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LouT

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Everything posted by LouT

  1. Google has its place, but not so much in regard to lung cancer information. Much of the information you'll find are stats that are averages over a period of 5-years. They don't accurately represent the newest and innovative treatments that are being applied today. There is so much information here at Lungevity and among the survivors of this forum that hopefully you can find some solace and hope. That is not to downplay the seriousness of this disease it is the deadliest of all cancers and highly recurrent. But knowledge is power that help you to support your dad as he goes through the treatment and recovery journey. Please take some time to read though information found in our "Lung Cancer 101" that can be found here. Lou
  2. Brenda, Can you share a bit about yourself. This is a great place for support if that is what you need and came here for. Lou
  3. LouT

    Hospice For Sale

    Tom, Discouraging to read this. As someone whose wife is presently in hospice it can give you chills. In my case the care has been wonderful and the company checked out well before they were brought in (recommended by other Alzheimer's Caregivers). The care has been excellent and support to the family the same. I'm lucky, but I can only imagine what some families must go through with these "sham companies". This can be the hardest period of a family's life and to learn that so many scammers and charlatans are taking advantage of it is really disheartening and it pisses me off. Thanks for sharing. Lou
  4. Kamoto, You're hanging in there and you must keep your eyes on the goal. As you so aptly said, "years of health"...I would add years of life with your loved ones, friends, sunrises, and all the things you find beautiful about living. Lou
  5. Christine, You not only can post here, but we are glad you found us. Our forums offer a lot of great information and our Lungevity Family offers great support based on the personal experience of many survivors (like yourself). Feel free to ask any questions you may have and even though you had your initial diagnosis and treatment (surgical in this case) you should take a look at a blog titled, "10 Steps to Surviving Lung Cancer; From a Survivor". It can be found here. So glad to hear that your recovery is going well and that is something to celebrate. I've also had periods where I felt "guilt" over my case when compared to others and while that is an understandable emotion it is misplaced. Life deals what it may to us and just as we shouldn't compare our lot to someone having (at least to the casual observer) an easier time of it than us we should also not do the inverse. Celebrate your victories and good news. Enjoy them and get back to enjoying the life that you once feared would be short. I hope to hear more from you as time goes on (scan updates, etc.). As long as you're here you will not be alone. Lou
  6. Minh, Keep on pushing yourself. You're making great strides with good results. It's great to hear this. Lou
  7. LouT

    It’s Cancer…

    Carrie, Sorry you need to be here, but glad you found us. I can understand how you must feel right now. A lung cancer diagnosis is tough, but there is hope as it is no longer the automatic death sentence it once was. You'll find many survivors here that will share their experience and knowledge with you. You ask a great question ("What happens next") and there is some good information you should read regarding "Navigating Your Diagnosis", it has many articles that will inform and advise. It can be found here. I also want to share a great and important blog titled "10 Steps to Surviving Lung Cancer; From a Survivor" that can be found on this page. In the meantime please post any specific questions and take time now to learn all you can about this disease. We're here to support you so keep on posting. Lou
  8. Yu-Tai, Welcome to our forums. Sorry you need to be here though. You don't mention if the tumor has metastasized beyond the lung, but I am making the assumption that you've had a full tissue or blood biopsy to confirm the malignancy. I sure understand how upsetting a diagnosis like this can be as I went through it myself (as have many others here). You really would do well to learn all that you can and there is some very good information from NIH regarding EGFR and it can be found here. Additionally we have some forums that focus on mutations including EGFR and they can be found on this page. Another important blog is titled "10 Steps to Surviving Lung Cancer; from a Survivor"...you can find that at this location. Please update us with as much information as you can so our folks can offer knowledge from their experiences with you. Also feel free to ask any questions you may have. Lou
  9. Richie, Welcome to our forums. SCLC is a tough one to fight, but there are more treatment options today than at any time in history. I want to share a couple of areas you should read up on (knowledge is true power with this disease). This article is titled "10 Steps to Surviving Lung Cancer; from a Survivor" and it is my "go to article" for newcomers. It was written by a member who was Stage III and Stage IV over 18 years ago. It can be found here. Next is a forum on SCLC where you can be in contact with people on the same journey as you. Always feel free to ask any questions here, but you may find some help information at this forum. You can see it on this page. So many of us have shared here the shock, disbelief and dread we felt at our diagnosis. Stay connected to your friends and family for support. You can also come here with any questions and our Lungevity Family will share their experiences and knowledge with you. Many of us find that once we start treatment our anxiety levels go down as we are now focused on our treatment and defeating this disease. Know that LC (lung cancer) is no longer the automatic death sentence it was years ago. Advances in treatments are occurring every day and there is hope for us. On the other hand, if you find yourself sinking to deeply into depression and/or anxiety please speak to a professional. In that case, some treatment now can put you in a better frame of mind to engage in the treatment plan and enjoy the life that you are fighting for. Lou
  10. What terrible news to receive. I'm sorry for you and your mom. I won't speak to any part of your mom's disease as only a doctor, after considerable testing, can say what stage she is at and what the prognosis would be with treatment. But as a caregiver (and the oldest sibling) I want to share some information for you as I understand how hard it can be living the life of a caregiver. We have a Forum titled "Caregiver Resource Center" and it can be found here. Once you have more definitive information on your mother's disease please post it here along with any questions you may have. Our family here has many survivors with varied diagnosis, treatments and knowledge that they are happy to share. Your mom and family are in my prayers. Lou
  11. Judy, A wonderful story with an excellent outcome; CONGRATULATIONS!!! NED is great and I hope you carry that monicker for a long time. Lou
  12. DRock, Karen's advice was spot on. Never keep any symptoms (regardless of severity) a secret from your medical team. Lou
  13. Thanks for the info Judy. My LC was squamous so I'm particularly interested. Lou
  14. DRock, Of course the nodules are first formed, often from an infection or as a result of an irritant to the lungs. Cleveland Clinic has some very good information on lung nodules and you can find it here. While I've read that lung nodules are benign 60% of the time this article claims such at 90%. Regardless, although a nodule can "magically" appear and disappear benign ones rarely continue to grow once formed. In my case a needle CT Guided Needle Biopsy wasn't possible so I had to have surgery. Prior to the surgery I asked my surgeon what the chances were that my nodule was benign and he replied that it was only 10%. He based his opinion on the fact that over a 3-month period my nodule had grown from 6mm x 11mm to 13mm x 18mm. I hope this helps. Lou
  15. LJH, Welcome to our forums. Sorry you need to be here, but glad you found us. Like you my tumor was discovered during a scan for a different reason. Not all nodules are malignant, but based on what you're saying and what the doctors have discussed it may well be in need of removal. You didn't say anything about any mets outside the lung and that will prove to be a good thing going forward. But let me get something off the table for you; you don't need to be a smoker to get lung cancer, you just need a set of lungs. You'll hear from other non-smokers in the near future on that topic. Waiting a bit to improve biopsy opportunity is not unusual and, like you, I had to wait three months between the initial sighting to the second set of tests that ultimately led to an inconclusive PET Scan and failed CT Scan. Finally a surgeon had to go in, perform a wedge biopsy. At that point they tested the tissue and found it to be malignant so they did a right-lower lobectomy. That was back in 2019 and as of my most recent scans I'm NED (no evidence of disease). That is to say that with today's treatments lung cancer is no longer the automatic death sentence that it once was. So, there is more hope now for those of us diagnosed with this disease than ever before. You ask why they are waiting for a second set of scans... The answer is that most nodules are benign (~60%) so they will do what they can to confirm as best they can that further intervention is necessary. Also, there are many situations here where folks were misdiagnosed before a LC diagnosis was made. You are still in the diagnostic process so I'll share some good information from our Lung Cancer 101 forums titled "Diagnosing Lung Cancer". It can be found here. While they are doing tests please ensure you request that they include biomarkers as that information can be very useful later on. In addition there is a great piece titled "10 Steps to Surviving Lung Cancer; from a Survivor and it can be found on this page. This blog offers a lot of useful information and advice as you go through the process. Please ask any questions you want and let us know how your continued testing goes. You'll find a large group of folks here who can share their experiences and learnings with you and it's also a great place for support. Lou
  16. GeoffR, Welcome to our forums. You'll find a lot of useful/important information here as well as many survivors that will share their experiences and learnings with you. Growth in nodules are an important point of consideration when diagnosing lung cancer, so is a PET Scan. But the key determinant is always the biopsy and that is where you'll learn for sure if these nodules have become malignant or not. At this point you are still not diagnosed with cancer, so I'll hold off sharing information that concludes that you are. Instead I'll share information you should know during the diagnostic phase of this journey. It is called "Diagnosing Lung Cancer" and can be found in the Lung Cancer 101 section of our webpage and you can find it here. In the meantime feel free to peruse our forums and you'll see a number of survivor stories that can attest to the fact that today Lung Cancer is not the automatic death sentence that it once was. The initial response all of us has had was one of shock, disbelief and panic. You're not alone with those feelings, but, if your biopsy does show malignancy, there is more hope than you would have thought possible. Lung cancer treatments have come further in the last 5-10 years than in the previous 50. So, consider the hope when you read the stories of others and do all you can to take care of yourself; physically, emotionally, and spiritually. These things will be a clear advantage to you wherever this journey leads. Fingers crossed for your biopsy to go well. Lou
  17. DRock, Sorry you need to be here, but glad you found us. I'll try to handle your questions best as I can. 1. I've never heard that the location of lung nodules was a predictor for malignancy or being benign. Most lung nodules (~60%) are benign and require watching over time. 2. My nodule was 11x13mm and it was not considered large, but enough to be a problem. Smaller nodules can often be difficult to get a tissue biopsy from and that can slow down the diagnostic process. The more important trait is if the module is stable or growing. Benign nodules rarely grow although they can sometimes appear and even disappear over time. 3. We have a section in our Lung Cancer 101 series called "Diagnosing Lung Cancer" that will provide you with helpful information as you go through the diagnostic process. Take a look at this page. 4. The first thing I want to do for you is share a blog that will be helpful; "10 Steps to Surviving Lung Cancer; by a Survivor" it will provide a lot of good advice for you and it can be found here. This will be quite helpful if you are in fact diagnosed with Lung Cancer. You seem to have a positive attitude and that will serve you well regardless of the outcome of your testing. The good news I can share is that Lung Cancer is no longer the automatic death sentence it once was. I was diagnosed in 2019, had surgery (lower-right lobectomy), and have been NED (No Evidence of Disease) ever since. You'll find many survivors here and as you go through your journey we'll be here to support and help you. Lou
  18. StrongMama, Welcome to our forums. There is a lot of information to be found as well as a number of our family that will share experiences with you. My lung cancer was treated surgically so I have not firsthand experience with any chemo or immunotherapy. But if you could tell us what your biomarkers showed folks will be able to better match their experience to your situation and offer counsel. In addition we have a number of forums focused on various mutations and they can be found here. I look forward to hearing more about your journey and any updates you have. Again, welcome. Lou
  19. Bridget, I'm glad that you dodged the bullet on this and sorry to hear that your wife has not followed up on the X-ray. I hope that she does soon. All data points to early detection being a positive in treatment and outcome. I pray that she goes back soon. Lou
  20. Lahalsa, Welcome to the club nobody wants to be a part of. The first thing I can tell you is that lung cancer is not the automatic death sentence it once was. So please take everything one step at a time. Our forum is filled with survivors some were diagnosed many years ago. You'll soon be hearing from others who were also diagnosed at Stage 3 and 4 and you should ask any and all questions you have on your mind. Nothing is ridiculous or off-limits. Next I'd like you to take a read on a blog titled "10 Steps to Surviving Lung Cancer; from a Survivor". It can be found here. BTW, the writer is still here 18 years after a Stage 3 & 4 diagnosis. Keep posting and coming back. You're not alone now. Lou
  21. Hi Bopsie, I don't think you are being overly dramatic. Perhaps you can request that she get a low-dose CT Scan along with whatever other treatment she receives. Please remember that this will likely turn out to be something other than cancer, but lung cancer has often been misdiagnosed as pneumonia or some other chest infection. A scan can provide good information that should put your mind at ease. Lou
  22. Shecares, Welcome to our forums. I'm glad you found us and sorry you need to be here. You don't mention if your follow up scans were clear or if any problems were found. I also don't know what other study you are part of the the treatments involved. You did mention breathlessness and that can surely be a part of having had lung cancer, but it would help to know if it was recent or when it became a symptom. Also, did you see a doctor for the vomiting and breathlessness? Please provide more information as that will help us to provide more of a response to you regarding the problems you are having. Lou
  23. LouT

    LUNG BULLAE (Bulla)

    Hi Dona, I'm glad you posted. While I have not been diagnosed with Bullae, it does not seem that it is a condition only unrelated to the lungs, but rather a result of changes in the lung tissue caused by emphysema. You can read some information here from our own National Institute of Health. The article can be found hehttps://www.ncbi.nlm.nih.gov/books/NBK537243/re. I hope this helps. Lou
  24. Joana, Sorry to hear your history and these new developments. I agree with Lily's doctor that the CT Scan should produce more results than the PET. Of course they can be used together, but for the most definitive test I believe the CT would be the one. I can't answer your question about fighting your insurance company so I'll leave that to those who have actually done that. I hope your symptoms are just part of your recovery from Covid. Lou
  25. Julie, I'm glad the surgery went well. If I knew you were getting the surgery I would have shared some tips and tricks on getting through it well. But instead I'l share something more general, but equally important. It was written by one of our members who was diagnosed with Stage 3 & 4 lung cancer 18 years ago and is still very much with us. It is titled "10 Steps to Surviving Lung Cancer; from a Survivor" and it can be found here. Please keep us updated and let us know if you have any questions. Lou
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