LouT

Welcome to our forums Mscott and sorry you need to be here. I know you'll be hearing from others who have had similar experience and treatments soon, but I wanted to say "hi" and share some information with you. In my case my treatment was surgical without adjuvant chemo so I can't speak to the treatment from experience but here is some info that may help you on your journey: Learning and understanding this disease, diagnosis and treatments is an important element of survival. You can find our "Lung Cancer 101" here. Please read "10 Steps to Surviving Lung Cancer; From a Survivor" it was written by a member first diagnosed at Stage 3 then Stage 4 Lung Cancer over 18 years ago. We also have a forum for "US Veterans" where you can discuss issues specific to vets like yourself (and before I go on, Thank You for your service). There is a forum that covers "Chemotherapy" and that may also help you in better understanding those treatments. Please stick around, there is a lot of experience, knowledge, and support here. Lou

Julie, Please keep us updated your progress with the Tagrisso. Meanwhile you'll be in my thoughts and prayers. Lou

Elki, I'm sorry to hear your news. Hearing our diagnosis is always a terrible, and lonely set of emotions. My heart goes out to you. The call others have made for hope is a good one. Hope gives us a chance to live in the present with a better outlook for the future. Your nurse may have completed a form as part of a standard operating procedure. My wife recently passed away and she was on hospice for over 11 months. When she was put on she was given "24 hours to no more than a few days" but she went on for 11+ months. So, prognosis are often wrong and can be quite off base in their assumptions. So, hope is a good choice to follow here. If the day comes when you have to make tough decisions regarding your care, you will find strength you didn't know you had. I hope you have a strong support group around you. As a two-time cancer survivor I can tell you it makes a big difference. And of course, you have all of us here to listen and help in any way we can. Lou

Excellent news on the cancer front, now your medical team can address the sarcoidosis. We wish you all luck for your husband to have a swift and complete recovery. Lou

I'm sorry you need to be here, but glad you found our forums. The lung cancer diagnostic process can seem like it goes on forever, but it's necessary in order to not only determine if the issue is LC but also to determine the type and the best form of treatment. At this point your husband's doctors have not made a definitive diagnosis. Regardless of outcome you may get some benefit taking a look at "Navigating Your Diagnosis". It will help you to understand the processes you are experiencing and perhaps even help you to ask better questions of your husband's medical team. Please update us when you hear more. If your husband does need our support just know that we're here and ready to help. Lou

RJN has given you good advice. Of course lung cancer can occur along with chest pain, but often it doesn't. The only real tests for lung cancer are CT Scan, PET Scan, and (most importantly) a biopsy. If no growths are found in the scans then it is likely that your symptoms are caused by something other than lung cancer. If you'd like to learn more about the diagnostic process for lung cancer you can look here. Good luck with your testing. My advice is similar to RJN's; quit smoking, ask your doctor about your fears, get the necessary test to determine why you are suffering the symptoms you are. Lou

Wendy, These forums are to help support people with lung cancer. While I'm very empathetic to the terrible symptoms you're going through there isn't proof that you are suffering from cancer yet so I want to be very careful about any statements I make. Having said the aforementioned I can tell you that often the diagnostic process can be very taxing and lengthy. Please speak directly with your doctor to find out where you are in the process, what they are concluding, and when/if they plan on draining the effusion. Please come back here with your results and know that we wish you the best. My prayer is that you don't have lung cancer, but if you do we will be here to support you. Lou

Hi Ellen, Sorry you need to be here, but glad you found us. You're in a good place we have people with all stripes of LC (lung cancer) and who were diagnosed at all stages and many are still surviving and living their lives. First I'd like to share some items for you to begin to your important education as well as tips on how to survive with LC. The author of this article was diagnosed 19 years ago at Stage 3 and then it went to Stage 4 and he lives today and is one of our senior members. Please read "10 Tips to Surviving Lung Cancer; From a Survivor" Next, from our "Lung Cancer 101" section is something I wish I knew when I was going through my early part of the journey "What to Ask Your Doctor". So often, in the beginning, we are emotional we don't yet know enough to ask the questions that should be asked. This will help you out there. Finally, "Lung Cancer 101" this covers everything from testing, diagnosis, to treatments of all kinds and covers a number of situations that can arise. I realize I'm giving you a lot of information to look at, but in the case of LC "information is truly power" and we need all we can get. The last thing I'll leave you with is not to consult with "Dr Google" regarding prognosis and outcomes. Much of the data you'll find is averaged over a number of years and does not reflect all the latest treatments nor does it consider the individuality of your particular case of LC. Stay strong, know that you are not alone and ask any questions you have. You'll find that you've come to a wonderful community of people. Lou

This is useful, albeit only for folks in the UK. Would you mind if I moved it to our new forum "National Health System Treatment"? Since we have users from around the world we recently created a forum where they can share experiences and learning from their countries. I would like your post to be the first in the forum. Do you agree to my moving it there? Lou

Patti, So sorry to hear of your mother's situation. Whether nodules are in one or both lungs the only definitive test is a biopsy. Of course having had cancer already may indicate a higher probability of the nodules being malignant, but no guarantee. In reality, most nodules (~60%) are benign. But of course there is always the possibility of cancer. It must be very hard to know you mother is considering no treatment. But over the last few years I've come to believe that the end of every life does not need to end in battle with the disease if there is little chance of a reasonable quality of life. So, I understand her thinking. Please keep up updated and if you want to know more about the diagnostic process please take a look at "Navigating Your Diagnosis". I hope you find this helpful. Lou

Marianne, I believe you saw my response to Elebee and the references to the EGFR and other groups. Please follow those links there are people there that may be experiencing what you are. Also, feel free to ask any questions you have, there is a lot of experience here and we're willing to share and help. Lou

Mike, Sorry you need to be here but glad you found us. I'm sorry to hear about the mets on the adrenal glands. I have a friend who just had that situation and recently had surgery. She is doing well now and I hope you have a good outcome as well. Please keep us updated and ask any questions you may have. Lou

Hi Elebee, Welcome to our forums. Glad you found us but sorry you need to be hear. There is a lot to unpack in what you posted and while my own story did not include mutations, but there are many here who will share their stories and experience with you. We also have people who have been diagnosed at stages 3 and 4 who are still with us years later. In the meantime Id like to share a few things for you to read: The article "10 Steps to Surviving Lung Cancer; from a Survivor" is a great primer on survival. Written by one of our members first diagnosed at Stage 3, then Stage 4 and still here with us 19 years later. You may want to look at our forum on EGFR, there are others there that will be able to share experiences similar to what you have gone and will go through. There are some posts under "Chemotherapy" for Tagrisso and I did a search and came up with a few you may like to look at. They can be found here. We hope to see you often...ask any questions you may have, and you can even come here to vent...you will find understanding and support here. Lou

Johnny, I just finished responding to your first posting in "Introduce Yourself". There I asked for more details which you've provided here. The needle biopsy is the real indicator of whether or not you are dealing with cancer. The PET and MRI are to determine the extent of the cancer, (e.g., could there be brain mets). At this point you're still in the diagnostic stage (which we all find to be long), but once you have a treatment plan things will feel better. Telling your family is such a personal matter I hesitate to provide any counsel on it. For my part, I waited until I had a diagnosis and then shared it with my children (except one daughter), and family. My wife was already ill and not capable of understanding the situation. You know your family best and next week sure is close so you need to think about what you want the family to know. I will say it is good to have support at a time like this. In my case the daughter living close to me is the one who went through the diagnostic process with early on. Please keep us updated as you go through this process. There is a lot of information to share with you if you receive a final diagnosis of LC. Lou

Johnny, These forums can provide great knowledge and support from a great group of people. We offer our collective experiences and there is little we haven't experienced. Can you tell us more about your situation? While a CT Scan is a good tool in the diagnostic process biopsy is the real tool to know what you are dealing with. Please take a look at our section on "Navigating Your Diagnosis", it provides good information you can use during this part of your journey. We look forward to hearing more from you. Lou

Hi, I believe the mention of monoclonal antibodies is in reference to having Covid. I had to take them and it turned the Covid around for me. CEA stands for Cancerembryonic Antigen. It is a test to indicate the potential presence of cancer more information on that can be found here on the Cleveland Clinic site. CEA testing is usually done in addition to other types of testing, (i.e., CT Scan, Blood or Tissue Biopsy, etc.) And scan frequency is usually decided by the Oncologist and can be as frequent as every Three Months to every Six Months. As time goes by without recurrence the scans may move closer to being an annual occurrence. I hope this helps and please keep us updated as your mom progresses. Lou

Rebecca, Do you have a Palliative Care member on your team? Karen's suggestion is spot on. I've read instances here where they've been very helpful in reducing side effects and helping the patient prepare for the treatments proactively. Lou

Lonnie, Welcome to our community. Sorry you need to be here, but glad you found us. You are already receiving a lot of information so I'll just say "Hi" and we look forward to more updates from you as you progress through this journey. You'll find folks here with all types of diagnosis and treatments so there is a great wealth of practical knowledge to be shared with you. BTW, I live south of Charlotte. Are you going to Levine Cancer Center? Lou

Karen, That is great news and the Italy trip also sounds wonderful. Congratulations. Lou

PK2 You're already getting some good information. Let me share a couple more useful things for you to look at. "Thoracic Surgery Tips and Tricks": The information here will help you prepare for your surgery, get through the hospital stay, and speed up your recovery. It is on this page. "10 Steps to Surviving Lung Cancer; from a Survivor": Invaluable information for you to refer to as you embark on this journey. It can be found here. In addition to the blogs please don't go to "Dr. Google" to look for stats, prognosis, and longevity. Much of the data is a five-year average and doesn't reflect the most recent advances in treatments. Additionally, although we all have some similarities each case is unique to that person, their stage, present health, and other details. These things are not considered in the projected numbers online. Just know that Lung Cancer is not the automatic death sentence that it once was. I was diagnosed and had my surgery in May 2019 and as of my last annual scan (last August) I was NED (No Evidence of Disease). So, there is much to hope for and treatment improves at a constant pace. So, stay around, ask questions and get to know us. It is a great group of people here. Lou

J, Yes, there are other survivors with one lung here and I'm sure you'll be hearing from them soon. In the meantime there are three things I'd like to share with you. The first so you can educate yourself on this disease and the second to help you through your surgery. I'll also let you know that you SHOULD NOT go searching for prognosis and survival data on Dr. Google. The data there is based on five-year averages and do not consider new treatments and individual outcomes. Stick around, educate yourself, and know that we will be here to support you. "Lung Cancer 101" has volumes of information on this disease with everything from the causes, diagnosis, treatment, and survival. The best primer I've seen on this disease is a blog titled; "10 Steps to Surviving Lung Cancer; From a Survivor" (from a survivor with one lung) and it can be found here. Last is an article titled, "Tips and Trick for Thoracic Surgery". It has information to help you through pre-surgery, hospitalization, and post-surgery. Know that there is hope, there are many survivors here (I'm one) as a group we've been diagnosed at all stages, with all causes, and varied treatments, so we have a great amount of knowledge and experience to share with you. You're not alone in this. Lou

Hi Ginger, Like you my lung cancer was found through an incidental scan. Also, like you, I was diagnosed at Stage 1a and after my lobectomy I was ruled NED (No Evidence of Disease). That was 4 years ago and my next scan is in August. So, there is hope after LC and treatments are getting better all the time. Please stick around, ask questions, and let us know how you are doing as you continue to recover from this major event. Lou

D iane, It's good to hear from you again. You know you are always welcome here. I understand your pain. My wife passed away on April 20th from a long illness. She had been on hospice for 11 months and at the end I found some relief in her leaving the disease behind for something better. I hope your memories bring smiles and relieve some of the pain of loss. I don't know many people who were part of a successful couple that do like being alone, but I believe that our story is not done being written. There is always joy to be found be it with our family, friends, or even another person. I pray that you find all joy in whatever your future brings. Lou

Rebecca, You're getting excellent and caring advice above. I also want to point you to our forum on "Immunotherapy" where there are various thread on Keytruda along with other meds. Gain all the knowledge you can, ask any and all questions you may have, and then make your decision. I look forward to your future updates and pray for you at this difficult time. Lou

Rebecca This forum is to support lung cancer patients based on their experience, acquired knowledge, and the resources of LUNGevity. Please speak to your doctor regarding vitamin dosages and other related topics. Lou