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  3. Thanks for your feedback on the solids and ground glass. I really appreciate your knowledge and you've (unfortunately) had so much experience. I think it is the smaller of the solids they are most concerned about - it changed quite a bit from 2016 to 2023 though is stable now. I guess I don't understand/know what you mean by solids being more dangerous even while the ground glass is more likely to be malignant. I really asking more about the former ( solids being more dangerous). Fortunately all of my nodules are small though there are like 7. Interesting on the multifocal and cure.... I've found a couple good articles.... Oh, I didn't realize you leaving Inspire was about the AI. I read those posts as several of you were going back and forth. I think I only commented on that post once other than after you left - then there was stirring about where you were/what happened, etc. I didn't realize that was the post that upset you - thought it was a different post though really didn't know. Well, I'm glad you landed here. Important you have a place to be AND others really benefit from your knowledge and experience! I'll likely stay here - as I said I'm still listed as active on Inspire though haven't been on there for a bit. When I'm posting a link to a very active and helpful disease community Inspire does NOT have (and a disease someone is struggling with) I should not be censored. I was shocked to be honest..... As I said I posted that link many times before on two other Inspire communities and no-one deleted anything until I posted it in the lung cancer community for a newbie with Sjogren's struggling with lung cancer treatment causing more severe dryness. It was a real ethical dilemma for me... I'm a rule follower though I'm on these sites to be of help and support to others once I learn a thing or two : ) so to not share a very helpful reputable site when I know it exists blew me away. I don't have much knowledge about lung cancer though I do in the other communities I was on there... and was often the first, sometimes the only, and often one of just three who responded to a newbie - I find this very sad though can't support that way of operating - it's not really about helping others then which is what I told the Mods... at least not as THE priority which is why I make such responses. Well, anyways, I'm glad I found this site. I'm such a fan of these health sites and wasn't sure if there was another quite active community for lung cancer out there. I'll have to spend some time learning my around the various posts, etc. I think there's more than what I realized here regarding posts.... I'll check out those areas Lou mentioned too. Thanks again, edive! Livin
  4. edivebuddy

    Lung Nodule

    @NYC GUY I personally would get a vats fine needle biopsy with a rapid in site evaluation ROSE. That way a positive finding gets you a resection right then and there. An early resection is your best chance for a cure. Good luck to you and sorry you're even faced with this decision.
  5. Yesterday
  6. I personally would feel comfortable waiting. Strange about your pulmonologist. You like a lifetime income stream 😁 ground glass is more likely to be malignant than a solid module. But a malignant solid module is way more dangerous. In my opinion multivocal has a very good chance of being the first lung cancer with a cure. A was having a problem with inspires AI pretending to have feelings. When it says it understood I lost it considering the site says peer support from People like me. Then the mod deleted a post and called me not supportive or nice. That was definitely the straw. They can keep their bot and definition of supportive. I will not aid in their success at the cost of my own mental health. Stress is bad. No point subjecting myself to more of it.
  7. Thanks, edive! I was on Inspire.... still active though haven't been on in some time. I heard you were either here or another site now and hoped to "bump into" you : ) Yes, VanCoerte and I exchanged a few posts not long after I posted there for the first time. I too wonder about multifocal. I could have had biopsy after last scan. One of my solid nodules is 11x8 mm. A ground glass is 9x6 mm. The one that turned solid was 8 mm in Sept 2023 and then 7 mm in Dec 2023 though such a small difference it could have actually not changed at all. The others are around 6 mm with one being 4 mm. Sadly I heard nothing from my pulm who ordered these CT's. I was to have a tele a couple weeks after the CT though they canceled and rescheduled for a few weeks after that which did not work for me.... etc. etc. So when I saw my onc (for other reasons -more a rheumatic hematology issue at this point) late January I asked her about scans. I had sent her the reports. She let me know she believes likely a slow growing cancer. I trust that even while I know a biopsy is the only way to really know. That evening I then heard from pulm via the portal - over a month after my scan. I think onc may have reached out to her. Given all was stable she was ok with me waiting until July for rescan which is what I wanted. It's 4 hours away and I just made 4 trips there in 4 months and did not want to drive again - I have other health issues and still work half time so..... Given all I've read I feel pretty ok with waiting until July for rescan. Need to get things in financial order too b/c I suspect they may want to do a resection as the biopsy which I've seen can result in a bigger surgery- thinking recovery time. Where the solids are (two different lobes - both right lung) there is also ground glass in both of the lobes.... It's just me so I don't have anyone else to rely on so just in case.... I need to have my ducks in a row. I don't worry a lot b/c I plan for what I can (then still worry some LOL). Thanks again for your reply!
  8. Sounds like multi focal lung cancer. Very slow growing. Are you on inspire? VanCoerte there has been dealing with this for a couple decades. Like 4 wedge resections and 1 SBRT treatment over the years. It's nearly impossible to biopsy a tumor with less than an 8 mm solid component. They used to wait till it was 10 mm but many will try a biopsy now at 8. There is of course a surgical biopsy but that's pretty extreme.
  9. Karen_L

    Lung Nodule

    @NYC GUY, you may want to re-post this as its own topic-- it will likely generate more responses. I'm always envious of people who have the option for surgery. With surgery, you get rid of the nasty thing and you get a biopsy. My tumor and lymph node locations sent me down the road of chemo and radiation, and now, a targeted therapy. If you are concerned, it's best to find a second opinion, ideally, from a major cancer center. You're lucky to be near several with the federal NCI designation. You can learn more about why the NCI designation can be helpful here. Please consider re-posting this in order to get more feedback. And, keep us posted.
  10. Karen_L

    lung nodule

    Hi Bob, and welcome. The waiting is just awful. It made my head spin. Hang in and keep us posted.
  11. Bob G

    lung nodule

    Thank you Lou, I will remember that. I go for another CT Monday so we shall see.
  12. Thanks so much for sharing some of your story and for the welcome, Lou! Yes, to cancer all over the family. I didn't mention my mom died (at 85) in 2011 of a primary brain tumor and my brother died of kidney cancer at age 53 in 2005. My mom lived a week after diagnosis and my brother 3 or 4 months. I actually have one sister left who is 70. I am almost 62. Yes to various cancers in the extended family too. Thanks for the resources. I have been doing a lot of reading the last handful of months though due to other health issues I generally stick to medical articles, etc. I have seen the timelines for life expectancy are way off so thank you for that reminder. Because I am likely to have adenocarcinoma if diagnosed I am not too worried b/c of all I've read, including from survivors on some other sites. I think back to my dad who was diagnosed in 1975 when there were few treatments. They said he likely had lung cancer five years before diagnosed. With surgery and Cobalt treatments back then he lived 2 years. Blows my mind when I think about that so when I see all that is available today and how so many are doing I don't question that. Though... I do see some who do not fare well or for long.... I will check out the Lung Cancer 101 and blog before long. Haven't been awake long and have to get ready for work here soon : ) Thanks again, Lou!
  13. Welcome to our forums. I'm sorry you need to be here but glad you found us. We're a community made up of LC (Lung Cancer) survivors and some caregivers. The stages, types, and treatments we've experienced are "all over the map" so you'll be able to ask most any question and find people with firsthand experience. Like you most everyone in my family died of cancer. My dad, mom, most of my uncles and aunts on my mother's side, and a step-sister, so like you I understand the situations reasonably well.. What I can tell you is that when my mom died from LC we didn't have many of the treatments and trials available today. So you have the experiential knowledge but I think it's also good to learn all you can in an updated manner so I'm going to share some different information with you. We have a section called "Lung Cancer 101". It covers causes, diagnosis, treatments and all aspects of Lung Cancer it can be found here. An important blog written by one of our senior member is titled "10 Steps to Surviving Lung Cancer; from a Survivor" it is on this page. This member was originally diagnosed at Stage 3 then Stage 4 and after 20 years of treatment has been declared "cured". A tip for you; stay away from Dr. Google. Outcome statistics found there are normally over a 5-year period and don't accurately reflect new treatments available. Neither do they consider the individuality of our situations. You're always better sticking with your treatment team for that information. Please stick around, update us as events unfold and ask any questions you may have. We'll be here to support you. Lou
  14. Last week
  15. Just want to introduce myself. I'm still in differential for lung cancer diagnosis or whatever else this might be though told by local onc I likely have a slow growing lung cancer (assuming adenocarcinoma). I have changes on HRCT scans from 2015 and 2016 (done for other lung issues) compared to low dose CT Sept and Dec 2023. Pulm is from a large academic medical institution with NCI; local onc is from a small collaborative cancer center though not NCI. If diagnosed I'll have the large academic NCI take the lead - they're 4 hours away. No biopsy yet - I opted for rescan in early July 2024. Sept to Dec 2023 scans were fairly stable with multiple ground glass in all lobes with one solid and one that turn solid over these years. I'm no stranger to lung cancer. Lost my dad when he was 56 to lung cancer (likely adenocarcinoma); I was 13. Lost my older sister to lung cancer (she was 48) in 2004 (assuming small cell - she was gone in three months) and my younger sister to lung cancer in 2019. My younger sister had a rare neuroendocrine small cell lung cancer. Anyways, I'm just trying to learn more - I'm a big fan of health forums. I have many health issues, mostly due to autoimmune issues so frequent some health forums.
  16. LouT

    lung nodule

    Bob, Sorry to hear about the recurrence but glad you found us. Nodules that grow are definitely worth getting a biopsy and I understand that they want more mass so they can do a better job of getting the sample they need to test properly. The waiting is terrible and I remember feeling great anxiety during my initial diagnosis and especially when I was told to "wait 3 months" before the next scan. Needless to say I was not a happy camper. I'm so glad that you gave up the smoking. Regardless of the COPD I'm sure that your breathing is most likely better now than when you were active in the habit. That will be a help through this. Please keep us updated and feel free to ask any questions you want. We have a pretty large base of survivors on this site with a great variety of diagnosis and treatments so there is a lot of experience to share. You won't need to go through this alone. Lou
  17. Our Caregiver Connection virtual meetup is tomorrow! If you have a friend or family member living with lung cancer, connect with other caregivers to get tips, share stories, and get support. This virtual meetup gives everyone a chance to talk and listen during a moderated Zoom with others going through a similar experience. Register: https://us06web.zoom.us/meeting/register/tZIodumpqDIoGdCqQYdf0poqUYCX791azl54#/registration
  18. Advocacy Opportunity: Share your experiences with lung cancer by completing this survey – responses will help CISCRP (an independent non-profit organization) better understand meaningful aspects of health for lung cancer patients. If you complete the survey, you can enter a raffle for a chance to win a $50 Amazon gift card. Complete the survey here: https://survey.alchemer.com/s3/7772279/Lung-Cancer-Survey-Part-II-Lungevity
  19. Dina, I'm so glad to hear that your surgery went well and that your recovery is going well. The spasms and pains are truly a pain in the butt. Some of that really has to do with muscles and nerves healing after the surgery. You may even have some ongoing nerve pain (itching and burning) at the sites of incisions. For those I recommend asking your doctor for Gabapentin. On the other side the more you can use the spirometer that more you do it the more benefits you'll see. Doing the exercises multiple times a day will help; clear your lungs for better breathing, strengthen your muscles to reduce spasms and increase blood flow for healing. Also move as much as you can comfortably do. I found that the more I moved (uncomfortable as it was) the better I felt. Try to keep your pain levels down as well. When you have less pain you're more apt to move and regain strength and flexibility. Please continue to keep us updated and I'm very happy you are doing well. Lou
  20. Hey everyone, I had my surgery on the 12th and I’m doing ok! They went in via thoracoscopy and saw that my upper lobe was significantly smaller than it should be (likely just a structural anomaly). So they had to go ahead and perform a mini thoracotomy and take out the entire lobe. It was really tough at the beginning but I was still able to get up and move around in the hospital and I went home after 3 days. Each day gets better and I’m thankful to have my brother in town to help. Thank you also to everyone who posted with encouragement and resources, it was all very helpful. Does anyone have any suggestions on how to deal with sharp diaphragm spasms/pains? Is there anything to be done to lessen the pain and/or spasms or will they ease up with time? They were really bad in the beginning then subsided and have now started up again since increasing my amount of movement/time walking. -Dina
  21. NYC GUY

    Lung Nodule

    I have a lung nodule that was an incidental find at 6MM. was scanning every year for 3 years and it didn't grow until this February it is now 9 MM. My doctor said we should remove it or biopsy it. I felt might just be better to remove. I got a second opinion and doctor at NYU said same thing. I am in my 40/s former smoker, my father had lung cancer in his 40's. He survived after a lobectomy and is now 80 years old. Do you think removal is better or should i be taking a PET scan or biopsy before moving forward with removal. DR said he would remove it and test it while i am in operating room and if cancer clean out more, if not close me up.
  22. Earlier
  23. Hi Denise, Wondering if your pain ever subsided? I had a 2.5×2.5 cm nodule removed in May of 2023 and am still in pain. I have resisted opiods thus far because they scare me, but gabapentin is just not cutting it anymore. Finding incredibly difficult to concentrate and function at all. Thanks, Jason
  24. Bob G

    lung nodule

    Hello, I have had Lung nodules going on 8 years since I had bowel surgery and when coming out of surgery had to be kept on a ventilator for 2 weeks due to raspatory failure (30 years of smoking) . I have COPD consisting of emphysema, chronic bronchitis and asthma. I quit smoking when in the hospital in 2016 with the above mentioned surgery. I had 2 small nodules due to scar tissue that have been stable in size and shape. in a recent CT scan (12-2023) another nodule showed and was solid and spiculated. I since have had two other CT scans and it has tripled in size in 3 months to 7.7mm. I have a 4th CT scan on the 1st of April as they want it to be 8mm before they decide to biopsy or next course of action. At this point its like a roller coaster waiting then thinking you are getting somewhere just to go up another hill and I just want to level out and get on with what needs to be done.
  25. ASTRIDE: A Randomized, Open-label Study of Serplulimab Plus Chemotherapy (Carboplatin-Etoposide) More info here: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/participate-in-research/featured-clinical-trials Contact: Marshika Vickers Phone Number: 510-473-2872 Email: marshika_vickers@henlius.com ASTRIDE: A Randomized, Open-label Study of Serplulimab Plus Chemotherapy (Carboplatin-Etoposide) in Comparison With Atezolizumab Plus Chemotherapy in Previously Untreated US Patients With Extensive Stage Small Cell Lung Cancer (ES-SCLC) This is a study to learn the effects of the study drug plus chemotherapy on ES-SCLC, compared with atezolizumab combined with chemotherapy. Atezolizumab combined with chemotherapy (etoposide + carboplatin) was approved by the Food and Drug Administration (FDA) in March 2019 in the treatment of ES-SCLC. Who can participate? This study is for adults who: Are 18 years of age and older Have been diagnosed with ES-SCLC Have NOT already received treatment for ES-SCLC Note: If you have received chemotherapy for limited-stage SCLC, it must have taken place more than 6 months before starting this study. Other criteria also apply.
  26. Stay the course, Kathy!
  27. After receiving some good news on my brain and liver MRIs (no met), I started treatment a couple of weeks ago. While I am not a candidate for surgery or radiation at this point, I remain at Stage III C, NSCLC. They have started me with four cycles of weekly chemotherapy, as well as immunotherapy every 3 weeks. I will complete my first three-week cycle this coming week. So far, I am feeling pretty good. Just tired. I decided pretty much from the get-go that I did not want to know my prognosis. I have not asked my oncologist and he has not told me. I have erased what I have read online from my mind and I refuse to google anything more. Here’s why. It has been over twenty years since my mom died of pancreatic cancer. The doctors gave her 3 months to live, but she survived nearly two years. It was her refusal to give up hope and succumb to negative outcomes that helped her extend her life. And I am grateful for the extra time I had with her. If I’m focused on a deadline of when I might die, I could easily lose hope. So I’m not going there. I have decided to live and appreciate each day, regardless of how much time I have. And that means being vigilant about my attitude and everything I do. I intend to focus on living. When I look around at all the survivors who have come before me, I am in awe. You give me hope and strength.
  28. Hi Stephanie and welcome here. Edive buddy is right that expecting blood levels to stay the same isn't realistic. Neutrophils- white blood cells that fight infections- especially take a beating, My lung cancer was stage 1a and I didn't need chemo., but 12 years ago I had a different cancer that was stage 3 and aggressive. Chemo caused my neutrophil count to dip and the second time it went to zero, an emergency situation. I was given antibiotics to stop possible bacterial infections . After subsequent infusions I had neupogen, given by injection, and it kept my neutrophils from crashing again. I also had an infusion of packed red blood cells when anemia reached a dangerous level. My treatment was 12 years ago and I have been NED (no evidence of disease) since. My point is that if blood levels of anything reach a dangerous level, there's usually some action that can be taken to remedy the situation- medication, biologicals, supplements, postponing your infusion until the level rises, etc. It usually isn't a reason to discontinue a regimen that's working. Advanced cancer of any kind is life-threatening and treatment often needs to be aggressive to control it. So hang in there, talk to your oncologist about the significance of each level that's low, and what if anything needs to be done about it. Hang in there and I wish you a long and meaningful life. Bridget O
  29. Thank you for the suggestion for drug to boost my blood cells! I’ll discuss with my oncologist.
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