LA NYC

Debbie, Wishing you all the best on PET Scan. I’m so glad you reached out, as everyone here is so wonderful and they’re all giving you their experienced advice and knowledge. Rooting for you. Best, Lori

Hi Debbie, I’m so sorry for all your wait and worry. If you do want to “ take the ride”, ( probably an hour and 45 minutes!) I would still recommend your coming into the city and making an appointment with either NYU or NY Presbyterian. Both hospitals have the latest equipment, scanners, and teams of doctors highly specialized in Lung Cancer treatment. I have a wonderful Pulmonologist that took my case very seriously and then referred me to a top Cardio-Thoracic Surgeon(who I will be having surgery with in 2 weeks) They work together as a team, and I know I’m in great hands and my worries are eased. They are also warm and personable, take time with you, give helpful, knowledgeable, experienced information to help you make the best decisions going forward. Being new to this board myself, I’m not sure if I can post the Dr.s names here, if so, and you would like them, I’d be happy to share that with you. Will be keeping you in my thoughts. Glad you reposted. So many wonderful, supportive people here. Best, Lori

Hi Debbie, I’m pretty new to this forum myself, and I understand your worry and concerns. I’m sorry you are going through this and am sure you want to get on this right away. I don’t know how close you are to NYC, but I am currently working with a fabulous Pulmonologist and Cardio-Thoracic surgeon at New York Presbyterian/Weill Cornell. I started at NYU Langone in Manhattan, and they too have highly skilled Pulmonologists and Surgeons. Both Hospitals have doctors that work together in a group effort in providing you with full service care. the members of this forum have been so helpful. A wonderful group of knowledgeable people. I believe your post is on a thread of a previous poster though. You may want to repost under your name in this section to be seen sooner. I am sure you will get more responses that way. My best to you. And if you decide to come to NYC for scans or treatment I can give you names. take care, Lori

Lou, How did your scan go on Monday? Maybe you posted somewhere else? Hoping you got great results! all the best, Lori

Yes, Bridget, such great info. So glad I found all of you.😊

Thanks for posting this info Judy. Seems very informative. 🙂

Hi Justin, I do hope you’re feeling better now that you are on the anti-seizure meds and steroids. Wishing you all the best💜 Lori

Thank you Judy! I’m glad the bronchoscopy went well for you and was successful. It seems like a mixed bag whereas some get a diagnosis from it and others procedures are inconclusive. The location of my nodule made it challenging, and surgery seems like the best option at this point. i hope your feeling well. Thanks for the good luck wishes. my best to you for continued good health☺️ Lori

Hi Justin, me again, 😏, I think I misunderstood and realize now your diagnosis WAS cancer related, so sorry again that you had to go through the back and forth and runaround. We really do know our own bodies, what’s happening and do have to advocate for ourselves. I’m glad you were persistent and really hoping you’re feeling much better now. Have a great day and week. be well, Lori

Hi Justin, Sorry I missed your reply earlier, I’m still learning how to navigate these boards and how to see and reply properly! sorry too, that you’ve been given the runaround and had to go back and forth with your doctors to get answers and resolve. How frustrating and nerve wracking that is! I am glad to hear that it’s not cancer related( whew!) and hope the meds you’re taking are working and that you’re feeling much better. best to you, Lori

Lou, this SO very helpful. Thank you so much for all this wonderful information. It really helps tremendously to know what to prepare for! I’m going to order a wedge pillow right now! ; ) I too, am an active, over achiever. I will be sure pace myself now after reading of your experience! Best to you and best of luck on Monday! Lori

Lou, Thanks you so much. Your first sentence completely describes what my journey has been on all this for the past year and a half. I feel after hearing all your stories that yes, this is the best decision. Just get it out and find out. I’m so happy to hear that you’ve been NED ever since your VATS surgery and I look forward to reading your blog and will do that right now. I will be wishing you all great thoughts on Monday and look forward to your writing after and letting us know that you continue to be NED! All the best to you! Lori

Walfredo, thanks you for telling me of your experience and giving me your thoughts. After hearing of yours and others non diagnostic bronchoscopies,I believe now I’m making the right decision. When my Pulmonologist said he “thinks” he can reach it with bronchoscope, it didn’t leave me feeling confident about going through another procedure that may fail. Like you said, it would just be stressful waiting for the next thing. what did you eventually have done to make your diagnosis? And how are you doing now? I do hope that you’re feeling much better and wishing you the best. Again, thank you. Yours and others stories have been so helpful. take good care, Lori

Justin, thanks so much, as always, for the good wishes and support. How did your talk with your doctor go? I hope you’re doing ok and am sending good health wishes to you! best, ☺️ Lori

Tom, wow!! 8 Bronchoscopies! I’m so sorry for all you’ve been through with them. You’re certainly the authority on everything Bronchoscopy. I do hope that’s the end of those procedures for you, and am happy to hear you have a trustedThoracic Surgeon to get you through it all with minimal side effects. After talking with Pulmonolgist and a couple of friends who are cancer survivors, I decided to go with VATS surgery. I realize it’s best to just get it out now while it’s small and not risk another procedure that may be inconclusive. I am meeting with the Surgeon on Wednesday to discuss and plan for the surgery. thanks so very much for all the detailed information. So very helpful. Take care, Lori

Hi all, spoke to my Pulmomologist yesterday. He too was surprised that my biopsy was non-diagnostic. He said my options now would to either 1. Have a surgical biopsy whereas it would be definitive and if malignant, most likely stage 1 and I could get it all out. 2. He thinks now after viewing the radiology pics that he would be able to reach it with a Bronchoscopy. or 3. Wait and watch if there’s any growth with CT scans. He really doesn’t recommend that though because of my strongly positive circulating tumor cells. I am thinking I will do the Bronchoscopy. I really don’t want to go through a surgical procedure if this turns out to be a benign finding. I looked up the procedure on YouTube and noticed there was a medical center that did robotic bronchoscopes. Has anyone had that procedure? I do prefer to stay with my Dr. And he’s at a top NYC hospital, but this robotic one seems to be very precise. Guess I’m a bit wary after having a failed FNA biopsy. Thanks as always, Lori

Hi Justin, just checking in to see how things went with your doctor call yesterday. You had said you had a few problems, I’m hoping you’re doing ok. Lori

Hi Lou, thanks, yeah, pretty disappointing that they couldn’t get anything from 3 samples. Not what I expected. I talk to my Dr. early in the am tomorrow. Will soon see what’s next and share. thanks so much for checking in. best, Lori

Oh Justin, I’m sorry you’re having problems. I will be crossing fingers, toes, all of it, in hopes that you can get answers and help. Will be thinking of you with healing wishes! best of luck and take care, Lori

Thank you so much Justin!! Hope so too! And hope you’re in a good healthy place right now! my best to you too! Lori☺️x

Hi All, I haven’t spoken to my Pulmonologist yet, that will happen tomorrow morning. I did get results posted in MYChart and there’s NO diagnosis. 😐 frustrating to say the least. The short report says the samples were inadequate. Was hoping for definitive answers but still don’t have them. this is all I’ve got for now. (The blank ink is to leave out Dr. names. My best to all of you. Thanks again for your thoughts/support. Lori

Thanks so much Lou! You guys are truly awesome! Looking back at the report, I’m seeing that the nodule is actually 1.6cm diameter. I originally said 1.3. Not that I think that makes much difference. I know it’s still small enough that I can possibly have surgery to remove if need be. Happy to meet all of you who are so truly caring and helpful. Thanks again and will follow back up when I get results this coming week! all the best, Lori

Hi Tom, thanks so very much for your detailed response and wealth of information! greatly appreciated. I’m aware that my nodule is still small and the PET results were not worrisome. The PET was done in April ‘21, and then it was decided to just follow up with scans to keep an eye out for any changes. I didn’t want to have unnecessary surgery to remove the nodule if in fact it turned out to be benign, but in order to relieve any anxiety between scans, my Dr. ordered the blood test, expecting it would most likely turn up negative…but it didn’t. I will share the results when I receive them next week. I thank you and the others for your very helpful insights and responses and wish for all of you to stay on a healthy course! best, Lori

Thanks again Justin for the good wishes, after a year and a half of tests and waiting, I’m looking forward to knowing where I stand with all this. Again I appreciate it! LA x Judy M2, thank you as well for your sharing your diagnosis and how you came about it. I have been seeing a Pulmonologist from the start and doing a wait and watch on the nodule with my past few scans. in June I had the blood test. The Pulmonologist offered that as a less invasive way to determine if there were malignant cells. He specializes in Bronchoscopies but given the location of my nodule I was not a candidate for that procedure. He was surprised to find that my bloodwork was found to be “strongly positive” for Circulating Tumor/Protein cells, which led me to the CT guided Fine needle Biopsy yesterday. So I am waiting on those (tissue biopsy)results. Maybe I’m jumping the gun, but the radiologist that assisted the biopsy really has me believing this may be benign and scar tissue. But then my question would be why do I have a large amount of CTC’s? ugh, sorry if I sound confusing. I guess it’s because I AM confused. I should just be patient and wait for the pathology report. thanks again for your response and support. I hope all is going well with you! best, Lori Anna

Hi Justin, thank you so much for your welcome. I have been following the site and the journey you and others have been on. You have really been through it and are so helpful and supportive to others. You’re all so very strong and special. It’s really a beautiful thing to see. I appreciate your reaching out. Thanks again, 🙂 wishing you good health and a great weekend. LoriAnna