TMC Posted March 13, 2020 Share Posted March 13, 2020 Ok, I'll start off I'm not good at writing or this forum stuff. I'll try not to ramble. We had our follow up appointment with our - Csurgeon today and had a "set back" but I'm not gonna say bad news, just a set back. But we were disappointed. I think I'll try to list our test chronologically first then get to the meat of this post.. Feb 11 X-ray due to long term cough (9-12 months) Feb 12 - Dr called - large mass on xray Feb 14 - CT Scan - dr said most likely lung cancer - referred to Pulmonologist Feb 18 - Met with Pulm. dr Feb 21 - Bronchoscopy Feb 24 - PET CT Scan March 3 - Mediastinoscopy March 5 - Lung X-ray and VQ Scan March 6 - Brain MRI March 9- Met Medical Oncologist March 10 - Medical Oncologist presented my husbands case to the Tumor Board March 12 - another CT scan with dye to look at a certain area they were concerned with then met with surgeon afterwards Ok so quick recap---He's 2b- everything has come back clear as far as spread of cancer.. other than the nodes in the lung that they can't actually verify are cancer free unless surgery is done. Other than that no cancer is seen anywhere other than a very large mass that takes up most of his upper right lung. Everything looked good for surgery except for one thing ...the location of the tumor and not being able to see a certain part. So now I'll break it down to how we understand it... the tumor is pushing up against the Superior vena cava to the heart. The mass is large and they cannot get a "clear" picture to ascertain if the tumor is just "pushing" against the SVC or if it's attached. They said we only have ONE chance at surgery and if it is actually "attached" then surgery is definitely out of the question. So they have to be absolutely certain it's not attached. So only other option is chemo and radiation to hopefully shrink the tumor and do another CT scan in afterwards and hopefully be able to see that it was only pushing against and not attached. Oh and the tumor had grown since the first ct scan on 2-14. So now we meet with the medical oncologist again on Tuesday and waiting on the radiation oncologist to call us with an appointment. My husband is really worried about the chemo & radiation but we don't even know what that entails yet. Needless to say, we are in another holding pattern and it's frustrating him so much. He just really wanted them to say "we can cut this on Monday" I know this was long but I hope someone will read this and give us some positive hope! Again, thanks for listening T Link to comment Share on other sites More sharing options...
Babs Posted March 13, 2020 Share Posted March 13, 2020 Hi T, Maybe I can help a little. I was diagnosed in August 2019 with NSCLC squamous. They found a very large mass in my mediastinum that they thought was partially blocking my Superior Vena Cava. I met with the Thoracic Surgeon who scheduled surgery for the next morning, only to be called later that night calling it off. He looked closer at my CT and decided surgery was too risky. He then determined my SVC was completely blocked from the tumor and my blood had rerouted via my other veins in my chest and to do surgery was compromising that route. I did the Radiation/chemo and just had my 9th treatment of Durvalumab. My SVC is still blocked only now from what was the tumor, now scar tissue free of cancer cells. My Onc and I have discussed the possibility of a stent opening that vein up if I should have any serious effects from the SVC still being blocked, but so far a little shortness of breath and fatigue, but that could be from the Durva as others I believe are experiencing the same. I know how hard this is and frustrating to keep waiting for something to happen. There is success without surgery even though I know that would be the preference. 😒 Take care, Babs Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted March 13, 2020 Share Posted March 13, 2020 Hi TMC ... sorry about the news and the additional waiting ... seems like cancer patients are always waiting. My limited experience is with my wife's SCLC so my take should be tempered by others more experienced with NSCLC. From what I read, radiation and chemo might be given anyway to kill any of the possible unseen cells "floating" around. Your husband is just getting a head start on it. AND the primary tumor may shrink enough where surgery is still possible. I think this is positive and your husband has a great chance at a cure. Steve Link to comment Share on other sites More sharing options...
Susan Cornett Posted March 13, 2020 Share Posted March 13, 2020 My process started off wonky so I don't have personal experience, but it's my understanding that a lot of the docs use chemo and radiation to shrink the tumor before surgery. Paula C can speak to that. I had surgery first and then chemo. I didn't have radiation until my first recurrence. I know this process is frustrating - scans, wait, appointments, wait, labs, wait. But it sounds like he's got a good team working on a solid plan. I think the best takeaway here is that it hasn't spread. Please keep us posted. Link to comment Share on other sites More sharing options...
TJM Posted March 13, 2020 Share Posted March 13, 2020 TMC So sorry to hear this news. I doubt very much you will have to wait very long based on how fast they have been treating you so far. I know there are numerous people on this board who have followed the Chemo/rad prior to cancer route successfully. I am sure someone will comment on that. As for Chemo, based on my first cycle it has been much better than I had feared. I was more concerned about chemo than surgery. But so far it's been great and they treat patients exceptionally well. I know its impossible, but try to look at the positives. Still stage II, still no spread and zero reason to think Chemo wont shrink the tumor. I'll be thinking of you and wishing only the best. Peace Tom Link to comment Share on other sites More sharing options...
TMC Posted March 13, 2020 Author Share Posted March 13, 2020 wow! I LOVE this forum!!! All of you are so kind and I'm going to share all the comments with my husband this morning. I'm sure it will help him out of this disappointment he's feeling right now (and take some of the worry of chemo away) Thank you all! T Link to comment Share on other sites More sharing options...
Scruboak Posted March 13, 2020 Share Posted March 13, 2020 I just read Tom Galli's book "Scanxiety". His is a journey that all of us can read to boost our hope for this frustrating time in our lives. I believe also that he had to do radiation and chemo first. Love to you and your husband. Link to comment Share on other sites More sharing options...
Tom Galli Posted March 13, 2020 Share Posted March 13, 2020 TMC, I had pre-surgical chemo (6 infusions of Taxol and Carboplatin) and fractional radiation (30 sessions of conventional radiation) before surgery to remove my right lung. This treatment shrunk the tumor enough to clear involvement with the trachea. Then I had a pneumonectomy and my surgery was a complete success. I would have had post surgical chemotherapy but for a visit from a well intended neighbor whose child had a cold. I promptly caught it and developed a high fever that landed me back in the hospital and onto a multitude of surgeries. My case is an unusual one, but my suggestion is to steer clear of everyone when receiving chemo and recovering from surgery. As lung cancer survivors while in treatment, we are very vulnerable to catching the illness of the month and if we catch it we are likely in for a long hospital stay or worse. In fact, I just received a call from my oncology clinic rescheduling my Monday appointment to September because my oncologist is under quarantine. I haven't left the house for a week and we are cancelling a Greek Isle cruise to depart on May 3rd. Catching Coronavirus would be a life threatening situation for me. Pre-surgical chemo and radiation can work and permit a successful surgery. Ensure your husband stays away from children, crowds, and sick people. Stay the course. Tom Link to comment Share on other sites More sharing options...
TMC Posted March 13, 2020 Author Share Posted March 13, 2020 Thank you! I will make sure we take all precautions! I also showed my husband your response so he'll know how serious he will need to be in taking precautions Link to comment Share on other sites More sharing options...
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