doctor and the second opinion doctor didn't suggest it. Regarding it being external or internal, one Dr. said it was basically 2 radiologists seeing the same node but naming it differently, which I think it's correct since I doubt that within 1 week 1 node would shrink and another expand.

              Originally posted by Mike View Post
              At this point it sounds like they are not sure of the significance and for that reason I personally would not want to rush into treatments. 30 rounds of radiation seems excessive even if the node does have cancer. One the other hand given the uncertainty of if the node is an issue or not, receiving carboplatin x 1 seems like under treatment (if the node is an issue) and can further complicate the situation.

              Yeah and this is what scares me the most... It's so surprising to me that I basically have to play part time Dr. and researcher regarding my diagnosis, it's all sorts of messed up and its giving me a lot of anxiety regarding what to do.

              Originally posted by Mike View Post
              You could ask your doctors to reach out to one of the testicular cancer experts, such as the team at Indiana University, that will help with offering advice. Their contact information are at: http://thetcrc.org/experts.html

              Also, a small but recent presentation showed that even if the node is questionable that starting on surveillance still led to a 100% survival rate and saved 60% of patients from not facing active treatments. http://ascopubs.org/doi/10.1200/JCO.2018.36.6_suppl.560 Again, not a big study but may help ease some anxiety that waiting a little while to make sure what is going on isn;t expected to have an effect on overall survival.

              Mike

              I emailed Dr. Einhorn who was kind enough to reply within 1 hour, his response was short, it said: "Doubt this is metastasic seminoma, suggest follow up CT in 2 months."

              However, even though I emailed him the timeline just like I posted it here, i'm not sure if he noticed that the CT scan before orchiectomy noted the enlarged node, and if it could be caused by something else. I really don't feel like emailing him again since I don't want to bother him as I know he gets emailed lots of times.

              Do you think I could personally contact the doctors at the website you stated? I really doubt the doctors i've seen will go the extra mile and contact them for me so I don't feel that's an option. Do you suggest any other particular doctor I could email?


              Appreciate your reply.
              Last edited by mextesticle; 07-06-18, 11:08 PM.

              Comment


              • #8
                I would email Dr. E again, just use his reply & ask for clarification if the enlarged node was ALSO noted on CT prior to orchiectomy, and if it is ok to still wait 2 months to followup.
                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


                • #9
                  Originally posted by Trekga View Post
                  I would email Dr. E again, just use his reply & ask for clarification if the enlarged node was ALSO noted on CT prior to orchiectomy, and if it is ok to still wait 2 months to followup.


                  Well, took your advice and emailed him again, he replied really quickly. His response was:

                  "I would NOT recommend the 1 course of adjuvant chemo. My recommendation remains the same."

                  It's a really hard choice for me since this is the opinion of a Dr. that has physically seen me, but on the other end... I'm aware of who Dr. Einhorn is and his reputation.


                  So I guess I will try to get a high dose xanax prescription and get the CT scan again in 2 months.



                  Thanks everyone for your responses.

                  Comment


                  • #10
                    Personally, it would be easier for me to re-do the CT two months after the original one and spend the time waiting than rush into something that may not be appropriate. In two months it most likely will give you a better idea of yes, it is something and you need treatments or no, it was nothing and you can go on surveillance.

                    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


                    • #11
                      Originally posted by mextesticle View Post
                      It's a really hard choice for me since this is the opinion of a Dr. that has physically seen me, but on the other end... I'm aware of who Dr. Einhorn is and his reputation.
                      Well, think about this, with TC, both docs are really relying on the same test results to make their recommendations. There is little advantage to being physically "seen" by the doc once the I/O is done.It is more about the doc's experience in treating TC patients. I would go with Doc E every time.

                      Dave

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

                      Comment

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