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Nearly 4 years' all clear and then something in my lung starts growing (lobectomy)

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  • Nearly 4 years' all clear and then something in my lung starts growing (lobectomy)

    Hey guys,

    Long time no talk. I was a part of this forum back in 2013/2014 back when I was going through all of the treatment for my IIIB non-seminoma. I had BEP back in summer 2013, then RPLND and orchiectomy in the fall, then the tumor markers kept climbing and I did some salvage chemo (TIP and ATP) through the spring of 2014. In the summer of 2014 I had a wedge resection of my right lung to get a little subcentimeter tumor out. It was a teratoma.

    Since then everything has been pretty much fine. They'd been watching a few spots on my lungs, particularly one on my left hilar lymph node. It was stable and presumed to be a teratoma. I had a scan in March 2017 and it was still stable (0.8 cm on the long axis). I went for a scan in January 2018 and it had grown to 1.6 cm. Had a biopsy last week and they couldn't conclusively say if it was teratoma, so the pathology just said "carcinoma". My oncologist seems to think it's probably a teratoma that is possibly undergoing some sort of malignant transformation. Now I've got a surgery scheduled in a few weeks to get the lymph node and associated lymphatic tissue taken out. In order to do this the surgeon is planning on doing a left lower lobectomy.

    Aside from being a little upset and nervous about having to go through another surgery, I'm also pretty scared about what my life is gonna be like after a lobectomy. I have an appointment with the surgeon next week, but right now I just know what I talked to with the nurse over the phone when they scheduled the surgery. She said to plan on being in the hospital for 5 days. If I'm off of pain meds relatively quickly I can work from home, but don't plan on going into the office for at least a month.

    Then I got to googling about lobectomies, and that definitely didn't help my worries. A lot of people have some sort of chronic pain, some people have to be on oxygen long term, etc. I'm a little worried that I might be overthinking this though. Most of the people who have lobectomies are older and have been smokers for decades. I'm in my late 20's, haven't smoked too much in my life, haven't bummed a cigarette in 6 months, and while I'm not in great shape I can walk up 10 flights of stairs okay.

    So here's my questions: has anyone here (especially a younger guy in their 20s/30s) ever had a lobectomy? what was life like after the lobectomy? how long did it take you to get back to normal? did it hurt more or less than RPLND? is there any long term restriction on the kind of activities you can do? do you get winded easily?

    Thanks,

    -Austin
    Back pain Nov 2012
    Got Engaged 4/27/13
    Swollen neck lymph node 5/13
    Diagnosed with stage IIIB non-seminoma 6/13/13
    AFP 3,511
    Beta HCG 19,482
    Lung and lymph node metastasis
    Large tumor in abdomen caused my back pain
    Testicular tumor could only be seen with ultrasound
    4xBEP 6/25/13-9/10/13
    Graduated college 8/15/13
    Markers normalized
    RPLND and Orchiectomy 11/11/13
    Beta HCG: 38.5 on 12/17/13
    Start 4x TIP 12/17/13
    Got Married on 12/27/13
    Neuropathy: plans change. 3x TIP + 2x ATP

  • #2
    AUSITN~ you have been through a lot. I believe I have come across someone who has had lung surgery on this board in the past year. Hopefully, they will respond. Keeping you in my thoughts.
    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
      Although it may not be the same surgery that you are going to have, but I had a VATS to remove a nodule in my middle right lobe 6 months ago. I hope that my experience can help to prepare the journey ahead of you. It sounds counter intuitive but you MUST follow the breathing exercise on a hourly basis post surgery. Because of the breathing exercise,I was able to go back to the gym to spin for 45 minutes 2 weeks after.

      The toughest experience was the hospital stay and having a chest tube inside your rib cage to drain fluid from the lung. Nevertheless, the pain medication that you are going to take would help a lot.
      6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
      7/2016 - markers normal; confirmed Stage 1B; surveillance
      8/2016 - markers normal
      9/2016 - markers normal
      10/2016 - markers normal; CT scan revealed 3mm lung nodule
      12/2016 - markers normal
      2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
      3/2017 - 3xBEP
      5/2017 - finished 3xBEP
      6/2017 - markers normal; no size reduction in lung nodule
      8/2017 - VATS and markers normal; continue to surveillance
      12/2017 - all clear
      ​3/2018 - all clear
      6/2018 - all clear

      Comment


      • #4
        I have a very close friend who just had tje same thing done. She said that she doesnt really noticed the difference in her lung capacity since surgery. She did say that it sucked post surgery for about a month. But phyiscally she feels fine now and its been about 5 or 6 months.
        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


        • #5
          I had an upper left lobectomy. I'm not quite the same age range, though I was and still am relatively fit.

          Things will change for you, but I'm not so sure about needing to be on oxygen long term. I had oxygen for a short while in the hospital. I would second the notion that breathing exercises are key. Keep the hospital
          stay to a minimum if you can. I was back to work, albeit prematurely, after 4 months. That period surely included recovery from chemo for me . I'm thankfully able to run again. it's not quite the same....slower pace...but you still get the same workout though.
          Aug 2013: vague fevers, exhaustion, weight loss, night sweats
          Sept 2013: became a father
          Oct 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
          Dec 2013: cycle 1, VIP 3wks
          Jan 2014: cycle 2, VIP 3wks, became allergic to polysorbates
          Feb 2014: AFP 813, bHCG: 0, scrapped chemo
          Feb 2014: upper left lobectomy, 7x6x5 cm tumor, teratoma / adenocarcinoma
          March 2014: AFP 70
          March 2014: AFP 19
          Apr 2014: AFP 11 !!!!
          Feb 2018: AFP & scans clear for 4 years

          Comment


          • #6
            I had two lung wedge resections with end stage liver and kidney disease. It just doesn't get sicker than that. To answer your question, do not fear the lung surgery. For young people, this is nothing. I am usually least concerned about surgery compared to chemo. Your body will adapt faster than you think. If there is ever a nerve damage leading to a shooting pain type thing, ask for a low dose Lyrica and you should be OK. The most important thing is to do the breathing after surgery so that you clear the bottom of your lungs off of fluids. The rest of the symptoms will either go away or you will get used to. My question to you is whether HDC with stem cell transplant was ever discussed before the surgical intervention. If not, that might be worth discussing with the centers of expertise.
            Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
            Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
            4*BEP AFP 20 end of 4*BEP
            May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
            Surveillance (blood & X rays) and all clear for 24 months
            April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
            4xTIP - almost normal AFP, but started rising again
            2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
            Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
            2 Lung Wedge Resections -

            Comment


            • #7
              I had my lobectomy 11 days ago and things are going pretty well. The surgery was on a Monday and I was home on Wednesday evening. Iím weaning off of the pain meds now and am hoping to be able to drive in a few more days. It still hurts to cough, and my left arm is weak and hard to reach over my head. My chest hurts a bit too. I get out of breath walking upstairs, but every day is better than the last, so Iím happy with that.

              I finally got the pathology back yesterday and now Iím a little concerned. The pathology said Choriocarcinoma on the big hilar lymph node (the reason we did the surgery). There was another very small tumor in my lower left lobe that they just called ďmetastatic germ cell tumor.Ē The rest of the lymph nodes the surgeon took out didnít have anything in them.

              The weird thing is choriocarcinoma with normal tumor markers. My AFP and beta HCG were all normal back in January. Iím gonna talk to my oncologist today and try to meet with him next week and hopefully do some blood work. Iím a little tempted to go buy a pregnancy test right now.

              What does this mean? Iíve had scans, aside from another little nodule in my right lung, this is the last tumor theyíve been watching on the scans. Would the surgery have been curative, or will I need more chemo? Is this just a teratoma undergoing malignant transformation? Did we cut it out soon enough?
              Back pain Nov 2012
              Got Engaged 4/27/13
              Swollen neck lymph node 5/13
              Diagnosed with stage IIIB non-seminoma 6/13/13
              AFP 3,511
              Beta HCG 19,482
              Lung and lymph node metastasis
              Large tumor in abdomen caused my back pain
              Testicular tumor could only be seen with ultrasound
              4xBEP 6/25/13-9/10/13
              Graduated college 8/15/13
              Markers normalized
              RPLND and Orchiectomy 11/11/13
              Beta HCG: 38.5 on 12/17/13
              Start 4x TIP 12/17/13
              Got Married on 12/27/13
              Neuropathy: plans change. 3x TIP + 2x ATP

              Comment


              • #8
                We met Sean Swarner at the Testicular Cancer Summit last year, and he was amazing. 2x cancer survivor and given basically a death sentence twice. He has ONE functioning lung, but still summited Mt Everest and has done a ton of other things! "Redefine your impossible" is what he says. Don't sweat the lobectomy. You'll be fine!

                Edit: Oh I see you just updated with surgery results. That is strange, but late recurrence testicular cancer can be "different" than when first diagnosed. It's possible they might not have identified the cells correctly in pathology either, so you should request the pathology specimens and get them to MD Anderson, Indiana University, or Sloan Kettering ASAP for them to have a look.
                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


                • #9
                  I talked to my oncologist at MD Anderson this morning. He said my tumor is intriguing. Choriocarcinoma usually grows extremely fast and would cause my beta HCG to double every week. He said there was a European study that showed when there’s only one tumor and it’s under 2cm the cure rate is over 90% with just surgery. I’m gonna do blood work and an appointment with him next week. If the beta HCG is elevated I might need chemo. If it’ís not he’íll just wanna draw blood monthly for 6 months.
                  Back pain Nov 2012
                  Got Engaged 4/27/13
                  Swollen neck lymph node 5/13
                  Diagnosed with stage IIIB non-seminoma 6/13/13
                  AFP 3,511
                  Beta HCG 19,482
                  Lung and lymph node metastasis
                  Large tumor in abdomen caused my back pain
                  Testicular tumor could only be seen with ultrasound
                  4xBEP 6/25/13-9/10/13
                  Graduated college 8/15/13
                  Markers normalized
                  RPLND and Orchiectomy 11/11/13
                  Beta HCG: 38.5 on 12/17/13
                  Start 4x TIP 12/17/13
                  Got Married on 12/27/13
                  Neuropathy: plans change. 3x TIP + 2x ATP

                  Comment


                  • #10
                    Yes, there's much that's still yet to be understood when it comes to late-recurrences and how these cancers are different than the primary cancers.
                    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
                      Had the blood test last week and Iím almost done recovering from the lobectomy. Tumor markers werenít elevated which was confusing. Iíll do a CT scan and more blood work in a month. Iím recovering pretty well from the lobectomy. I decided to take a 5th week off because Iím still having a few issues with muscle spasms thatís keeping me from being able to go the whole day without opiates. As long as I donít exert myself too much I can make it almost to bed time without opiates.
                      Back pain Nov 2012
                      Got Engaged 4/27/13
                      Swollen neck lymph node 5/13
                      Diagnosed with stage IIIB non-seminoma 6/13/13
                      AFP 3,511
                      Beta HCG 19,482
                      Lung and lymph node metastasis
                      Large tumor in abdomen caused my back pain
                      Testicular tumor could only be seen with ultrasound
                      4xBEP 6/25/13-9/10/13
                      Graduated college 8/15/13
                      Markers normalized
                      RPLND and Orchiectomy 11/11/13
                      Beta HCG: 38.5 on 12/17/13
                      Start 4x TIP 12/17/13
                      Got Married on 12/27/13
                      Neuropathy: plans change. 3x TIP + 2x ATP

                      Comment

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