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  1. Jeng, you know your husband better than we do (obviously) but the PET CT is not a diagnosis of cancer. Don't get me wrong--everything points to this being cancer, but you said he prefers not to dwell on it and I can tell you that my own attempts to understand radiology and lab reports have often steered me wrong. The doctors are the experts, so I would suggest letting them explain to both of you what the scans and other test results mean at his next doctor visit. Maybe make a list of questions you'd like answered to bring with you to the visit. Another thing I do is ask the doctors if it's OK to record the visit. I have an app on my iPhone called Just Record, and I tap a button and it records till you turn it off. That way, I'm not trying to write things down and missing other important info, but I'll have something to refer back to if there is something I don't remember. As I said, just a suggestion.
    8 points
  2. Hi Citrine! My history is similar to yours. I had breast cancer in 2008 and have been NED (no evidence of disease) after having a lumpectomy and radiation. In 2011, I had a cervical/endometrial cancer that was a rare and aggressive type. I had a radical hysterectomy, but mine was followed by chemo and radiation. I've also been NED on that one. During a routine CT to watch for possible metastases of my gynecologic cancer, a small nodule was found. A followup CT found that it had grown a little. I was sent for a PET scan, and nothing showed up. My pulmonologist said that small and slow-growing cancers often don't. She also looked at the CT (not just the radiologist's report) and said that the nodule looked more like a primary lung cancer than a metastasis. Because of its location, this little bugger couldn't be biopsied without removing the lobe. I agreed to a lobectomy (in 2016) and it turned out to be a non-small-cell lung cancer (adenocarcinoma) stage 1a. I was relieved to find it wasn't a metastasis. The surgery was considered curative, so no further treatment was needed. However, I am having regular CT scans, because lung cancers are prone to recur. So far, NED on this one, too. As to interpreting your latest CT scan, a good person to do this is an experienced pulmonologist, who can look at the scan itself and not just the radiologist's report. A PET scan is a good idea, too. But the only thing that definitively diagnose cancer is a biopsy. I suggest you check with your doctors to see if a biopsy can be done by needle or by bronchoscope. (These would likely be done by an interventional radiologist.) If biopsy can't be done in one of those ways, you might want to consult with a surgeon about a surgical biopsy. Sometimes this can be done short of removing the whole lobe and sometimes not. One thing I can say about my lobectomy was that it was WAY easier than my radical hysterectomy. You might want to get a definitive answer by biopsy before your nodule gets any bigger. Lung cancer is no longer the death sentence it was once considered. The earlier it's found, the easier it is to treat. Most, when found early, are pretty curable. Bigger ones are treatable and sometimes curable. There are lots of new treaments in the last few years, and others are being approved regularly. And, it this does turn out to be a metastasis, you'd want to to get treatment ASAP for that. And maybe it will turn out to be something benign. It's understandable that you're "going crazy" right now, but hang in there, things will get easier once you know what you're dealing with. Read some of our stories on these forums and let us know what questions you may have and how we can support you. Bridget O
    7 points
  3. Hey y'all, I just got the pathology report and the results are benign! "Benign pulmonary parenchyma with necrotizing granulomatous inflammation...GMS stains, performed on the blocks 1A and 1B, are positive for yeast form fungi, morphologically compatible with Histoplasma species." Shortly before I received that, I received the Fungal Profile-Serum blood test results that were done a couple of weeks ago. They showed high levels of Blastomyces Antibody, Histoplasma Yeast and Histoplasma Mycelia. Things I've learned: Histoplasmosis can cause pulmonary nodules with hilar and mediastinal adenopathy that mimic malignancy. Fungal smears and fungal antigen tests can all be negative but the biopsy can still show a fungal infection source. Don't immediately rule out a benign cause of pulmonary nodule/englarged lymph nodes based on trying to google test results. In fact, stay off the internet all together except to discuss favorite milkshake flavors with @Rower Michelle. Thank you all again for the good vibes and words of wisdom. I know so many of you and your loved ones are fighting the good fight with such grace and overcoming obstacle after obstacle. You all gave me hope that no matter the diagnosis, there are countless stories of survival, faith, good humor, and kicking cancer's a$$. You all are my heroes.
    6 points
  4. Gosh, I am in awe of what I am reading in this forum. Although I am generally of a positive mindset, I am actually starting to be optimistic seeing all the real-life story of people halting this nasty disease in its tracks. Reading about your journeys, ups and downs also helps me mentally prepare for the road ahead. I am so grateful for all of you sharing. And yes, as someone working daily with statistics and (mis)information, I am conscious of the dangers of Dr Google - but he did lead me here, so not all bad😜
    5 points
  5. Jeng, My wife as caregiver was not a miracle worker, and I was not a model patient. She had to "encourage" me to complete diagnostics, prod me to pay attention to oncology consultations, and play drill sergeant driving my laps around the ward hallways after my surgeries. My point: only one of you needs to engage to drive diagnostics, treatments and outcomes. So, drive. My wife was not particularly kind to me during my treatment, but her tenaciousness and overwhelming dedication to the cause was what saw me through. Only one needs to ask the terribly preceptive questions during consultations. When the doctor suggests a course of treatment and your husband hems and haws on agreement, just say: "Doc, we'll email or telephone you an answer tomorrow." Then work on him at home. Lock and load, put on your Smoky Bear drill sergeant's hat, and motivate. Stay the course. Tom
    5 points
  6. Hi Jeng, I'm sorry to hear that your husband is having lung problems. An experienced doctor can make an educated guess at what something on a CT is, but a biopsy is the only thing that will diagnose cancer for sure. With something 8cm in the lung and enlarged lymph nodes, clearly something is amiss. They have set up a thorough array of tests for your husband and when you have the results of those, you should know what he's dealing with. If you have a chance to directly ask the doctor the meaning of the "consolidation and infiltrates", that's a much better way of understanding the CT scan than trying to figure it out by googling. It would be great if your feet were on solid ground going into this, but everybody is at sea with the uncertainty of diagnostic processes. The waiting is the hardest part. If it does turn out to be cancer, you need to know that lung cancer is no longer a death sentence. There are a lot of new treatments that let many people live and have a good quality of life for a lot of years after diagnosis. And new treatments are being developed all the time. So hang in there, keep us posted, ask questions, and let us know how we can support you.
    5 points
  7. Just to give some perspective as to how fast the research is moving…. Three years ago I was told upon learning my stage IV diagnosis to get my affairs in order…quickly. New biomarker methods identified a mutation the “old” testing missed. So hold onto hope there’s a new horizon for lung cancer survivors.
    5 points
  8. Rower Michelle

    Pulmonary emboli

    Hello and welcome, Thanks for joining our group. A few of the members in my LC support group have had PEs shortly after diagnosis, they were all hospitalized for at least a week to receive IV blood thinners and were discharged following a confirmation via CT scan the clots were responding before going onto Xarelto. Unfortunately this is a common situation. It is serious condition but treatable condition that requires long term medication. With a stage IV diagnosis, SSDI will be approved, there is a six month waiting period before payments can be received and two years before Medicare eligibility. It’s possible to work and earn a small amount of money each month. The best source of information is contacting the Social Security Administration directly as the internet is loaded with misinformation. You’ve been through a lot this summer- I hope your scans go well for you. Keep us posted. Michelle
    5 points
  9. Tom Galli

    Concerts

    Lexie, I do indeed recall when life was uncomplicated by COVID safety considerations. What I've learned about our COVID "lockdown" and other protocols is that some won't and exposure for me, personally, is very dangerous. I got my booster last week and I am isolating again. I've cancelled a fall trip to my niece's wedding, and we've decided we are staying home for the fall holiday season. While symptoms of those who suffer a breakthrough infection are described as minimal, minimal with my very stressed pulmonary system might kill me. I read with interest a very interesting article published in The Atlantic written by an infectious disease specialist and epidemiologist. The article asks what is the COVID endgame and asserts that some version of this disease may linger and become like our current flu. We have to "recalibrate our expectation about what makes a vaccine successful." Here is a link to the article. So I conclude I need to carve out a COVID new normal for me. It will likely include avoiding crowds in doors or out and certainly avoid flying in any form of commercial aircraft. How dangerous is this virus? We have a young former special forces soldier, recently discharged for the Army, who joined our American Legion Post. He was in fantastic shape, running 10 miles-a-day, and prior to his now more than month-long hospital COVID admission, he deemed himself to be COVID bullet proof. His long-COVID experience includes symptoms like swelling of the optic nerve. He might not see again. I conclude that there will always be a subset of people who will ignore the rules. We see evidence of that in our legal system, tax code, and even in daily driving. I don't think we'll ever change that element of society misbehavior, and so I need to alter my life. It is inconvenient but given my compromised pulmonary system, it is the right thing for me. Glad that you are on the mend. Stay the course. Tom
    5 points
  10. Tomm

    Durvalumab

    Hello All... I thought I'd visit this really quiet support forum. I don't see questions coming from new Durva people or anyone telling us how their infusions are going and if they are having any side effects or questions. How is your blood work, fatigue? Are you having your TSH checked? Mine went up to 139 with no one testing, normal is .3 to 5 mU/L. Get your Pd-L1 checked too. I want to share my good news with my fellow travelers. Today is my 5 year canceranniversary. After all the tests I was diagnosed with Stage 3a lung cancer. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo. I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and lucky me after that I got to take Durva. I have been in remission for 3 years now. I want people to know there is hope and Durva does work for many. Stay safe. old joke ....My aunt’s star sign was cancer, pretty ironic how she died. – She was eaten by a giant crab
    5 points
  11. LouT

    Justin

    Hi Justin, Welcome to the club that nobody wants to be a member of. Let me first tell you something you need to hear; "Lung cancer is NOT the automatic death sentence it once was!". We have members here with as much as 16 years since diagnosis with cases starting in Stage 3. Now, the other thing I can tell you is; stay away from Dr. Google, it is not your friend and the data they use is averaged over a 5-year period so it does not reflect what is happening on the ground right now, today. We all have a lot of experience to share with you and will be happy to answer your questions. Just know that from now forward You Are Not Alone. One of our leading members wrote an excellent treatise called "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find that here. As you learn more of your diagnosis and develop questions please share them here and we'll provide the best responses that we can for you. Receiving a lung cancer diagnosis is overwhelming, but do your best to stay calm and focused on learning more about this disease, spending some time here and getting involved with your treatment team. Also, if a biopsy is taken (surely it will be) you need to advocate for biomarker testing to see if there are any genetic anomalies that would make you eligible for immunotherapies now or in the future. Hang in there, and I look forward to hearing more about your case and any questions you have. Lou
    5 points
  12. UPDATE: VATS for Lower Right lobe lobectomy and 2 lymph nodes removal on Wed. Aug 25. 2021. This was done at Hershey Medical Center in Pennsylvania. I was discharged Friday morning. My chest tube was my biggest owie, which wasn't big. An occasional air bubble when I moved but very tolerable. Since being home, my biggest issues is getting tired and needing a nap. My breathing is great. Didn't need my wedge pillow. I honestly can't tell I had this done. I'll take it, definitely. Oncology follow up mid September, crossed fingers, good vibes and prayers. Hope everyone is doing well. Stay safe. Thank you all for being here for me, someone you don't even know. ~Kris
    5 points
  13. Hi there, and welcome. First, no beating yourself up for smoking. If you're still smoking, obviously you should quit, but the rest is water under the bridge. I smoked about the same amount of time as you. But lots of smokers never get cancer and lots of non-smokers do. It's a moot point at this juncture. Second, the majority of lung nodules are not cancer. What is your doctor recommending? Unless any of the nodules are big enough to biopsy, the usual course is to re-scan in a few months and see if there are any significant changes. So don't get ahead of yourself. The good news is that lung cancer isn't what it used to be--there are amazing new treatments available all the time and we have quite a few long-term survivors here. Keep us posted and try not to get carried away with possibilities.
    5 points
  14. Just an update for anyone stumbling across this thread--first scan was terrific. My doc had told me not to expect too much from first scan, but he was over the moon excited about it. Hopefully the response continues to whittle down the tumors.
    5 points
  15. Just got my blood test results, “excellent response to spike protein detected”. Recommendation is to re-test in a few months since my second shot was on 4-1. The general concern is with getting a third shot now would be worse than anticipated side effects. So the next arm jab will be for the flu in late September.
    5 points
  16. Minh, I'm a fairly newly-diagnosed Stage IV lung cancer patient (diagnosed in April 2021) so I cannot offer you all the wonderful advice and knowledge that all these many folks with years of experience and survivorship can give to you but I noticed we live in the exact same town in Indiana. I am curious, though, why you are traveling down to Texas for treatment when Community North is partnered with MD Anderson for cancer care. We have absolutely awesome doctors right here in our own backyard that have been trained at MD Anderson and do treatment boards with them on a weekly basis to discuss patient's cases. My oncologist at Community is Dr. Bhatia and he is one of the best around our area. You can get treated locally with all the support and knowledge coming from our local providers as well as MD Anderson Cancer Center. Just thought I'd throw that out there. It would certainly save you time, money, and effort to be treated locally with much likely the same suggestions for treatment and likely outcome. DeDe
    4 points
  17. TJM

    New lung cancer questions

    Minh I know its hard but focus on your treatment. Dont stress the cost issue now. Take a deep breath and understand that it appears they caught it early. Your heart issues sound like they were treated well and if anything it's a plus. Hang in there. We are here to help as much as we can. You've already got a bunch of great info. You got this. Peace Tom
    4 points
  18. LexieCat

    New lung cancer questions

    No, I don't think anyone is planning to throw all of that at you--not at once, certainly. Those are all the available treatments that conceivably COULD be used, depending on what testing shows. Few patients experience all of those treatments. I had surgery originally, then chemo/immunotherapy (drugs), and most recently treatment in a clinical trial of a new immunotherapy (using my own immune system). If that doesn't work, I'll likely be in another clinical trial with more chemo or immunotherapy. I'm not a good candidate for radiation due to the location of my tumor and I can't use targeted therapy because I have no targetable mutations. What kind of treatment you get will depend on all the information gained from the testing. Best case would probably be surgery with adjuvant chemo. That wouldn't last too long and there's a good chance you could continue working. Believe me, your situation is far from hopeless. But you are going to have to wait for the testing to be done. Lung cancer is full of uncertainties. It's best to work on learning to live with that. It isn't easy, but we've all had to do it. Even when treatment eliminates evidence of disease, it's still possible for it to come back. I'm not saying that to scare you--lots of people are very successfully treated and have gone years and years cancer free. But it is a reality and no matter what you do, there are no guarantees. OTOH, there are no guarantees how long someone WITHOUT cancer will live. There are accidents, acute or chronic medical conditions, etc. I look at it as having a heads-up about something that is still treatable.
    4 points
  19. LexieCat

    New lung cancer questions

    First of all, if you do have Stage I cancer (a or b), you might only need short-term disability. I was out with friends for dinner and a concert two weeks after my lobectomy and back at work about a week later. You might not need any further treatment, depending on what they find during surgery. Some Stage I patients get adjuvant chemo, but it's often not that debilitating. The only way you can qualify for Medicare before age 65 is if you received Social Security Disability (SSDI)--but you qualify only after you've been on disability for two years. Stage IV patients automatically qualify for SSDI; lesser stages might require a lot of documentation, appeals, etc. I would STRONGLY suggest you not get ahead of yourself. It's frustrating to wait, but you really have to deal with all of this one step at a time. Since you're being treated at MD Anderson, it's likely a tumor sample will be sent out for biomarker testithng--ask to be sure they do that. Biomarker testing will show whether your cancer has a mutation that would allow targeted therapy (i.e., a pill) in lieu of chemo. The good news is that new treatments are being developed every day. I'm Stage IV, had my cancer progress after chemo/immunotherapy, and I was recently treated in a clinical trial. I'm hoping that will have a great outcome, but if it doesn't, there are tons of other trials out there. So do your best to keep cool. We have a lot of long-term survivors here on the forum. You are going through the hardest part right now. You will start to feel better when you have all the testing done and a treatment plan in place. Just to save wear and tear on you, I'd suggest seeing if you can have as much testing done locally as you can. And if you wind up getting chemo, you could probably have your infusions locally and just see your MD Anderson docs when it's time for a more thorough exam with scans.
    4 points
  20. Jeng, Like Tom (above), I've been lurking here. Mostly because I don't have any experience with a chemo-based therapy. But I do recognize that being a Caregiver can be a real challenge. I urge you to take a look at our Caregiver Resource Center that can be found here. There is a lot of experience there that may be able to help you through this. Best of luck to you and your husband. Lou
    4 points
  21. DMaddox

    Pulmonary emboli

    Thank you all! I'm so very excited with these first response results! I burst into tears of happiness. Now if these blood clots would go away so my mobility would be better, I'd be on cloud 9. Whoever thought someone in this position would say that? LOL! Your support and kind words mean everything to so many people who sign on to this forum and have to deal with what we have all been through/and will go through. I'm so glad I found this place! Again, thank you all!
    4 points
  22. DMaddox

    Pulmonary emboli

    LexieCat - The results of my scan were very positive. The lung nodule has decreased from 1.2 cm to 4 mm. The adenopathy in the lymph nodes has "mostly cleared." The uptake in my right humerus (the pathological fracture spot) went from 15.7 to 3.4. No cancer seen anywhere else. I'm happy with these results after only 4 treatments with the triple drug therapy. I'll find out next Monday what they plan to do next. I'm hoping for 5 more radiation treatments to my arm to hopefully lick that spot and I'll just have to wait and see what they say about going to maintenance versus continuing triple drug therapy. I'd almost like to do the triple a couple more times before moving to maintenance. Hopefully since there has been this much improvement already, they won't want to change the regimen. I can't see any reason they would specifically want to at this point but, as we know, I'm just guessing in the wind. I hope your scan had great results too!
    4 points
  23. BridgetO

    Question

    Speech pathogists also do swallow training.
    4 points
  24. DMaddox

    Pulmonary emboli

    Wow, Lexie, such incredible information. I am blown away by the things medical science can do in these days. How exciting! Thank you for taking your time to explain all of what you have been through. It sure does a newly-diagnosed person a lot of good to read there are so many options available for treatment these days. My oncologist said, right after saying you have stage IV lung cancer, is "This is not a death sentence." He said 15 years ago, he would have told someone in my shoes to start getting their affairs together but not anymore (not that that should be overlooked and/or set aside by any means) but just the fact that there are options. I don't even know my TNM, I'm embarrassed to say. I have vanilla NSCLC with no identifiable mutations as well. I'll be thinking of you next Tuesday when we both get our scans Here's hoping we both get good news!
    4 points
  25. BridgetO

    Concerts

    LexieCat, I'm envious of your going to see Clannad live! I'll be interested to hear whether people are following the rules. I have a season ticket to the Oregon Symphony. I've been going for years until last year's season was cancelled due to Covid. I was really looking forward to this season. They do have the vaccine or test rule and require masking, but I don't feel safe enough with that many people at an indoor concert, so I'm passing up at least the first one. Maybe after I get my booster.
    4 points
  26. catlady91

    Justin

    Hi Justin, I'm from the UK as well. My mum was told she had lung cancer before they did the biopsy- it seems to be common practice in the UK. It turns out they were right anyway. As difficult it is to process a lung cancer diagnosis it's not all doom and gloom. Do not believe everything you read on the internet- the statistics are outdated and so many treatments have been approved for lung cancer over the past few years. The very first consultant told my mum that 10/15 years ago her prognosis would have been very poor but nowadays treatment has come far. My mum was diagnosed with stage 3B lung cancer in Feb 2020 and now she's currently NED (no evidence of disease). Her oncologist thinks that she's in an excellent state and mum is currently away on holiday enjoying life! Mum is 72 but they gave her the most aggressive treatment plus immunotherapy. Don't lose hope. This is a fantastic site. The people on here are so positive and helpful. There are people on here who have been living with stage 4 lung cancer for years. Positive attitude is everything. It's as scary as hell when you or a loved one is diagnosed but it gets better. I was so terrified and scared. I saw cancer as the ultimate death sentence but nowadays it's not. Treatments for cancer especially lung cancer are getting better and better. Please keep us updated. We are here for you. This group really lifted my spirits and gave me hope in my darkest days so stick with us. We're going through this journey together. Make sure that you are an advocate for yourself and find an oncologist that you trust and believes in you. My mum had some awful doctors but her oncologist now is amazing. In the UK it's not as common to get a second opinion or switch doctors but if you're not satisfied with the doctor or their care and attitude, don't be afraid to fight and switch to another one. All the best. The first part is scary but the storm will finally blow over. Monica xx
    4 points
  27. LexieCat

    Sandra

    A CT scan tells you only so much. A PET CT is more accurate in terms of showing any metastasis. Certainly no enlarged nodes or visible lesions is better than having something obvious, but I had a tiny metastasis on my sacrum that "lit up" on the PET CT but could be seen only with a later MRI. You'll make yourself nuts trying to figure out what something very preliminary might mean. I say that as the voice of experience, lol. At most, early tests usually give hints of things that should be checked further.
    4 points
  28. Judy M2

    Justin

    I was actually diagnosed with lung cancer in October 2019 based on a CT scan. At the time, my PCP told me it's not a death sentence anymore. It wasn't until after a bronchoscopy that the biopsy indicated adenocarcinoma and biomarker testing showed an EGFR mutation. I was staged at IIIB. So I understand getting that shock of a diagnosis, but try not to panic if you can. Stay away from Dr. Google. I'm on a targeted therapy (a pill) and have been NED (No Evidence of Disease) since April. Please let us know what your testing reveals.
    4 points
  29. Rower Michelle

    Justin

    Hi Justin, I was diagnosed with lung cancer at the age of 51, three years ago. I’m grateful for all the research as I’ve been in remission for almost two years now. There is life with lung cancer, it’s a roller coaster in the beginning for all of us. One of the books I read early on was written by long term lung cancer survivor, Greg Anderson: Cancer- 50 Things to do. For me it was a good road map on how to sort through the chaos and find a way forward. Anyone with lungs can get lung cancer… as Lou said, no one is alone here. Step by step we will help you find the brighter days ahead. Michelle
    4 points
  30. Judy M2

    I Can Talk About Cancer...

    I can talk about cancer (specifically lung cancer) and listen to the presenters at the LUNGevity ILCS Conference all day long. But apparently I cannot tolerate hearing about a broken wrist my husband's pickleball opponent suffered on the court today without almost passing out. Whew!
    4 points
  31. KatieB

    Alecensa 150

    Hi there. I have reached out to the pharmaceutical company that makes this drug and found their patient lead for Lebanon. Please email her directly to see how they may help you. [email protected]
    4 points
  32. Trying to figure things out on your own based on a few lab results is an exercise in futility. I try not to look at most test results (e.g., CT scan reports) till my doctor can interpret them for me. It's too easy to get carried away trying to read the tea leaves. Others here want their test results immediately. Different strokes... Anyway, there are multitudes of conditions that could cause the lab results you mention. Let the docs earn their money and figure it out. Your biopsy results should be back soon.
    4 points
  33. Thanks all for such good information and reassurance. 🙂 I have been smoke-free for almost 11 years, perhaps that made some difference. I guess my initial anxiety was heightened by a friend's husband that's undergoing chemo(then radiation ) to try to shrink a tumor that is causing pain. Unfortunately, they are giving him a prognosis of 6 to 12months. My doctor is going to have Radiology schedule another CT scan in 1-1/2 months. I have made the mental adjustment to accept the waiting game, and see that a final diagnosis may take possibly years. I would rather endure the wait than get a quick dose of bad news.
    4 points
  34. Even when I was diagnosed with lung cancer in October 2019, my PCP said it's not a death sentence anymore. For me, she was right. Nodules don't necessarily mean cancer. I imagine your next step is to see a pulmonologist. Try not to panic while you wait for your testing to come through.
    4 points
  35. I'm so sorry you are dealing with uncertainity right now. It's a difficult spot to be in. But, I'm really glad you found this space. We are here to support you. I just wanted to share Lung Cancer 101 with you so you can see how lung cancer is diagnosed and some of the steps you might go through. There are many, many times where nodules are not cancer, but there is a ton of information here in case you need it. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer
    4 points
  36. Tom Galli

    PET and Biopsy Next Week

    Steph, Linear plural tags; yes I’ve seen the term. They are a strand of tissue extending from a nodule to the pleural surface of the lung. It is kind of an old school term. One of my tumors was characterized as having a plural tag in 2007. I recall asking about it and my doc was far more concerned about the tumor than the tag. The PET and biopsy will yield answers. One of the things that make lung cancer so dangerous is recurrence after NED treatment. I’ve had 5 so I know what you are feeling. But, you may need put on your battle rattle and re-engage the beast. Thankfully there are vastly better treatments in hand. And Judy’s advice for lab testing the tissue to check for biomarkers is sound indeed. You can do this again. It is a large pain in the *ss to go back into treatment but if that is required, go with determination to beat it again. Stay the course. Tom
    4 points
  37. Rower Michelle

    Alecensa 150

    You may also want to reach out to www.alkpositive.org or on Facebook. The ALK Positives are an international organization that receives requests like these around the globe.
    4 points
  38. I think I'll do flu shot on Labor Day (our usual routine ever since my husband once got the flu in August somehow) and #3 in October. @ChiMama, I like your Ninja lewk!
    4 points
  39. Roz

    PET and Biopsy Next Week

    Steph, It might be a good time to get a second opinion. If you are waiting four months anyways, it won't hurt to have everything reviewed by another doc. Best, Ro
    3 points
  40. Judy M2

    Pulmonary emboli

    Wow, what great news. Congratulations!
    3 points
  41. Hello from me too. So glad you had an opportunity to meet Bridget. She’s been a wonderful source of information and inspiration for our group. You’re in good company here. While no one wants to join this club- ever- we’re glad you found us.
    3 points
  42. Justin1970

    Justin

    Hi Rikke thanks for the reply, the waiting is a nightmare and I'm dreading the PET SCAN and bronchoscopy and what else they might show, I really hope you start treatment soon all the best Justin
    3 points
  43. Justin1970

    Justin

    Thank you, this is a really hard thing to swallow yet everyone on here seem so brave in comparison to me I really wish I could get some strength from somewhere I feel so hopeless to my family because they are all trying to be strong, I have started some tablets which hopefully will help the anxiety and some sleeping pills so fingers crossed thanks Justin
    3 points
  44. LouT

    Justin

    Justin, Michelle nailed it! The waiting seems interminable, but will be over and once you are fully diagnosed and a treatment plan is laid out you will certainly feel some sense of control returning to the situation. Hang in there and stay strong. You can do this. Lou
    3 points
  45. Jeng, I second Lexie's post about drug company & hospital financial assistance and SSDI. From your description of the bronchoscopy results, it sounds like a Stage IV diagnosis. Stay the course. Tom
    3 points
  46. A couple of things. Most drug companies have financial assistance programs to provide medications to those who can't afford it. Second, many hospitals also have programs to help out with financial issues--ask to speak with the hospital's social worker. Also, depending on the stage, there is Social Security Disability (SSDI). Those diagnosed with Stage IV disease automatically qualify and it takes only a couple of weeks to be approved. The other good thing about SSDI is that after two years you automatically qualify for Medicare, regardless of age. I'm on SSDI and my benefit is approximately what I would have gotten had I taken SS at full retirement age).
    3 points
  47. Barb1260

    Durvalumab

    Just wanted to say hi to all. Michelle I hope your family got through the storms ok. I’m just living life. Hope everyone is doing well.
    3 points
  48. Sillycat1957

    Durvalumab

    Congratulations Tomm! I'm still here and kicking life around! One year after Durva. Last scan was in May, tumor still at 8mm so, yay! I come on here once in awhile to see what's happening, usually not much. Fall is just around the corner. It's great to be alive! Namaste 🙏 Roseann
    3 points
  49. LexieCat

    Justin

    OK, all due respect to your doctor, but to my knowledge (and I've been dealing with lung cancer since my first diagnosis and surgery in 2017) lung cancer can't be diagnosed without a biopsy. There may be strong suggestions that that's what it is, but it can't be definitively diagnosed from a CT scan. Your doctor certainly might be right, and it will turn out to be cancer, but I'm just suggesting you not get ahead of yourself. The PET CT will provide more info, but you really need the biopsy to know what you're dealing with. Anyway, glad you have all those tests lined up. You'll find out, if you're around here for any length of time, that it pays to take things one step at a time. The waiting for tests and results is one of the hardest, most frustrating aspects of this whole deal. But learning to be patient and not get carried away will be good for your mental health.
    3 points
  50. Just wanted to give you guys an update as I said. I started having flank pain again, so my primary care doc moved up my follow up scan. The scan still showed the nodule, so he called pulmonology and they got me right in. The pulmonologist was awesome and thorough. He said the CT-Scan shows the nodule right in the bottom edge of my lung and shows inflammation in the lining, which in turn has caused inflammation between my ribs (thus the crazy flank pain.) I have a CT-guided needle biopsy of the area set up for next Tuesday. Pretty much all of my right and middle chest lymph nodes are very enlarged so he was concerned for lymphoma (and I learned we have a LOT of lymph nodes around our lungs!) He also said we could do a scope to biopsy my inflamed lymph nodes instead, but felt going directly into the nodule would be a better approach. I do worry about lymphoma given my low WBC count on one of my recent CBC tests and high C-reactive protein (but that worry is coming from post-appointment Dr. Google so I'm trying not to put too much stock into it.) Doc said even though there is a chance of lymphoma/cancer that needs to be investigated, we both believe this is more than likely a fungal issue due to the fact that my husband and I have been remodeling and working on cleaning up an old farm and farmhouse that we bought last year. Plus I'm around agriculture a lot in my business. I could have breathed in something from the disruptions in the soil or construction that caused the nodule/inflammation. He's ordered fungal cultures from the biopsy as well and said they could take up to 6 weeks to grow. He said I'd find out sooner if the biopsy showed anything more sinister. He also ordered a lot more bloodwork including antigens for different fungi, a fungal profile, TB, another CBC (which I already got back and everything was normal including WBC - yay!), LDH, Urinalysis, & CMP. I'll follow up again after my biopsy next week. Thanks again for your advice. Hope all are well.
    3 points
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