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  • Another Recurrence

    Hi all,

    Well I have some unfortunate news I wanted to share with everyone, but I do have a positive take on it. Some of you might remember me, I am an infrequent poster over the years. I completed High Hose chemotherapy in January of 2015 to cure a post-BEP recurrence of seminoma.

    In march of this year, I started getting severe headaches that were progressively getting worse. In addition, I was losing my ability to understand what I read, which was a huge red flag. My doc decided to do an MRI just to see what was going on, but no one was thinking cancer. I went in, had the MRI, had was informed that I had a large (10 cm) brain mass that needed to be removed in the hour. As you can imagine, it was a frantic and emotional day. This was Friday.

    They were able to remove all of the tumor, but knowing that there are unavoidably unremovable microscopic parts that will need to be radiated. The pathology results came back positive for seminoma. This is highly unusual, but I have been speaking to Dr. Einhorn about it. He has said he has never heard of seminoma recurring in the brain after high dose. This is unprecedented. However, because of the blood brain barrier, this does not exactly constitute a recurrence (meaning there are viable treatment options open to me). He is still giving me a good prognosis.

    I did an MRI of the spine, and the initial reading of it shows no signs of metastasis, which is a great thing. I will do a PET scan today of my entire body to be sure of what is going on. If those go as expected, I will start brain radiation (either focal or entire brain) in a few days at MGH. Dr. Einhorn will be advising (he is such a saint).

    I am feeling positive and I am hoping for a smooth recovery. I also decided I would really like to be done with cancer for awhile. I am in year 5, and looking forward to no more recurrences!

    Will keep you posted. Cross your fingers for clean scans!

    Conor
    9/27/2011 - Mass detected
    10/4/2011 - Left I/O; Seminoma; Stage I
    11-12/8/2011 - Radiation therapy
    2012 - 2013 - Surveillance
    2/6/2014 - bHCG 7.3, then 9.2
    2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
    2/17/2014 - 3xBEP
    5/12/2014 - Tumor completely resolved
    9/12/2014 - New nodule on CT scan
    11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
    12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
    1/16/2015 - Tumor completely resolve!
    3-6/2016 - started having severe and worsening headaches
    6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
    8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

  • #2
    Conor,
    Really disappointing news But great that they've been able to operate and remove the tumor, and good news that Dr. E is on your case. Fingers crossed for you.
    DZ.

    Jan 2009: RHS (Seminoma) & RT
    Mar 2010: LHS (Embryonal Carcinoma)
    Sep 2010: Relapse & 3 x BEP
    Mar 2015: Five years "nut free"
    http://doublezeroami.blogspot.com

    Comment


    • #3
      Sorry to hear that, best of luck getting through this!
      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


      • #4
        So sorry to hear Conor. I've never seen anything like this. It's always reassuring that Dr E is involved. It must be so hard to let your guard down after all these recurrences. Your seminoma appears to be unusually resilient. Hope the radiation goes well and there are no more setbacks.
        Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

        7/1/2015: felt tiny lump on side of R testicle
        7/30/2015: Ultrasound shows 2 intra-testicular masses.
        7/31/2015: tumor markers normal, CXR clear
        8/5/2015: R orchiectomy
        8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
        8/14/2015: CT abdomen/pelvis clear, Stage 1b
        8/24/2015: started 1 x BEP

        Comment


        • #5
          That must have been terrifying - and I'm so glad you've recovered ok from surgery and are able to post to update us. All the best for the future scans and treatment.

          - T
          30 Jul 14: Discovered lump
          31 Jul 14: GP referral to specialist
          4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
          8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
          29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

          24 Sep 14: Started precautionary adjuvant 1xBEP
          23 Oct 14: All clear; on surveillance

          Comment


          • #6
            My heart goes out to you...that is scary, but the surgery was a success. Glad to hear Dr. E is on the case, and am hoping the radiation will do its job.


            -Ed
            March 2016: Right IO, Stage 3B Embryonal with bulky mass in retroperitoneum
            April-July '16: 4xBEP, AFP ~1800,
            August '16: PC-RPLND --> Only teratoma found
            September '16: Markers negative, ALL CLEAR, Surveillance!

            Comment


            • #7
              Thanks everyone, it means so much. I do have a small update.

              I was discharged from the hospital yesterday, and we drove back to Boston today (8 hours away, but where I live and will do treatment). It was an easy drive luckily. And I felt the best I have felt since the surgery today. Very, very thankful.

              But I got better news in the car. The doctors from where I had my surgery called with results from a PET scan and an MRI of the spine. A PET scan checks the entire body, and the MRI was just to get a better picture of my spine given the location of the tumor. The MRI came back normal--it looks like a 27-y/o back with NO signs of cancer. The PET scan also revealed NO signs of cancer. I spoke to Dr. Einhorn about it, and he was very happy. He said I am disease free from the neck down.

              Basically, everything is going best case scenario since the initial shock. On Tuesday we will meet with the new doctors to discuss treatment options, but it seems like it will be straightforward radiation. Will keep you posted, but happy, happy day today (I was a little nervous).

              Thanks everyone for their support. Wishing you all health, happiness, and strength!
              Conor

              9/27/2011 - Mass detected
              10/4/2011 - Left I/O; Seminoma; Stage I
              11-12/8/2011 - Radiation therapy
              2012 - 2013 - Surveillance
              2/6/2014 - bHCG 7.3, then 9.2
              2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
              2/17/2014 - 3xBEP
              5/12/2014 - Tumor completely resolved
              9/12/2014 - New nodule on CT scan
              11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
              12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
              1/16/2015 - Tumor completely resolve!
              3-6/2016 - started having severe and worsening headaches
              6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
              8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

              Comment


              • #8
                Great update, Conor - really pleased with your news! Please keep posting with your progress.
                DZ

                Jan 2009: RHS (Seminoma) & RT
                Mar 2010: LHS (Embryonal Carcinoma)
                Sep 2010: Relapse & 3 x BEP
                Mar 2015: Five years "nut free"
                http://doublezeroami.blogspot.com

                Comment


                • #9
                  Thanks!

                  Also, any tips for radiation on the brain? I did radiation in 2011 on my abdomen and had no major problems with it. Not sure the differences here. Also tips for/from caregivers would be greatly appreciated!
                  9/27/2011 - Mass detected
                  10/4/2011 - Left I/O; Seminoma; Stage I
                  11-12/8/2011 - Radiation therapy
                  2012 - 2013 - Surveillance
                  2/6/2014 - bHCG 7.3, then 9.2
                  2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
                  2/17/2014 - 3xBEP
                  5/12/2014 - Tumor completely resolved
                  9/12/2014 - New nodule on CT scan
                  11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
                  12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
                  1/16/2015 - Tumor completely resolve!
                  3-6/2016 - started having severe and worsening headaches
                  6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
                  8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

                  Comment


                  • #10
                    Afraid I have no knowledge on radiation, But glad to hear things seem to be going in the direction we like to see. I hope it continues to do so.

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

                    Comment


                    • #11
                      Thanks, Dave.

                      Just an update on where things are. The doctors want to try to determine if a particular complication is happening (which I will not name at this moment because there is not a lot of literature on it and none specific to seminoma). But basically, I am going to do up to three lumbar punctures (spinal taps). I have read that those are not too bad. Each one has to be scheduled after the previous has been resulted. Hoping to get the first one done this week, but it could take up to two weeks. Waiting is the worst, but there it is.
                      9/27/2011 - Mass detected
                      10/4/2011 - Left I/O; Seminoma; Stage I
                      11-12/8/2011 - Radiation therapy
                      2012 - 2013 - Surveillance
                      2/6/2014 - bHCG 7.3, then 9.2
                      2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
                      2/17/2014 - 3xBEP
                      5/12/2014 - Tumor completely resolved
                      9/12/2014 - New nodule on CT scan
                      11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
                      12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
                      1/16/2015 - Tumor completely resolve!
                      3-6/2016 - started having severe and worsening headaches
                      6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
                      8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

                      Comment


                      • #12
                        Hi Conor, i was diagnosed with pure seminoma as you, in my case Oct 2015 (so it's recently); it's the first time that i have written in this sub-forum (before i wrote in 'Just Diagnosed with Testicular Cancer -- What's Next?' im am expectating of your updates, and i hope everything will be ok, please keep us update because it matters to me and the rest of your readers.
                        Good wishes from Spain. Un saludo amigo.
                        22/10/2015: Diagnosis: pure Seminoma hcg 13268/ 20x25 mm mass in my left testicle
                        23/10/2015: Left orchiectomy
                        28/10/2015: TC torax/abdomen/pelvis 3 focal liver lesions (0,7cm, 0,7cm and 1,0cm)
                        18/11/2015: started 4xBEP treatment
                        31/01/2016: finished 4xBEP treatment

                        Comment


                        • #13
                          Thanks, Nito! I will be sure to post an update when I have one. Hope you are doing well--happy almost 6 months post-BEP!!
                          9/27/2011 - Mass detected
                          10/4/2011 - Left I/O; Seminoma; Stage I
                          11-12/8/2011 - Radiation therapy
                          2012 - 2013 - Surveillance
                          2/6/2014 - bHCG 7.3, then 9.2
                          2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
                          2/17/2014 - 3xBEP
                          5/12/2014 - Tumor completely resolved
                          9/12/2014 - New nodule on CT scan
                          11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
                          12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
                          1/16/2015 - Tumor completely resolve!
                          3-6/2016 - started having severe and worsening headaches
                          6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
                          8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

                          Comment


                          • #14
                            Sounds like you have been through quite the battle! Sounds like things are going well though from what you say! Stay strong!

                            Comment


                            • #15
                              Thanks, Moose I appreciate it!

                              I just want to post an update/rant as I am feeling a bit frustrated and down right now. Things are moving very slowly, and at first I was tolerating that by saying my doctors are being thorough. Now, I feel like a lost cause...

                              Last week Monday, they did a lumbar puncture and the results came back on Friday. Before I get to the results, the actual LP was horrible (something I was not expecting). Ended up that my spinal fluid continued to leak, so I had headaches and pain whenever I sat up or moved for a week. Luckily they did a blood patch on Monday of this week, and that seems to have fixed it. Physically, I feel much better.

                              However, they found concerning, though not necessarily confirmatory, results on the LP. Specifically, they found an atypical (not necessarily cancerous cell) but I believe under the microscope it was consistent with seminoma (not entirely clear here, people have not been in touch with me). This is leading them to believe that the cancer has, in fact, spread to my spinal fluid. Extremely rare, if not entirely the first documented case, for a seminoma patient.

                              In addition, on my last PET/CT scan about a month ago, they found a 2mm nodule in my right lung (everything else up until now has been on my left side). At first, no one was concerned with this and now everyone is extremely concerned given about it. We are to do a repeat CT soon to see if it has grown. Before, Dr. Sweeney was confident that we had a chemo mixture we could do should it be cancerous. Now, with the news of the cancer possibly being in the spine, I haven't heard from him and I can't shake the feeling that he thinks I am terminal now.

                              The reason that is a serious concern is that if the cancer is in my spine, then I have something called leptomeningeal disease, which is a rare type of disease progression to the spine and lining of the brain that can happen with any cancer. It is a terminal diagnosis, but it is terminal because typically the cancers that progress to leptomeningeal disease are breast and lung cancer, and the amount of radiation necessary to treat them would also be fatal to the patient. This is not the case with seminoma, which makes my radiologist oncologists feel that they can cure my in this case. However, the medical oncologists are not so certain.

                              Anyways, I got the results via online patient portal on Friday, and then all the doctors seemed to go silent. My radiologist oncologist called late that night to tell me the news, that it wasn't conclusive but it was definitive enough to warrant going with the more aggressive treatment (proton radiation of the entire brain and spine over 9 weeks) but that the doctors were still talking and wanted to learn more about the nodule in my lung. He said other doctors would be in touch. Hadn't heard from my medical oncologist (Dr. Sweeney) by Tuesday, so I messaged him asking if we could talk to discuss the results. He gave a clipped response back saying that the results were concerning and someone from his office would be in touch with me to schedule a CT scan. That didn't happen, and I am not sure why it is taking so long. The waiting is very hard on me this time.

                              Trying to be patient but not negligent. Everything is confounded by, in addition, that I am starting to feel symptomatic again (by again, I mean symptoms I was having pre-surgery are returning). Though, I am not sure what it is from, it could be from the LP. But I get an ache in my upper arms, and I feel like the sensation in my feet and hands is less. This would be consistent with leptomeningeal disease and about on schedule. Trying not to overthink it.

                              Anyways, it seems like I will do that radiation, the biggest crux is the lung nodule. On anyone else, they would not be as concerned about a 2mm lung nodule, which is incredibly non specific. But given my history, they are concerned. As am I, so I appreciate it. But I have the sense that whatever that lung nodule is, my entire outcome and treatment plan is hinged on it. Chemo might be an option, resection might also be an option, but it could also swing me from potentially curable to definitely terminal. And that is weighing heavily on my mind lately.

                              Thanks everyone, I needed to unload a bit and this is the safest/best space for me. So sorry to see so many people here, but everyone is so inspiring. Thanks for making this space great.
                              9/27/2011 - Mass detected
                              10/4/2011 - Left I/O; Seminoma; Stage I
                              11-12/8/2011 - Radiation therapy
                              2012 - 2013 - Surveillance
                              2/6/2014 - bHCG 7.3, then 9.2
                              2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
                              2/17/2014 - 3xBEP
                              5/12/2014 - Tumor completely resolved
                              9/12/2014 - New nodule on CT scan
                              11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
                              12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
                              1/16/2015 - Tumor completely resolve!
                              3-6/2016 - started having severe and worsening headaches
                              6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
                              8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

                              Comment

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