Gina L Posted June 13, 2021 Share Posted June 13, 2021 Hi Everyone, I haven't been officially diagnosed yet, going for a CAT Scan on Wednesday for what is suspected to be lung cancer. I have been having shortness of breath for a few months but didn't think much of it until I was diagnosed with pneumonia in mid-April. Was put on 2 antibiotics and after 2 weeks of not getting better, the doctor put me on a medrol pack and an inhaler, really didn't feel much better after that too. A 2nd xray in mid May showed I still had an infiltrate and was told to wait 4 weeks and go for another xray. 3 hours after that xray, my doctor called me with the news. The mass got larger (now a mass not an infiltrate) and I have to go for a CAT Scan. I asked her what was the possible diagnosis, she said it looks like you have lung cancer. Shock. But I knew something wasn't right, the shortness of breath is worse, the exhaustion is crazy, and the pain in the back of my ribs can be excruciating at times. I was a smoker on/off for 20 years and quit 10 years ago. Neve had a lung issue in my life. Anyway, I am preparing myself and researched where I will go for treatment. And trying to stay calm and hopeful. Hugs, Gina Link to comment Share on other sites More sharing options...
LexieCat Posted June 13, 2021 Share Posted June 13, 2021 X-rays are lousy for imaging for something like lung cancer. It may show that there’s something there, but a CT will give a much better image, more accurate sizing. If you don’t have a pulmonologist, I’d connect with one pronto to interpret your CT scans and make any further referrals for testing, oncology, or surgery. Lung cancer ain’t what it used to be. We have people on this forum 15-20 years out from an advanced cancer diagnosis. But for the moment, you don’t need to assume you have cancer based on an X-ray. And even if it appears to be cancer, you will have lots of testing to determine the appropriate course of treatment. Keep us posted. Glad you found us. This is a great place for information and support. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 13, 2021 Share Posted June 13, 2021 Gina, Welcome here. Lexie is correct about the limitations of the x-ray to detect lung cancer. But even a CT scan cannot diagnose our disease (although the image is a lot more useful as an indicator). Here is some information about the diagnostic trail for our disease. I understand trying to remain calm and hopeful. Here, we've all experience that same state at this uncertain time. I can't help with calm but for hope I give you a synopsis of my condition. I was diagnosed with Stage IIIB non small cell lung cancer in February 2004. I've had every form of lung cancer treatment but immunotherapy (some more than once) and seventeen years later, I'm sill around and doing fine. So if I can live, so can you. There is a chance you don't have our disease. A tissue biopsy is needed to confirm a diagnosis. So stay connected while you navigate the diagnosis trail. We are a good resource to answer questions that you'll likely have by the basketful. Stay the course. Tom Link to comment Share on other sites More sharing options...
Gina L Posted June 13, 2021 Author Share Posted June 13, 2021 Thank you both for the information and support. I think the hardest part is the waiting for a diagnosis—whatever it is. 🙏🏻 Link to comment Share on other sites More sharing options...
LouT Posted June 14, 2021 Share Posted June 14, 2021 Hi Gina, You've already gotten some solid feedback, but I just wanted to welcome you to our forum and to reinforce what Tom said. Let us know what the final diagnosis and, if it is cancer, the proposed treatment plan. Also, let us know what questions you may have. As a group we have experienced most every situation you can think of so someone here will be able to share what they know from experience that may be helpful to you. Right now though, please try to keep yourself together. The diagnosis phase is a very difficult one for us all and I can tell you that if you are diagnosed with LC that you will feel better once your medical team puts together a treatment plan for you. Anyway, in the meantime as any question you may have here. Lou Link to comment Share on other sites More sharing options...
Gina L Posted June 14, 2021 Author Share Posted June 14, 2021 Thank you Lou! I am a big supporter of support groups and will be keeping in touch. Link to comment Share on other sites More sharing options...
TJM Posted June 15, 2021 Share Posted June 15, 2021 Gina Your learning one of the worst part of LC. The waiting. We all get it. But the wait will be worth it. Welcome and wishing you well. Peace Tom Link to comment Share on other sites More sharing options...
Gina L Posted June 15, 2021 Author Share Posted June 15, 2021 Very true! The hurry and wait is the worst part. I made an appointment at Sloan Kettering for Friday, they will review my scan and x-rays and will do whatever is needed from there. I know something isn't right, cancer or not, so I wanted to be proactive and just go to one of the best in my area. Will keep everyone posted. Gina Link to comment Share on other sites More sharing options...
Gina L Posted June 19, 2021 Author Share Posted June 19, 2021 UPDATE CT SCAN RESULTS BACK I have a mass between my lungs (mediastinal), pressing on my heart and esophagus with enlarged lymph nodes and an atelectasis where my pneumonia was. No pulmonary nodules. My appointment to Sloan was changed to next Friday, instead of yesterday because CT Scan report was not ready in time. Link to comment Share on other sites More sharing options...
Tom Galli Posted June 19, 2021 Share Posted June 19, 2021 Gina, Hang in there! Your next step is likely a biopsy to identify type of cancer, if indeed the mass is cancer. This provides information on biopsies and how they are acquired and analyzed. When you learn which type your physician plans to use, let us know and those of us with experience will chime in and tell you of our experience. Waiting is always something we all dislike with a passion. Unfortunately, coping with waiting is something we've all become accustomed to. We don't like it and sometimes complaining about it is therapeutic. If that be your case, fire away. Stay the course. Tom Link to comment Share on other sites More sharing options...
TJM Posted June 19, 2021 Share Posted June 19, 2021 Welcome to our club (yes I'm skipping ahead). So much depends on the details now. Please keep us informed as you progress thru the process. LC use to be a fatal diagnosis. Not true anymore. You got this Peace Tom Link to comment Share on other sites More sharing options...
Gina L Posted July 5, 2021 Author Share Posted July 5, 2021 Had a MRI with/without Contrast & a PET SCAN both confirmed the mass in the mediastinal area with lymph node involvement, all very suspicious of a malignancy. No pulmonary nodules. Went for my biopsy on Thursday so I should know next week. It looks like Thymic Cancer and will be treated with surgery, chemo, and radiation once they know the type and staging. I will probably lose a part of my right lung. Luckily it is abutting the heart and not attached to it. Not as many support groups for Thymic Cancer (1 in 500 people are diagnosed) but I found a Facebook group. Thank you for being here and being so supportive. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 5, 2021 Share Posted July 5, 2021 Gina, Welcome here. When will the biopsy results be in. Did the PET scan indicate standard uptake values (SUV) suggestive of metastatic activity in mediastinal lymph nodes, lung and other areas outside of the thymus gland? What were those values? I know very little about thyme cancer except the thymus is a small organ in the upper chest that makes white blood cells (lymphocytes). I do have an autoimmune disorder called Sjogren Syndrome, and this was diagnosed well after my lung cancer treatment ended. My oncologist ran tests to check for thymus involvement and thankfully, mine wasn't. I wish I had more insight or information about thymic cancer. Of course, you are welcome to hang around. Some of our treatments, especially surgery and radiation, may be very similar to those used in thymic cancer. Stay the course. Tom Link to comment Share on other sites More sharing options...
Gina L Posted July 5, 2021 Author Share Posted July 5, 2021 I attached the PET scan results. As I am new and learning the lingo I am not sure of the answers. I should have biopsy results around Wednesday or Thursday PDF document.pdf Link to comment Share on other sites More sharing options...
Tom Galli Posted July 6, 2021 Share Posted July 6, 2021 Gina, Your PET results confirm a mediastinal right lung mass with dimensions of 7 cm x 5.5 cm as metastatic with an SUV of 10.8. There is reported a further metastatic lymph node measuring 1.3 cm x 1.2 cm with an SUV of 8.9. So, these areas are behaving as if they are cancer. Here is my guide to understanding PET scans and SUV. Next up is the pathology (histology) report of your biopsy. Let us know the type of cancer reported in the biopsy. If it is lung cancer, you would likely stage at IIIB. Here is information about staging. I was diagnosed at stage IIIB in February 2004 and I'm still here. If I can live, so can you! Stay the course. Tom Link to comment Share on other sites More sharing options...
Gina L Posted July 13, 2021 Author Share Posted July 13, 2021 I got my diagnosis. Primary mediastinal large B-cell lymphoma, Non-Hodgkins. I see my lymphoma oncologist on Friday for more info. From my understanding I will get a bone marrow biopsy done too and will be treated with Chemo and radiation. I want to thank everyone for your support during this crazy month of getting diagnosed. I am not looking forward to the treatments but I am looking forward to my future! Much love, Gina Link to comment Share on other sites More sharing options...
LexieCat Posted July 13, 2021 Share Posted July 13, 2021 Hi, Gina, I know very little about non-Hodgkins lymphoma, but I'm glad to hear you've finally gotten a proper diagnosis. That is a HUGE step toward getting the right treatment and getting your life back. Best of luck--you have the right attitude to put yourself in the best possible position to approach treatment and recovery! Link to comment Share on other sites More sharing options...
Gina L Posted July 15, 2021 Author Share Posted July 15, 2021 Thank you LexieCat! It certainly has been a roller coaster ride to the diagnosis---Lung Cancer, then Thymoma, and then Lymphoma but I am grateful I am on a path...tomorrow I meet with the Lymphoma specialist and hope to have a plan of action. Link to comment Share on other sites More sharing options...
Dona Posted July 19, 2021 Share Posted July 19, 2021 Gina I am so new to this forum and while perusing topics I stumbled on yours from earlier this month. Your story sounds like mine, especially the waiting for answers. Please know this.group is magic when it comes to extensive knowledge, suggestions and HOPE. Pls keep us posted on your journey. Link to comment Share on other sites More sharing options...
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