LouT

Julie, A singular situation for sure. The fact that they couldn't get tissue and the mass seems to be reducing at this time gives a level of credence to your doctors' opinion that this may not be cancer at all. I had failed biopsy attempts as well, and wound up getting surgery to confirmed once and for all if my growth was malignant or not. In my case it was and they removed it. I can understand that they may not want to put you through such an operation while the mass is shrinking though. It's not a terrible surgery but it is still challenging. Others may have different experience and opinions, but I would recommend sticking with the doctors' approach and pushing , when necessary, to get relief from any symptoms caused by the collapsed lung. Please keep us updated and let us know if you are getting relief from the discomfort this causes. If you do need to have thoracic surgery I have information to share to help you prepare for, go through, and recover from such surgery. At this point you are not diagnosed with Lung Cancer so let's hold off on that discussion. I have all digits crossed that you get through this with a clean bill, a disappearing mass, and no further treatment needed. Lou

Running Girl, So sorry to hear about the complications during your recovery. Most times the post-op symptoms are much less, but each case is individual. In my case it was about 5-6 weeks to recover enough to maintain my former workout routine (albeit with limitations that lessened over the following months. I'm glad to hear that you are on the mend and hope you were able to let your frustration with the first hospital known to them. We can be of help to the "next patient" to give feedback so medical institutions improve their work. Please keep us updated on your continued progress. Lou

Mat, Welcome and sorry you need to be here. You've come to a great place for support, knowledge and experience. I hope you'll hang around. I want to start by sharing two things with you: 1. A blog titled "10 Steps to Surviving Lung Cancer; From a Survivor" and it can be found here. It's a great primer and comes from a member who was diagnosed with Stage 3 then Stage 4 eighteen years ago. His story is inspiring, and you'll find many inspiring stories here from survivors a number of which we not given much hope but have lived years past diagnosis and continue doing so. 2. I have also had a lobectomy robotic VATS and prepared a checklist that will help you pre-surgery, in-hospital, and recovering. It is titled "Thoracic Surgery; Tips and Tricks". I believe there is information there that can help you, it's on this page. One final thing...please stay away from "Dr. Google". Much of the data there is dated and it does not look at individual aspects of your disease. I would personally trust my medical team and learn what is possible from the other super folks on this forum. Stay in touch, ask questions, and take the time to learn more about your disease at our "Lung Cancer 101". Lou

Welcome to our forums and we're glad you chose to post here. Grieving is not a simple process of "closure" or "accepting a passing", but a rather complex process that each of us goes through individually. Sure there are some similarities, but like so many things in life; we all travel that path individually. Feel free to post anything here including any questions you may have. Additionally, you may find our "GRIEF" forum of interest. Most of the folks there are going through similar situations as yourself. It can be found here, Lou

Sonny, Welcome to our forums. You're correct...there are no people I know of who would choose to be here. But, the good news is that this is a great place for you and your husband to get answers to questions, hear of other's experiences, and get support from people who understand the journey he is on. I too was diagnosed with NSCLC Squamous in April 2019. My treatment was purely surgical (stage 1a) and as of August 2022 I was still NED (No Evidence of Disease). There are folks here diagnosed with different cancer forms as well as stages at diagnosis. Please take a look below...get to learn all you can and always feel free to ask questions whenever you have them. ----------------------------------------------------------------------------------------------------------------- Share all that you get below with your husband. He'll find a group that understands what he is going through. Read a blog titles "10 Steps to Surviving Lung Cancer; From a Survivor" (click on the title). It was written by someone who was diagnosed at Stage 3, went to Stage 4 and today is considered cured 18 years after his diagnosis. We also have an area for caregivers called, "Caregiver's Resource Center", and you may find it helpful as you support your husband through this disease. Next is a great section of our Lungevity site titles "Lung Cancer 101" where there is a huge amount of information that can help you as you move forward from diagnosis to treatment, and then onward. Last note...DO NOT LOOK TO DR. GOOGLE FOR OUTCOMES!!! There are many reasons for this; the first being the the prognosis cited are five-year averages that don't include the latest treatments and available tools used in fighting the disease. Next, each patient is different, their reaction to treatment, the cause of their cancer, the stage at diagnosis, etc...so stick with your medical team and never be afraid to get a second opinion. We have super people here who were told to "get their things in order", and many years later they are still living full and happy lives. Learn all you can, get your husband involved here as well, and we look forward to helping you. Lou

I'm glad to hear that your father's treatment has started. Treatments can often be very tough on the patient and I've heard many folks here talk about adding a "Palliative Care Specialist" to the team. This person would monitor the treatment and help relieve side-effects that can often happen during the treatment course. Please speak to the lead physician about this. I've experienced a change in taste and it can be a terrible symptom to deal with. Please keep us updated. Lou

In 2010 I had surgery for colon cancer and for whatever reason during my hospital stay I "lost my sense of taste and smell". That's not to say I couldn't taste or smell anything, but all food tasted like metal coated in chemicals. All smells were the same, just stronger or weaker and the smell was horrible. The doctor told me he "never heard of it", but a smart nurse told me that she had the same thing happen as a result of the drugs she was given after similar surgery. The condition lasted around two more months (I realize yours has been longer as you are on the med continuously), but your symptoms sure sound like mine. My wife tried everything; my favorite ice cream (YUK!), a dish I loved (NOPE!), and anything to help me get food down. It just didn't work. I was put on acid inhibitors and over time (without any further treatment meds) the horrible taste began to fade and finally (about 3-4 months after the surgery) I was able to taste food again. The effects continued to improve slowly and finally I returned to "normal". Please speak to anyone on your medical team that will check into a way to reduce dose or look at other treatment options. Please don't accept anyone telling you that this doesn't happen. The FDA has an article containing data on "Taste Changes With Tagrisso". I hope you get some help and relief. Most people don't realize how terrible a side-effect this can be for a patient. Please follow up and update us here. Lou

Good Bro' How heartbreaking it must be for you to see your brother go through this. Is Palliative Care involved? They look to ensure patient comfort (to the best of their ability possible) while the treatment plan is applied. Please keep us updated and know that you, your brother, and family are in our thoughts and prayers. Lou

Ariharry, Sorry to hear about your grandfather's condition. Please take a look at our Caregiver Resource Center as there is information there that can help you in your role as someone looking out for a relative. Please let us know if there is some other information you may need. Lou

Javaroast, Welcome to our forum. There are different articles available regarding the side-effects of Keytruda and vision is mentioned in some of them. I have not had this type of therapy so I cannot speak to it from experience. Perhaps another member can but in the meantime I believe you should discuss this with your doctor to determine the severity of the side-effect and any actions that can be taken to reduce it. It is good news to hear that the therapy is reducing the tumor and I pray that continues for you. Please remember to come back here and tell us what your doctor determines and the outcome. Lou

Kristin, Welcome to our forums and I'm glad to hear that you have already looked around. This is a great place for you (and your husband) to come for support, hearing others experiences, as well as learning how to navigate this journey while avoiding the many pitfalls that can befall you. There are some things I would recommend to you: Share all that you get below with your husband. He'll find a group that understands what he is going through. Read a blog titles "10 Steps to Surviving Lung Cancer; From a Survivor" (click on the title). It was written by someone who was diagnosed at Stage 3, went to Stage 4 and today is considered cured 18 years after his diagnosis. We also have an area for caregivers called, "Caregiver's Resource Center", and you may find it helpful as you support your husband through this disease. Next is a great section of our Lungevity site titles "Lung Cancer 101" where there is a huge amount of information that can help you as you move forward from diagnosis to treatment, and then onward. Last note...DO NOT LOOK TO DR. GOOGLE FOR OUTCOMES!!! There are many reasons for this; the first being the the prognosis cited are five-year averages that don't include the latest treatments and available tools used in fighting the disease. Next, each patient is different, their reaction to treatment, the cause of their cancer, the stage at diagnosis, etc...so stick with your medical team and never be afraid to get a second opinion. We have super people here who were told to "get their things in order", and many years later they are still living full and happy lives. So, stay strong, learn all you can about the disease, treatment, outcomes, and keep connected with like-minded folks. Lou

Ale, Please make sure you share all symptoms with the doctor and ask any questions that may flood your mind later. Lou

Ale, Perhaps this article from Cleveland Clinic Journal of Medicine can help to put your mind at ease. Regardless of the area while contrast may improve some definition (such as border around a lesion), non-contrast would not totally miss a nodule or tumor unless it is so small regardless of having contrast or not. I hope this helps Cleveland Clinic Article. Please remember that even if a nodule is found that the majority of lung nodules are benign. Perhaps once you meet with your doctor you'll get more specific information that can help relieve your anxiety. Lou

Hi Ale, Sorry to hear that you are not feeling well. In order to help you out regarding how Lung Cancer is diagnosed you should read "Diagnosing Lung Cancer". It discusses the various tests needed to determine if someone has lung cancer or not. Meanwhile there were tests done in the USA to determine if contrast was significantly more accurate and non-contrast and the testing methodology and results can be found here. The conclusion they came to is that, except for vascular thrombosis, the results were almost the same. In your case they are finding nothing there (which is great news for you). I'm a three-year lung cancer survivor and my oncologist had my last CT Scan done without contrast and when I asked if it was as accurate he assured me that while contrast may add some small additional detail it was more than adequate for my purpose. You seem to have concerning symptoms and I would continue to follow up with your primary care doctor until you can get solid answers to account for your symptoms. Please update us here when you do that. Lou

You don't need to go through this alone...even with family we often need others of similar experience and some of that can be found here at Lungevity. Please take a look at some of our "Online Communities". There are virtual meetups, coaches, and of course our forums. Lou

Brian, You may also benefit from reading some of the information here on Lungevity. Click on Treatment Options. I hope this helps. Lou

Italia, Rikki is correct that we do not interpret scan summaries here, but even with your doctor on vacation there should be another associate covering for him. Please call the office as reading a scan summary can really be confusing and a scan can only show a mass or nodule. BTW, most nodules are benign and are usually watched to see if any activity (continued growth) warrants a biopsy or PET scan. For your own peace of mind please follow up with the doctor's office. Explain your situation and I believe you'll hear from the "covering doctor" regarding the test. Once you do that come back here and there are lots of folks that can answer questions regarding this journey from firsthand experience. Lou

My coaching is to stay with doctors you are comfortable with and confident in. Regarding your dad's pain. Please ensure that the lead doctor is aware of the issues and consider adding a "palliative care" professional to your medical team. They can monitor reactions to treatment side-effects and disease progress in order to counter and/or reduce them wherever possible. Many here have taken advantage of their services and had many good things to say. Lou

Lily I once tried Valerian and it did seem to help me relax to sleep as did a tea by Tulsi called "Sleep". But Pam is correct that you should check with your doctor before using anything as long as you are under chemo treatment. Lou

Teresa, Let me answer your questions: 1. How do I do it? Just give Kristi a call. She is a dear and loving person who will connect you with resources to help you on this journey. 2. Why? Because you deserve to be surrounded with support and caring and there are people here who will do that for you. Lou

JHP, I wish I could offer more experience on this topic, but I cannot. Lungevity does cover Radiotherapy under our Treatments section and it can be found here. It may not provide the detail you are looking for but can provide some additional information. Lou

T, Welcome to our forums. You're not alone anymore. We are a group of lung cancer survivors who can understand all that you are going through. Like you, I lost my mother to lung cancer and was diagnosed with NSCLC myself in 2019. I had surgery, (lobectomy), and have had clear scans since. Unlike you my mother had passed away years before my diagnosis. So, while my fear, disbelief, and loneliness were much like yours I didn't have both tragedies so close together. I can tell you that even after my initial scans I was still scared and worried each and everyday about a recurrence and I was losing the joy of living. With the support of the great folks on these forums I came to realize that, there are many survivors out there and while this is still a deadly disease it was no longer the automatic death sentence that it once was. I also realized that I could choose to live or that my survival could just be a depressing, lonely time. So many here cherished each day of survival that I chose to follow them and live, determined to use my life dedicated to others in service. I reconnected strongly with my children, dedicated a large amount of time to supporting others with this disease, joined and am a leader in an Alzheimer's Caregiver Support Group (my wife is a sufferer presently in hospice), and I sponsor others in Al Anon. So, three years after my diagnosis I am still here. My last scans (August of this year) were stable and NED (No Evidence of Disease) and I'm enjoying my life again. I share all this with you not to say that this is easy, but with the help of others we who have suffered this disease can come to terms with it so we can enjoy life. We learn to take care of ourselves (eating, exercising, etc.), connect with others (such as you are doing here), and not be afraid to reach out for help anywhere. For example, my primary care physician was/is well aware of my disease and the psychological challenges I went through, and she helped me with a short-term medication treatment as well as suggesting I speak to someone for additional insight. I did both and each step I took put my life into a better focus, restored my psychological well-being and sense of well-being. You deserve the same. Last point; I'm aware that LC is a disease of high recurrence and lethality, but right now I am healthy and living a life of purpose with an acceptance of whatever the future may bring, you can have that as well. Please feel free to ask any questions and also take a look at some of the other information we offer here at Lungevity. Please take a look at our Lungevity Support Services by clicking here. Stay with us, join in the conversations, and reach out for the help you deserve. Lou

The biopsy confirmation of NSCLC is an improvement of SCLC so that is one positive element of his condition. Others in our forum will be able to share any experience they have had with the technologies you are asking about so I'll keep my comments brief. An oncologist is a necessary person on your father's medical team. Please get one and review all the testing, options and places of treatment with them. Whenever possible a hospital with deeper experience in cancer, especially LC is preferred over the alternative. If you have any doubts at all and it is reasonable (travel time, etc.) then you can choose a facility that may better suit your father's condition and needs. Others may have deeper experience with the technologies (e.g., Gamma and Cyber Knife) and I'll follow this thread to learn along with you. Lou

SATo Welcome to our forums. You've come to a good place for support, knowledge and hope. One of the first things I'd like you to read (and share with your husband) is a blog titled "10 Steps to Surviving Lung Cancer; From a Survivor" and that can be found here. You'll learn much about how to handle the disease and some very important things for you to ask for (e.g., getting appropriate testing for possible targeted or immunotherapy). As the patients wife you may also have questions about taking care of him during treatment. I would recommend that you check out our caregivers support by clicking on "Caregivers Resource Center". And finally, you both need to better understand this disease, the testing, treatments, expected outcomes and much of that information can be found at our "Lung Cancer 101" section. Last point...please don't go and "google" for outcome, and prognosis as the data available it an average over time and does not often reflect the newest treatments and advances being made in the treatment of this tough disease. Ask any questions you have and know that there is a wide range of experience and knowledge here and our Lungevity Family will freely share what we have with you. Lou

Wow Claudia...what a blessing. Enjoy the good health and keep the winnings high and losses low in Vegas. Lou