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Inoperable Chest and Lung Disease

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  • Inoperable Chest and Lung Disease

    Hi All,

    I introduced myself 4 months ago. I am the mom of a 17yo with stage 3C mixed germ cell TC metastasized to liver, lungs, chest, neck and abdomen. His largest mass was in the abdomen and was 16.5 cm. Original tumor markers were HCG 256, LDH 750, AFP 36,960. Josh received BEPx4. The masses in the abdomen and neck did not shrink. The chest and lung nodules shrunk slightly. His tumor markers all normalized. His AFP had hit a high of 40,455 one week after starting treatment. It declined steadily and was 5.6 (finally normal) 3 weeks after final chemo.

    We traveled to Indiana and saw Dr. Einhorn two days ago for a pre-OP meeting before having RPLND and Mediastinal Dissection by doctors Cary and Kesler. Surgery was extensive and a lot of blood vessel reconstruction, but they got all the masses out of the abdomen and lower chest cavity. All masses appear to just be mature Teratoma.

    Dr. E confirmed that the latest scans show the liver is now clear. He mentioned that the lungs have a lot of "shirt button" size spots. I know from his latest scan there was one 15mm nodule and the remaining were 9mm or less on the last scan. The radiologist had notated 10 nodules all together on his report. Dr. E had mentioned we would most likely need a total of 3 surgeries (first one was yesterday) . He mentioned that the chest they would most likely watch over the next few months and make a determination later if surgery was needed after all the Teratoma was removed from his abdomen, chest and neck, which would take multiple surgeries.

    We actually JUST met Dr. Kesler today post surgery when he did rounds. He was unable to meet with us pre or immediatley post surgery due to other surgeries. He is a very short and to the point man, but we have been told he is a highly sought after expert in the field. We know he is who we need on our case. However, in the briefness of the meeting, we are left with more questions than answers. He basically ended our 3 minute conversation by handing me a card and saying get a scan in a month, FedEx it to me and then come see me to decide what we can and can't do next.

    He did agree the bulky nodules in the neck and upper mediastinal cavity are likely Teratoma and should come out. He also said that the 15mm lung nodule is right on the cusp of size that requires removal. The part that I am concerned and confused about and coming to you all about is new information to us.

    He said that where the bulky mediastinal tumors branch out into the chest, it then gets very widely dispersed and diffused and cloudy and does not look like Teratoma. He said it is deep within the chest and lung wall and he is unsure about it other than it is much too vast and extensive to be operable. He literally crossed his fingers and said "I'm hoping it is just scar tissue. I'm really hoping, HOPING, that's all it is." Previously we knew about the 9 or 10 nodules (all but one measuring 9mm or less), but radiology never mentioned anything about all this "widely dispersed, diffused, extensive" area in the chest"

    What can anyone tell me about scar tissue, watching the lungs, concerns or feedback? Also, Dr. Kesler will come by again tomorrow on rounds as Josh is still in the ICU recovering. Any further questions I should be asking? I know he won't give me long, he is brief and to the point. I wish we were seeing Dr E again so I could pick his brain further, but that was only pre-OP for now. Follow up with him probably isn't for a month or so. Thanks for any advice and input!

  • #2
    Doc E is very good about answering emails. With a case this complicated, you should email detailed questions to him. Fortunately, for most of us, cases rarely get this far so we really don't have a lot of experience to offer. That does not mean we don't care, please keep us updated as you learn more.We are all hoping to hear good news soon.

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


    • #3
      Agreed - the best counsel you can get is from the specialists. Best wishes to you and Josh and the rest of the family. We'll be rooting for you, and are eager to hear how things develop!
      Painless lump 5/18/2017
      Orchidectomy June 2017 (4.5cm, rete testis involvement)
      Chemo Summer 2017 (2x7AUC carboplatin)
      No evidence of relapse since, but plenty of anxiety about it.

      I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.


      • #4
        Dr. Cary is absolutely the best doctor I have ever met in my life HANDS DOWN. Not only is he amazing at what he does, but his bedside manner is unreal amazing. He came in for rounds this morning and asked if we had met Dr. Kesler yet. When we told him we had, but were left with more questions than before we started, he leaned against the wall, folded his arms, and said, "let's talk. What are your questions". After 30-40 minutes of dialogue, including him reviewing scans with us (he did this unprompted), we have a much better handle on what is going on, so I thought I would update.

        The white fluffy area that Kesler is hoping is scar tissue is located extensively around the Hilar nodes as they enter the lungs and also more behind the heart. In his opinion, it is scar tissue, but biopsy is not an option to confirm, so watch scans and AFP over the course of months will confirm the supposed scar tissue. If it is not scar tissue, then the only other thing it could be is cancer cells. Since we have a normal AFP of 5.6, if it was cancer cells they are most likely "stunned" by the 1st course of treatment and currently inactive. He leans toward it more likely being scar tissue. The scar tissue is NOT in the lungs, it is all around the Hilar and blood vessels leading into the lungs.

        The reason why surgery on the lungs is a wait and see ticket on the treatment protocol is for several reasons. First, the remaining larger areas of mature Teratoma have a higher priority on the schedule. They already know that is the next course of action and will happen somewhere between 5-8 weeks from now. In that time frame, the lungs will have more time to do whatever they are going to do; whether that be stay the same, grow, or shrink. Nothing in the lungs is at a super concerning size right now, with the exception of one nodule at 15mm (the rest being 9mm and under).

        If everything in the lungs stays relatively stable, then the thinking is removal is counterproductive. Reason being is that there are multiple small nodules in the mediastinal area that are currently safer to leave then remove. If we are going to leave those nodules in the mediastinal, what would be the purpose of chasing after "shirt buttons" (Dr.Einhorn's description of the lung nodules) and putting him through surgery. According to Dr. K last night, the policy of leaving nodules under one centimeter stands for the lungs as well.

        So, overall, Dr. Cary felt we had every reason to be encouraged and hopeful for a full recovery. He said that given the degree of his disease at diagnosis, the very fact that we are where we are after only his first course of treatment is very encouraging. He said many patients in his situation only have partial, or even no, response to treatment after 1st stage and go on to have salvage, salvage plus stem cell, and an additional stem cell before reaching surgical stages of treatment. So, while we have some very real chances of relapse (30-60%) due to the amount of remaining nodules and the suspicious cloudy area, we still have many levels of treatment options ahead. In fact, even the appearance of new or growing Teratoma, while most likely necessitating surgery, does not indicate salvage chemo unless his AFP also rises.

        So, while we were hoping to reach the No Evidence of Disease stages sooner, rather than later, we are no where near being down and out. Thanks for all your kind words and help.


        • #5
          Thinking of both of you- my son was 18 at time of diagnosis. Stage IIC. If you would like to talk please message me. Best wishes for a speedy and healthy recovery!


          • #6
            Glad to hear your questions were answered!

            I'm not sure I met Dr. Cary when I was at IU. But Dr. Foster had a very similar outgoing, warm bedside manner. If I recall correctly my RPLND was on a Friday, and he did his rounds late Saturday morning in his golf apparel having just finished a round. He was willing to answer all our questions and spend whatever time needed until we were comfortable. He no longer performs surgery but I'm sure he is still side by side with Dr. Cary and Einhorn in some of the research and teaching they do at IU.
            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: begin 4xEP, end 9/18/15
            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!
            10/22/19: all clears up to this date!


            • #7
              Just an additional update. We are still in the hospital and will be until at least Thursday. Mainly because Josh has had a very difficult time with gastro issues. He has been put on a liquid diet for the next few weeks and if he can go the next 72hours without puking, we can go home.

              The good news so far has been twofold. One, his AFP came back at 2.1! His HCG dropped to 0.7 as well. The other really good news was that all the massive tumors that were removed came back as 100% mature Teratoma. No live cancer cells!