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  • Possible relapse, NEED ADVISE

    Hello all. I need some help with my current situation with my testicular cancer.

    I was diagnosed with pure seminoma stage II B back in early November of 2017. The TC had spread to my lymph nodes and I only had 1 lymph node that was considered bulky which threw me into stage IIB. I did not have any metastasis to my lungs. Shortly after, I had the I/O surgery and went straight into chemotherapy, which started 27 November. I chose to do the four rounds of EP. I found the chemo to be easier than expected. I did not get sick or lose any weight. THey had me on some good steroids and nausea medicine. I was only able to do 3 rounds of the EP due to complications with the port (clotted up in my juglar and another artery) and an infection that nearly closed my airway. So the oncologist does not want to do the last round of EP since it will be 6 weeks between the 3rd and 4th round after I completely recover from the infection.

    Since my oncologist did not want to finish the fourth round, we went ahead and done scans on the 20th of FEB. I had previously done a chest scan while hospitalized for the blood clotting and infection on 30 Jan 2017. That scan on 20 Jan 2017 was 18 days after my last day of chemo curing my third round. It had picked up a nodule in my left lung that was 4mm. During my scans on 20 Feb 2017, my abdomen and pelvic was clear, all of my lymph nodes had melted away back to normal size., but the nodule on my left lung had grown to 9mm in a matter of three weeks. My oncologist thinks it is not related to the cancer and that it is from the infection that I had, which was pretty severe. He find that it would be weird for my chemo to melt away the cancer in my abdomen lymph nodes while a nodule grows starts to grow on my lung either during the chemo or directly after the last dose, especially with me being 100% Pure seminoma.

    Now I am worried and thinking that I possibly have a teratoma tumor or traits which is causing that nodule in my lung to grow,

    What are the next steps to finding out If that is cancerous and related to TC and what would be the treatment options. My oncologist wants to continue to monitor the nodule, but I fear that 1-3 months down the road the scans will show more nodules.

    Any advise or comments would be greatly appreciated.

  • #2
    Your pathology was pure seminoma? I don't think that can transform, so teratoma is unlikely. I would trust your oncologist, it sounds reasonable and here at tc-cancer we have seen lung nodules come and go completely unrelated to TC. If you want to, you can always get a second opinion, there is nothing wrong with that. What is your tumor marker history? That may provide more clues.

    It is known that 3xEP is not as effective as 3xBEP or 4xEP :-(. I can't recall the source but I know I read it somewhere respectable. This aspect is probably worth getting an expert opinion on to see just exactly how it affects your chances given your specific volume of disease. It might only reduce your chance of being already cured by 5%, or it might reduce it by 25%, this is an area where I think the experts will have significantly more data and knowledge as well as knowing the data between statistical points (IE, stage 2b would have a different success rate than stage 2c, but it isn't officially statistically tracked - but an expert could tell you what they feel the difference would be since they have experienced enough cases to subjectively know).
    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!
    9/27/2018 all clears up to this date!

    Comment


    • #3
      Yes it was pure seminoma. Oncologist said my tumor markers are fine, but again I have pure seminoma and tumor markers don't generally spike or elevate. I believe upon initial Dx of TC my tumor markers were at 12.

      I have seen the studies of 3xEP vs 4xEP. I am being optimistic that mine did the job considering I only had one lymph node that was enlarged enough to even throw me into stage IIB. I have also ready some studies that suggest 3xEP is sufficient and that they just tack on the fourth round since you are not doing the Bleo.

      Comment


      • #4
        More likely than not your oncologist is correct. However you have to look at the bigger picture. Tumors markers, night sweats, funky sickness etc...
        Lungs are tricky in general. I had a spot on my lung but nothing else was pointing to relapse, it turned out to be nothing of concern from a cancer stand point. It literally could be caused by you coughing to hard, or being in a dusty enviroment and you have crap in your lungs from it. Multi other things besides seminoma relapse.
        Again look at the bigger picture, blood work, imaging not only picks up cancerous tumors it also picks up other abnormalities. Try and relax and not stress over it. But if you feel that your doctor is missing something or your guy tells you other wise. Ask for it to be investigated more.
        But if i am reading your posting correctly you had an infection in or close to that area with your port. That probably has alot to do with what is going on with your lung. We can not see what infections do on the inside to other parts of our body not just where we think the infection is. Does thay make sense?
        I had thermography done right before i started HDC and it showed an infection in my jaw, you could clearly see the track of the infection going from my jaw all the way down in and around my groin and kidney area.
        Last edited by eodtech2001; 02-27-18, 09:58 PM.
        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

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        • #5
          I would absolutely monitor this, but it seems unlikely that lymph would shrink and disappear and still have the ability to spread. I would be safe and ask Dr. Einhorn his opinion.
          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! 9/12/18 All clears up to here!

          Comment


          • #6
            Originally posted by spence21 View Post
            Yes it was pure seminoma. Oncologist said my tumor markers are fine, but again I have pure seminoma and tumor markers don't generally spike or elevate. I believe upon initial Dx of TC my tumor markers were at 12.

            I have seen the studies of 3xEP vs 4xEP. I am being optimistic that mine did the job considering I only had one lymph node that was enlarged enough to even throw me into stage IIB. I have also ready some studies that suggest 3xEP is sufficient and that they just tack on the fourth round since you are not doing the Bleo.
            Yeah some seminoma's release more bHCG than others, which is why I asked. If your markers were elevated originally (of which 12 is) and are now normal, that is one more data point pointing towards remission, although not conclusive by any means. I think statistically you should be in good shape.
            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!
            9/27/2018 all clears up to this date!

            Comment


            • #7
              An email to Doc E is not a bad idea, IMHO. e will be able to tell you if 3xEP is like.y to have cured you. That said, I doubt the lung nodule is likely to be TC, for peace of mind, you might want to ask about a biopsy.

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

              Comment


              • #8
                Got a question and looking for some answers to hopefully ease my anxiety. I constantly feel around on my deck both front and bad just waiting to find Swollen lymph node. I haven’t found any swollen nodes on the front or back but I did find a knot on the back of my neck approximately around the C4-5 vertebrae. It’s on the right side of my spine. It’s not well defined like a node would be if swollen which makes me think it’s just a muscle. Is it likely for cancer to spread to the neck specifically the back side and to the muscle? Or when it’s in the neck, do u just have swollen nodes and not a tumor as it spreads through the lymphatic system? Has anyone else heard of someone with neck metastasis ? I never had lung Mets and my pathology is pure seminoma. I’ll see my onc for three month check up here in two to three weeks.

                Also (hypothetical) if you had brain Mets where does it spread from the brain next? To the neck if it skipped the neck already and went to the brain?

                Comment


                • #9
                  I've never heard of seminoma spreading anywhere without showing up in the retroperitoneal lymph nodes first.

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

                  Comment


                  • #10
                    It did spread to my retroperioneal nodes but that was he only place upon initial Dx. I had one node there that was of significant size and several others slightly swollen. After chemo they all went back down. Now Iím just stressing so much on whether itís back or not. Every little ache in my back or chest I immediately think itís cancer spreading in my lungs and spine.

                    Comment


                    • #11
                      Originally posted by spence21 View Post
                      It did spread to my retroperioneal nodes but that was he only place upon initial Dx. I had one node there that was of significant size and several others slightly swollen. After chemo they all went back down. Now I’m just stressing so much on whether it’s back or not. Every little ache in my back or chest I immediately think it’s cancer spreading in my lungs and spine.
                      That should get better with time. Keep in mind it is highly unlikely for any seminoma to survive chemo.
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #12
                        Yes, spence21, I know the feeling - it is scary... I found that writing the likely outcomes of what you're feeling and their respective odds on paper helps to put things into perspective - you can visualise it and put worry in its place!!
                        July 2016 - Left I/O
                        December 2016 - BEPx3
                        All clear for 1 year!

                        My Testicular Cancer Support Kit
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