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"1. Stable posttreatment changes in right lower lung. 2. No adenopathy or recurrent disease.
" I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? Brain check-up next month. Hope you're all having some nice moments in your days. Karen

Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded. In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB. There were few resources in those days explaining lines of treatment or prognosis. The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life. Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice. What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome. Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment. Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.” Finally, consider that if I can live, so can you! Stay the course. Tom

It has been quiet here. I check in daily, and hope the quiet spell is because everyone is busy living life. I have scans Friday and am more nervous than has been typical. On the other hand, we just made plans for a June trip of bicycling the Danube from Prague to Budapest, so I am choosing to think about that (when I can haha.) Otherwise, we've gone all out on holiday decorating and I'm baking up a storm. It's peaceful for now and for that I am grateful. K

Thanks so much everyone. I'm doing okay, but in a way, I knew it was coming. Everyone around me was in denial throughout the diagnosis process, but not me. My loved ones are having a lot of problems. I'll keep you posted 😊

Hi - Glad you found us. You'll likely hear from a couple of other people who will provide links to great information. I don't have answers to your question, but I offer hope. I was diagnosed with stage IV 7 years ago. I'm still here. 😁

Hi, and welcome. I don't know much about cavitary vs non-cavitary lesions, so can't speak on that. but I was diagnosed with a 1.1 cm Adenocarcinoma of my RLL at end of August, 2022. I had a small area of invasiveness in the same lobe, and negative nodes. That's a stage 1, as I expect yours might be too. Did you have a lobectomy or wedge resection? So far, I am NED (No Evidence of Disease) at 9 months post-diagnosis. I did not require chemo or radiation, and since I have a history of smoking, I wasn't tested for targetted therapy. The 6 month CT scan (neck to knees) was negative. The surgery itself was difficult for me. The initial 6 weeks after the lobectomy were difficult, with many after-effects from the surgery including nausea, pain, low energy, bloating, a cough and shortness of breath. Most everything bad was gone by 6 wks. I still have some shortness of breath when i exercise or on "bad air quality" days. I had a month of physical therapy to regain strength and stamina which helped enormously. It's normal to be in shock and scared, but lung cancer isn't necessarily the beast it used to be.

Hey all, just wanted to follow up. Had surgery Monday. As diagnosed it was adenocarcinoma. Dr removed a wedge of my lobe and said cleared margins. He also removed lymph nodes. Feeling lucky for the incidental find and choosing the surgical biopsy . Waiting on lymph node results. I have a Follow up may 9th. Thanks for the support.

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

Hi Dina A. I want to share my carcinoid lobectomy experience with you. I also have immune system problems, like RA and Fibromyalgia and have COPD and asthma. I also had had lots of other surgeries, including 2x breast cancer and thyroid cancer. I was originally diagnosed with adenocarcinoma after a needle biopsy, in the right lower lobe. The cardiothoracic surgeon opted to remove the whole lobe. However, when sent to the pathologist, another small tumor was found that was initially diagnosed as small cell. Then, a few days before my 1st chemo/radiation, the Tumor Board took up my case and found that while the original tumor was adenocarcinoma, this 2nd one was neuroendocrine carcinoid. These tumors often appear in the digestive tract but are not unknown in the lungs. The good news was that removal of the entire lobe meant no need for chemo or radiation for either tumor. I have been cancer free for almost 6 years. However, there is a lesion or nodule now being seen in my (now called) right lower lobe so I have had chest X-rays, CT scan, and a recent PET scan. I don't know what happens next. I am seeing my oncologist soon. However, I had the surgery and was in hospital for 5 days. I had a chest tube, a heart monitor, a lung monitor to measure it fluid coming out of the chest and also in case of a partial lung collapse, and a catheter, but I was very comfortable and was getting respiratory therapy several times a day. I was told that removing the chest tube would be very painful, but it wasn't. Only took 5 seconds and done! I went home the next day. I took it easy for 5 or 6 weeks, and gradually got my strength back and my lung capacity up. I should mention that I was 74 at the time. I hope you can relax a little as going into this journey in fear will make it harder. Continue to ask questions of your Drs. and here. I have had worse surgical and worse chemo/radiations than with my lung cancer. Best wishes!

All I think I had stopped posting before this happened (on advice from a lawyer) but it might be interesting for some of y'all I was sitting in my OSU recliner in late 21 and had an epiphany. I could stay in that fine recliner, get fat, and just wait or I could do something different. When I say I...my wife is included. So we sat down and developed a bucket list. It included a bunch of stuff we both desired. First sell our much to big (with the boys gone) house. Buy my most desired car (CT6-V. Check it out if you like cars) and travel. We decided on starting with a cruise to Alaska to see how well I did. Went with some dear friends (one had LC also and has sense past) and had a fine time. I didn't do all the excursions, but my wife did and had a blast. After that, we decided on a slow trip across the US starting in Washington. Made plans to meet up with friends along the way. Even had lunch with old friends from Seattle at the Mackinaw bridge in the UP of Michigan. We ended in Brooklyn New York where my wifes sister lives. Had my pup Mac with us for the drive. Then we caught the QE2 in Brooklyn and sailed to South Hampton UK. 7 day journey which was fantastic. Had the widow of my second dad join us for the trip. It was magical. Then we spent 3 months taking the train around Europe. From Rotterdam to Barcelona and two stops in France. It was a great trip but I learned that Europe is more divided than even the US. Any desire to retire there quickly dissolved. My two favorite visits were to a WW1 battle site in northern france and Normandy. The cemetery"s were very moving places. Tor du Hoc (sp) was astonishing. My parents generation were an incredible group to have accomplished what they did. Also very special was meeting up with a large group of friends from Longview in Paris for a fun night of food, drink and chat. We then spent the last 3 weeks in England. Being Scottish we had to visit Edinburgh. I highly recommend it if you get a chance. The castle is the best we saw by far. Also, the war room exhibt in London was incredible and wore me out so much I had to rest for two days. We were joined by a special couple. The wife had just survived a breast cancer scare (when we set it up we didn't know if it was a recurrence yet) that turned out to be begnin. What a great week of celebration. We had such a grand time on the QE2 coming from the US we decided to take it back home. In November. Across the North Atlantic! It was an exhilarating rough trip and I was very pleased to find I do not get sea sick. Upon arrival back in Brooklyn I decided to drive straight back to Washington. My wife stayed with her sister for a few days and then flew home. It was the perfect end of the adventure for me. Alone in my bucket list Caddy driving as long and as fast as I wished. I enjoyed it immensely. I can now claim to have traveled from Alaska to Barcelona and back without ever stepping on an airplane! We did spend a bunch of my kids inheritance but I wouldn't do it any different. Sorry for the long post. Tom PS This post does not do justice to the trip. So many stories. So many memories. I have only one thing left on my bucket list. To watch the Lions in the Superbowl live. Is that possible this year? Yah damn right it is!

Lauren, Hi. I’m glad you found us but sorry you need to be here. Your dad is beginning a journey that can have a lot of twists and turns depending on many details. I can’t give you particular detail regarding his condition, but I can tell you that I was diagnosed with lung cancer 4 years ago and am still here surviving and living my life. So a LC diagnosis is no longer the definite death sentence that it once was and there is more hope than ever before. This is a time for you (and your dad) to begin to learn about this disease. This way you’ll be able to navigate these waters more successfully. This is an article titled “10 Steps to Surviving Lung Cancer; From a Survivor” and it can be found here. Both you and your dad need to read this. It was written by a member who was first diagnosed at Stage 3 and then later Stage 4 and 18 years later was considered cured. It’s not everybody’s story but there are many here (like me) who have survived for years, and there is great knowledge for any LC patient, and family. Time to begin learning about this disease; causes, diagnosis, treatments, etc. Take a look at “Lung Cancer 101“. Last (for now) is a forum you may find interesting it is our “Caregivers Resource Center“. I can understand that at this point you are less interested in reading than in “getting something done” to help your father, but knowledge is power in battling this complex disease. You can also look through some of the forums to read what other survivors have written to get a better idea of what your dad might go through now and in the future. I hope this helps you. Lou

Happy holidays to everyone. Hope the quiet is because people are either putting aside their worries for a bit, or celebrating a good spell (like me)!

Kamoto, NED on your chest and abdomen-- WOW! What a wonderful result. I don't have experience with a sore that doesn't heal. It reminds me of old TV commercials about when to check with your doctor, which you're doing. May I, with a little gentle humor, remind you of your last foray into self-diagnosis? Not a fun time. I'm selfishly glad you told us about this-- I've had a weird thing on my arm that I really should get checked out. Ugh. Maybe I need to make an appointment with the dude who did the MOHS surgery on my nose (for some skin cancer.) So, thanks. I hate calling more doctors, really hate. But ya gotta do what you gotta do. So, thanks. And I'll be thinking of you. Please keep us posted. K

When this journey started for me, the nodule they found in my RLL was incidental to a scan I had to see if my diagnosed prostate cancer had spread (it hadn't). I guess I was lucky (if one can call it lucky) that my NSCLC was discovered at such an early stage. So, had the prostate removed at the end of January and my RLL at the beginning of April. Then, back into surgery at the end of June to fix a chyle leak. It's been an interesting year. Anyway, the results of my latest scan is the effusion is greatly reduced and NED otherwise!

I cannot believe your doctor is giving a "do nothing" as an option for a first recurrence of a stage 3, not to mention those life "expectancy" numbers! I am not sure if the Dr has more critical info we don't have (scale of recurrence? type of tumour? your general health?) but the option of just let cancer spread they offered to you sound strange, to put it kindly. We have stage 4 patients living long term and thriving, let alone stage 3. As an oncologist, they should have recommended best treatment unless your health is so poor in other ways or recurrence is very horrific (even then they should offer second line and third line treatments etc and clinical trials). I would certainly go ahead with treatment but feels like you should seek another opinion ASAP, from a specialist in lung cancer at a reputable cancer centre. You got this!

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you. People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! What kind of biomarker data is your doctor working with? And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel. Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. Karen

Jacob, Welcome here. I'm alive 19 years after an advanced stage diagnosis with a total of 5 progressions. I've experienced every form of treatment but immunotherapy, and the last and curative was precision radiation in the form of SBRT CyberKnife. I'm a civil engineer and like you have a deep preference for data and analysis to self-solve problems. But, my analytical approach failed miserably. There was just too much to absorb, the disease was too complicated, and (fortunately) the multitude of treatments available and conditions for their application was too daunting for me to assimilate. I recommend you concentrate on the basics and absorb this material, all of it. Like building routines of software to solve problems, treating lung cancer is a step function. Each step is well defined by best practice, and in the United States, we codify our best practice as national standards of care. These function like our engineering standards and guide the clinician in the application of well-discovered methods and techniques. I'm not trying to tell you that your analytical skills are not helpful. Indeed they will help you rapidly assimilate Lung Cancer 101 and give you a foundation to understand our disease in its myriad of presentations. As an example, you cite immunotherapy as an advance that might apply to your mother. But your description of your mom's condition points to advanced-stage disease and her clinicians will likely want to kill cancer cells quickly. To do so, they might turn to combination "old school" therapies that do just that: perhaps conventional chemotherapy and fractional general radiation. Then, once the tumor burden is lessoned, progress treatment to targeted therapy or immunotherapy. I'll take off my engineer's hat. Analytics have their place but so does faith and hope. To bolster my assertion, look at this photograph from our recently concluded Hope Summit. Our Lungevity Nurse Navigator is in the middle and surrounded by long-term survivors, three of which are still in treatment. I'm the outlier in the upper right. I was pronounced cured 2 years ago. Know you've found us, and we are an assemblage of people who well understand this disease, its presentations, frustrations and treatment. We will help you every step of the way. Help your mom through diagnosis; a biopsy is surely in her future. Help her understand what is happening. Apply your learning from Lung Cancer 101 to explain the first and perhaps subsequent treatment plans to your mother. Help her manage fear. Keep her from despair. Attitude counts. Listen to this noted scientist on statistics, attitude, and prognosis. And, we are here for you to answer questions. Stay the course. Tom

I'm always envious when surgery is an option for someone. It offers such a measurable outcome. For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck.

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET. Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

Hello Dina. Sorry you need to be here but glad you found us. In 2019 I had a resection that turned into a lower-right lobectomy. The surgery went better than I expected and here I am (almost 5 years later) and still NED (No Evidence of Disease). A while back I put together some "Thoracic Surgery Tips and Tricks" and it can be found here. It can help you prepare for your surgery, get you through the hospital stay and also provides information for the post-op period. I can understand how frightened you must be but know that many others (including me) have gone through it and almost universally you'll here us say that it was easier than we thought. I'm not saying it is fun or that rehab is easy, but it wasn't the tragic experience I once expected it to be. Please continue to come here and read, post any questions or updates and let us help support you through this part of your journey. Edivebuddy said it well, that LC is no longer the certain death sentence that it once was. Lou

moment with this disease. As usual my wonderful support system is available to help when ever I need them. In the meantime I continue creating goals to live for and experience with my family. Non are exotic or from any made up bucket list. However every goal I reach becomes a memory for me and my family to hold on to forever. They provide me the will to go forward and face the days I can survive knowing what this disease is known to do to many of us with this diagnosis

I’m an adenocarcinoma stage iv survivor in my 5th bonus year thanks to Keytruda and highly compatible body chemistry. Lucky to have few side effects so far on this journey … I’m 74 and looking forward to another 10 years. This bonus time blessed me with 6 great grand children: 4 boys and 2 girls; few more trips to Europe plus annual visits with friends and family from Seattle to the Keys, Maine to San Diego with stops in between. Gotta go when we can go right? Deeply appreciate your support, empathy, hints, and camaraderie. Hope my own prayers, strength and guardian angels might help others along the way.

Well, this was it — the beginning of what would be several months of “dis-ease.” It began with that phone call from Dr. Russell. I never met Dr. Russell. He was the doctor that my primary care physician called right after the first suspicious x-ray. He called Feb. 23 and said there was nothing he could do for me. It was cancer. “Call an oncologist.” “I don’t know any oncologists,” I said. “I will ask my nurse to schedule an appointment for you. “Thanks,” I think. Next on the agenda was to find an oncologist. Do I know one? Why would I know one? The only person close to me that had cancer was my Aunt Alice and she lived for 20+ years after her diagnosis. My Uncle Ed had a big party for her. He said rather than wait till a funeral we were going to celebrate Alice while she was still alive. Hey, if I survive the next eight weeks, maybe that would be a great idea. To have a party, see my friends before I became too weak or ill to be around. I want to go to my own funeral. I miss her so much. Dr. Reynolds was her doctor. I guess I did know an oncologist. He went to my church and we went on youth ski trips together as chaperones. He told me Aunt Alice was a cancer miracle. I believe she was here so long because she cared for everyone else above herself. She never complained and rarely said anything about her pain. She selflessly prayed daily for all her children, nieces and nephews. Alice was well-known in the community because she continued to work as an ER nurse for many years while fighting cancer. Now it’s my turn. I didn’t feel very hopeful at this moment in time. I felt adrift in a world I never expected to be a part of. A nurse named Kayla called me the next day. She told me about nurse navigators; a term unfamiliar to me. Wow, first the PET scan space ship and now a “navigator.” I needed a pilot. It’s a cool name for someone helping you find your way through everything that you don’t understand about health care. For me that meant a lot. Having experienced nothing but the best of health for 66 years, hospitals and clinics and tests and doctors are on an unfamiliar planet. When I stepped off the PET platform Thursday, I entered “space — the final frontier.” The nurse navigator called and said she would call back with an appointment. The alert that new information was in MyChart came before that second call. A person shouldn’t always read those notes before talking to a navigator. Kayla’s notes were “regarding incoming urgent referral to Dr. Kurniali for newly diagnosed lung cancer.” Dr. Wos was on call that Friday for urgent concerns — declined. Dr. Kurniali would return on Monday. What did that mean? They declined to help me? Were there that many spaceships with patients circling the planet waiting for a turn to land in a doctor’s office? It was a long weekend for sure. I took my phone off silent, something I never do. It’s possible I held it in my hand the entire weekend waiting for a call from the clinic. On Monday, the nurse navigator did call. Finally. She said there was a new doctor in town taking patients. Just arrived from Mayo. The spelling of his name was difficult to pronounce so she said to call him Dr. Rocket. Seriously? First the space ship, the navigator and now Dr. Rocket. Coincidence? The first oncology appointment was March 1 and all 70 minutes packed with more information than I cared to know. It’s difficult to listen to someone when there’s a tape running in your head, “you have cancer, you have cancer.” What Dr. Rocket and his nurses explained to me unfolded hour by hour during the next two or three weeks. The one thing I do remember not seeing the PET scan, I didn’t want to know how much cancer my lung could contain. Without the scan Dr. Rocket simply said, “you have Stage IIIc lung cancer.” “What? It couldn't be Stage I or Stage II? It was already at Stage III, that’s one step below Stage IV.” But, those words were not as scary as, “lung cancer likes to move to the brain, we need to make sure the cancer hasn’t spread.” Wait, what? That’s all I needed. An MRI was scheduled for that afternoon. After plowing through the remains of an overnight snow storm to get to the first of many 8 a.m. appointments, our stay at the hospital was extended by four or more hours. There was no choice, we had to get it done. MRIs freak me out. As silly as this sounds, there are two things that cause panic attacks, fear of heights and fear of enclosed places. When we ski, which I love to do, I white knuckle the chair lift ride to the top of the mountain. But, my biggest fear is being buried alive in a small box. You know like you read in some many horror stories. Naturally the nurse said I could have something to relax me. Thank goodness I had a driver. Medications, even over the counter pain relievers, were used sparingly at our hours. A controlled substance was sure to quickly put me into orbit. We, the nurse and I, after discussing my sensitivity to drugs, decided on .5 mg of Adavan instead of a one milligram tab she first suggested. It was a wise choice. The prescription was for two tablets just in case. There was plenty of time, and no dietary restrictions, for lunch before the MRI. Instead of pancakes we had Panera. I should have gone for pancakes. Pancakes seemed to sit better with my churning stomach. We waited for the prescription to be filled before heading to the MRI building across the street from the hospital. We were early. The nurse called my name before we had a chance to settle in, so I swallowed the first Adavan tablet. Then, more fill-in-the blanks again. Same questions, different clipboard. Always name and birthday. During the intake conversation, I said something opening the door to the nurse asking, “where are you planning on going?” She didn’t mean shopping or out to eat. “I know where I am going. I’m on a fast-track to eternity.” “Would you like me to pray with you?” “Absolutely.” The next 45 minutes were spent trying to stay awake for the MRI. It was a struggle and I paid for it later in stiff muscles from holding myself upright dressed in one of those flimsy gowns and sitting on a straight back chair. Thank goodness I refused a one milligram tab of sedative. The staff would have had to pour me on the MRI platform. It was time. The young man who helped into the next room had a familiar voice. Maybe it was his face as his mask was not properly covering his mouth. “I know you from somewhere.” No response. “Did you go to BSC?” “I’m not from here.” “Hmmm.” He was explaining how the test was going to work. As usual, lay down, really loud noise, inject dye, really loud noise, finished. I have had an MRI before. “I can do it.” Newer machines are not the dark tubes that cause such panic I have to visualize happy places or count backwards from 100 to survive. I keep telling myself if I move halfway through the scan, the techs will have to start over and that would be bad. So I endure the 20-25 minutes. It was over. As, I was positioned on the machine’s hard surface, it hit me. “You buy sauerkraut from me at the farmers market.” He conceded. “I don’t usually like people to know I work here. I still have some of that sauerkraut left.” The MRI was loud, even with ear plugs, loud. I was very happy when that ended. I was thankful for the arm offered as sitting up too fast makes me dizzy, even before I take any drugs. This young man with the southern accent walked me to the dressing room just in case. “Hey,” he said before going back to work. “Do you mind if I tell my girlfriend I saw you.” “Not at all.” Nothing would make me happier. As usual, the test results were in my online medical chart by the time we got home that day. It was a long day, but not so unbearable. The paragraph of findings at the bottom of the narrative included many unfamiliar words and five sentences that began with no. The first ray of hope — my brain was free and clear of tumors.

Hi Laurie, Google is a beast and you did well for staying away. Survival statistics are no longer relevant to most lung cancer patients as new treatments like immunotherapy, targeted therapies, and combinations of treatments are rewriting the script for many, many patients. I saw my main lung oncologist last week, and we talked about how different his job is now. Two and a half years ago when I was diagnosed, a stage 4 diagnosis was still considered a death sentence, and now they have no way of predicting the outcome. One major development is that oligometastatic LC patients (I.e. with fewer than 5 non-brain metastases) are now considered an entirely different category and highly treatable, with a real chance of remission.

@Angelina sounds like you have been through the wringer. I can’t help on SCLC or neuropathy, but on the sugar question it is a qualified “no”. I do think that keeping healthy and avoiding too much sugar (and carbs which are converted to sugar) helps you get through cancer treatment easier. However, except in very specific cancer types (not SCLC), sugar does not feed tumours. I really like this article which sets out the evidence to date: https://www.nytimes.com/2023/07/10/well/eat/sugar-cancer.html

It IS quiet. Thinking of you all in this holiday season. Hoping for good scans Karen❤️

It sometimes gets very quiet and other times not so much. But I'm so glad the outlet is here for anybody needing to connect with others going through this journey. I'm also thankful for the folks, like yourselves, that welcome and support those who do need to come here. I hope the Christmas and Hanukkah holidays are filled with good things for you. Lou

Hi Tom. I do remember you. I hope all is well for you. Yes, I was my mom’s advocate, atleast as much as she would allow. She was a fiercely independent lady which was a curse and a blessing. LOL. As I’m starting this diagnostic journey I realize how little I actually knew about how she felt when she was at this stage. I’m meeting with a Thoracic surgeon tomorrow to see what she thinks. I’m pretty sure she’ll want to see my next CT scan (in January) before going forward. But I’m anxious to hear what she says the next steps may be if the CT scan shows any changes. I’m sure I’ll be back here with a million questions. I feel like everyone here is my best resource and I appreciate that more than I can say.

I am doing much better and the intense pain has subsided. My tumor was 3 centimeters, stage 1 mucinous adenocarcinoma in left lung. No lymph node involvement. My onocolgist said no chemo or radiation so I feel very fortunate. I will have ct scan in 3 months because chest xray at surgery appointment follow up showed spot on right lung. Thanks for all the information it sure helps guide me in this journey. Julie

Those dark moments of the night once made me invest in a night light. (No kidding.) Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? Here's hoping you have a wonderful visit with your daughter this Thanksgiving.

Sam I too struggle with anxiety and fear not knowing what my future is. I've been NED for 1 1/2 years now. I live my life and do the things I did before diagnosis. Sam keep fighting you CAN get there Chuck

PET scan day. Another day, entering the unknown. The weather was awful, so we left for Bismarck early. My desire to get these exams over and done outweighed my impatience at sitting in hospital and clinic chairs for hours at a time, staring at the walls, watching solemn faces entering and exiting. Although arriving early to appointments, we never had to wait long to enter the inner sanctum of the hospital, those closed doors to the great unknown led by people much younger than myself who always want to know your name and birthdate. About five minutes from the hospital parking lot, the radiology tech called to make sure we would make the appointment. Snow was falling, and it was blustery, but not impossible, to navigate the streets. The problem was the snow in the driveway leading to the county road and then the county road connecting to Highway 1806. It took some time and man power to clear a path from the garage to the road. County plows had miles and miles to clear, and many times it was late afternoon when they reached our neck of the woods. This winter had started early and was relentless, with snow piling up around around our yard and the wind sculpting a most beautiful prison wall around the house. Our house has three exits. Thie first challenge of the day this winter was finding a door that the wind hadn’t packed full of snow overnight. But heck yea, we will be there. I’m not going to miss this appointment. But, with this wild winter — storms and snow, and travel warnings nearly every week, there were more than a few moments of panic as our path to the hospital began shrinking with every passing weather alert. It’s North Dakota. We have lived here all our lives, and cold, windy, snowy days don’t always mean you can’t get around in town. But living in a semi-secluded place without a farm tractor to move those drifts became an issue. The weather was much better Thursday than Wednesday when we went for the biopsy. I could NOT miss either of these tests. “Absolutely, we will be there in about five minutes,” I said. “We will be there 30 minutes early for the appointment.” It paid off to arrive early. After a very short wait, a young man in a mask, named Max, called my name. No one really explained the PET scan. Maybe I wasn’t listening, I found some notes about not eating or drinking six hours before the test. I knew I had to have an injection and wait for the solution to make its way through my body, followed by the scan. It would probably be two and one-half hours at best. I longingly looked at the water fountain over my shoulder as I said goodbye to my husband and followed the young man down a long dimly-lit green hallway. It was cold. Really cold. We entered a room, or sort of a room with an industrial lift. You know, a platform with a railing like construction workers would use to paint a ceiling. “What’s this?” “Can’t have you guys walking up the stairs now, can we?” Max said. He all but strapped us in with safety harnesses, and up we went. It was a smooth ride. As we rode the lift a mere four feet to a bank of computers, another man in a mask turned his chair around but didn’t say a word. I had no idea if he was smiling or not. That’s the trouble with masks. To the left was what looked like an airport jet bridge. You know, like an airplane connected to the walkway connected to the terminal. It was even colder in this room, if you could call it that. At the end of the jet bridge, an empty scanner like the ones for the CT scan took up a substantial area in a dark room. I found out later that it wasn’t a room but a semi truck trailer in disguise. It looked more like a space ship. Max guided me to the right to another very industrial-looking room. Once I settled in one of two chairs separated by a divider, he drew some blood, checked my sugar and put an IV in the vein in the crook of my arm. He carefully put on a new pair of rubber gloves and lifted a canister from a heavy metal cooler in front of yet another couple of computers with ever moving screens and blinking lights. The room has an eerie atmosphere under the fluorescent lights and bare walls. The radioactive symbols, the lights, cold and darkness were reminiscent of the 50s sci-fi movies I watched on the old movie channels. Remember, I love Star Trek. Most websites will tell you you receive only a small amount of radioactive sugar called fluorodeoxyalucose-18, FGD-18 for short, it sure seemed like a lot more in my head. Thank goodness once the radioactive glucose was injected, the IV was removed. I hate those things. I’m sure I commented more than once on the chill in the room. Max grabbed a heated blanket, helped me spread it over my legs, and drew the curtain. He said he would return in 45 minutes. UGH. The chair reclined but not enough to be comfortable. I was cold and not prepared for the starkness of the room. The computer was the only light I could see. The numbers went up and down with no rhyme or reason. I tried to close my eyes and relax. Thank goodness I didn’t notice the clock on the computer until at least 15 minutes had passed. I waited with my eyes closed, hoping the time would pass quicker. Max came back, but not for me. It was only then I realized someone was waiting behind the curtain hiding that second chair next to me. If the scan lasted 30 or 40 minutes, that meant at least 30 minutes till my turn in the scanner. This experience has been a lesson in patience for sure. After more time had passed, Max returned and asked if I wanted to use the bathroom before the scan. I said sure, at my age not wanting to miss an opportunity to pee. Rather than go out past the waiting room where my husband was reading, we went down another hall, a locked elevator, a couple of wrong turns and a restroom with that same circle in yellow and maybe red. You know, the radioactive warning symbol. I don't recall right now. PET, or Positron Emission Tomography, is a nuclear imaging technology. According to a Stanford Medical website, “Nuclear medicine is a branch of medical imaging that uses small amounts of radioactive material to diagnose or treat a variety of diseases, including many types of cancers, heart disease, and certain other abnormalities within the body.” Thinking about radioactive materials, on the way back to the scanner I said, “Might I glow in the dark?” Max said, “Sorry, no.” Oh well, I tried. Obediently, I followed him across the jet bridge into the space ship, then into the scanner and out again. It was painless. The platform moved ever so slowing from the top of my head to my knees pausing at intervals to complete a scan section, or at least that’s what I assumed. They said I did good, meaning I didn’t wriggle around. I got up and we went down the lift and out the key-coded door to the waiting room. Much to my surprise and joy, another friend, Diane, had taken the time out of her day, made her way across the snowy Missouri Interstate 94 bridge and kept my husband company during this unknown ordeal. There she was, and I was overwhelmed with gratitude. It meant a lot to me that she showed up and agreed to go to lunch with us before she was off to donate blood. I had been craving pancakes for days.

Hi SamGirl, Sorry to hear about your recurrence. LC is one of the most recurrent forms of cancer so we do live with that aspect of the disease. I had my lobectomy (LRL) in May of 2019 and through this past August I have been NED. Despite this I know that there is always a possibility for recurrence (even at my Stage 1 there is a recurrence rate of 30-35%). But like you, I just try my best to live my life and not focus on the cancer. Otherwise I'd lose all the joy of living and that would be a tragedy. Regarding the lymph node... I'm assuming that you have a recurrence in the lung and something is showing up in the lymph node as well. Was that discovered with a CT or PET Scan? Either way, in answer to your question "Yes, I have seen many of our survivors here who've had recurrence and different types of involvement and have come through treatment NED.)" There is quite a bit of hope offered considering the large number of survivors on this site and forum, and I hope that you'll take a bit of time to read a blog titled, "10 Steps to Surviving Lung Cancer; From a Survivor". It can offer some important information on surviving this disease. Please keep us updated as you continue your journey. Lou

Hi Blossomsmom. I would immediately make an appt. with an oncologist. But if you can't get in soon, try for a pulmonologist. As you may know, one doctor can sometimes get you in to another specialist a lot faster than you just trying yourself. With your lung cancer experience with both parents, your smoking history, I can't believe your Primary wants you to wait 3 more months! (Personally, while getting this all set up I'd also be looking for a new PCP). I already had an oncologist when I was diagnosed with lung cancer as I'd already had breast cancer twice and thyroid cancer. I also already had a pulmonologist because I had been diagnosed with COPD (from 30 years smoking) and also asthma. My family history was that my father and his father both died of lung cancer. I was very lucky to have good medical care and am considered NED at this time from all cancers. I wish you well and please do be proactive and get a specialist to see you and check up on that nodule. Please let us know what you find out! We all care! Best wishes, Momma Om

Hi Mary Ann I was diagnosed with 1b in 2021 had upper right lobe removed no other treatment, I have had 6 monthly scans since then the last one will be next week if all is still well after that I will go to annual scans for the next few years. I have made a full recovery I walk my dog daily and really live life to the fullest, I do take care to avoid Covid and other respiratory virus's by still wearing a mask in enclosed public spaces so far, I haven't had any of them hopefully that will continue. Take care may all be well. Blessings Marilyn from Australia

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/ Karen

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V. Here are a couple of links I hope some will find interesting: https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10 https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219 Best to all, June

My situation was a little different as I underwent chemo radiation that shrunk everything a lot. My oncologist then wanted me to consider surgery. Radiation was high dose which makes surgery more difficult. I too saw a surgeon who was “willing”. To do the surgery. However the complications, especially because of the high dose radiation, were daunting. I determined not to do the surgery and started immunotherapy. The immunotherapy (durvalumab) has failed and in a mere three months the cancer has spread to many lymph nodes and my other lung and liver. The surgery would not have prevented this. I also have mild copd so can identify with your mother. I would agree with The other comments and get more input from lung cancer specialists.

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

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

Goals!! I’m gonna give it my best, day by day!

Hi Johnny, Sorry to hear you are going through this. For what it is worth, it will probably be the mentally toughest part of the ordeal. Once you have a diagnosis and have shared with those who need to know, you can move on to the “action” part. As you will see in this forum, lung cancer need not be a downhill spiral. Many do really well on modern treatments. Only you will know who to share with. I have a very big circle of friends and family, so I split mine into a few different groups: 1. Close friends who I told immediately as I needed their support 2. My dad who I told when docs were fairly certain, but before final results (he is a doctor so knew he would want to be part of the process) 3. After diagnosis and once I knew my treatment plan I talked to remainder of my close family and friends, as I wanted to be able to tell them with a clear plan, so they didn’t have to wait and worry 4. Everyone else (personal contacts) - made a Facebook post. It made it easier for everyone to know, and not be the subject of rumours and misinformation. And 5. Work network, only some people know, as and when it feels necessary. I think most of my network know now, but as it has been almost 2 years and I have seen most people in person, there is no longer much shock and drama… Personally, I think it was a balance between my need for support, but also not having to carry other people’s worry and grief. But it did help me having a bit of a strategy (this is what I do for work, so guess it is ingrained). All the best, Rikke

Hello, My name is Amy Sheldon and I am a new member. My legal name is Amy Zuchelkowski but my friends and colleagues know me as Amy Sheldon. I am an RN and have been working in Oncology for the past 8 years. I joined this forum because I am a huge supporter of patient advocacy. With the complexity of the health care system, it is important to ensure patients are educated so they can advocate for themselves to get the best possible care. I am excited to be part of this forum and I appreciate the opportunity to join you.

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

He just started. I sure do hope that when he hits his bottom, you don't stick to this no sugar nothing good diet. i wanted to be able to taste. i was getting only 400 calories a day, and a box of sweet tarts may have helped me stay alive. sometimes my only tolerable food was a McDonalds Filet o Fish. he will need anything he can tolerate. Being naturopathic while battling chemo radiation sounds good, but staying alive is more important. Tread lightly down this road.

Hi Ginger and welcome. Like you and Lou, my LC was caught early on a scan you could probably call incidental. I had a right lower lobectomy, diagnosed ad NSCLC Adenocarcinoma Stage 1a. . This was in 2016, so I'm now almost 7 years out and NED since my surgery. I'm 77 y/o, working part time and have a really good quality of life. Keep us posted on your recovery. I wish you all the best. Bridget O

Hello! You've gotten some good advice from folks on here about caution. I've had 3 primary cancers. My most recent was a stage 1 NSCLC, which needed only surgery (lobectomy) and ongoing surveillance. My second one was a rare and aggressive gynecologic cancer, stage 3, for which I had a huge surgery, concurrent radiation and chemo and additional chemo. My first was a stage 1 breast cancer, with lumpectomy and radiation. Beginning with my first cancer diagnosis and then again with the other two, I went to a local clinic that offered complementary therapies. I had acupuncture two or three times a week, supplements and Chinese herbs, and shiatsu massage twice a month. The treatment was directed by a naturopath, who knew a lot about cancer and conventional treatment and who was very supportive ov conventional treatment. I ran all my supplements and herbs past either my doctor, or when I was having chemo, through the oncology pharmacist. The onc pharmacist advised against one supplement because it contained a raw animal ingredient, not a good idea when immunity would be impaired by chemo, and my thoracic surgeon advised against one Chinese pill because he didn't know what was in it. In both cases I followed advice. I found acupuncture helpful with side effects of chemo, especially nausea, and also great at combating anxiety. The herbs and supplements? I'm not sure whether they helped or not, but today, 15 years after my first cancer, I've had no recurrences and I'm NED on all 3 cancers. With my gyn cancer especially, which had a "dismal prognosis" this is remarkable. I really didn't expect to live so long, (12 years after that Dx) much less be NED all this time. So I'd use these complementary therapies again. Everybody's different in their comfort level with things that are "unproven" in a Western scientific sense and I think each of us needs to make our own decisions about this stuff. I do have some things to suggest for people who want to try complementary therapies of any kind 1. Think of them as "complementary" to your conventional medical treatment, not as "alternative". For example don't abandon your chemo in favor of "green drinks". 2. Avoid anything advertised as a sure cure. There really isn't any. I like to think in terms of what might make me feel better or might be helpful. 3. Beware of anything that seems too far outor is illegal. I know that "too far out" is not an objective criteria, but do use your common sense. 4. Be careful of spending TOO much money on these therapies, Again this is an individual thing. But don't use the rent money. 5. About diet-- Healthy food is great, but some treatment regimens, like chemo or radiation, can make eating a problem (some foodsmay taste/smell awful, problems swallowing, nausea, diarrhea, etc, etc). In that case getting enough calories and fluid needs to be the priority, even if it means not following what might otherwise be your " ideal "diet. If all you can eat is ice cream, do it. If it's long term, see a dietician. So, here's more of my history and opinion than you probably want! Best wishes to your husband, and to you, too. Be sure you take care of yourself, too.

Welcome to the group, Rebecca. I have been on Keytruda for NSCLC for the last 20 months, and also connected to hundreds of immunotherapy patients. I would not hesitate a moment to start treatment. You will probably have seen a lot of the scary stories, as those are the ones people often seek help for. But the vast majorities of us have only minor niggles, and a very good chunk have stable disease or even NED. This isn’t merely anecdotal - the pooled studies show that around 20% get adverse effects that require discontinuation, 20% get no side effects at all, and the remaining arm get some side effects (typically fatigue, rashes or colitis). Personally, I have had some minor joint pains and fatigue. But the long term survival rate is 20-25% - far more than other systemic treatments. My results were almost immediate - my lesions were reduced by 70% within a month, and following radiotherapy, all but a small adrenal lesion is dead. I am about to have surgery for the last bit, after which I will be effectively NED - amazing with a stage 4 diagnosis. More importantly, I have been able to live an almost normal life for the last year. Ultimately only you can make a decision, but if all the scary treatments, Keytruda has some of the best safety records, so don’t take all the scary anecdotes to heart. Cancer treatment is tough, but for most this really is one of the “easier” ones. Best, Rikke

Dear Loving Wife, Sorry to hear about your husband, but I am glad you are able to get some hope from the many positive posts on here. There are so many more options from stage 4 people now, and I have come to think of my own diagnosis as a chronic illness that may flare up and may require ongoing care, but not necessarily as a terminal illness. I was diagnosed 20 months ago at 49, with involvement of chest lymph nodes and metastasis to the adrenal gland. I am on ongoing Keytruda (immunotherapy) and had a round of radiotherapy 14 months ago (which I recommend you ask about as the combo with systemic therapy is quite effective). None of the treatments have been particularly rough, and I am living a quite normal life. My main tumour and all lymph nodes are no longer active. I do have a small growth on my adrenal which may be removed in surgery, but being able to operate at all is a positive as that wasn’t even seen as an option a year back. My main advice at this stage is to allow yourself and your family some time off if possible. Treating stage 4 is a bit of a marathon, and a rather stressful time to get through and will take up a lot of your mental capacity for some time. Hopefully, the treatment will be effective and you will slowly start to come out from under the cloud. All the best, Rikke

Regarding the 'no sugar for cancer patients', I am not sure what basis was ever used for such a claim. A human body normally regulates glucose level in the blood and keeps it at a narrow range (a process called glucose homeostasis where the body uses insulin to lower blood sugar, and glucagon to raises it). While cancer cells have faster metabolism (a fact used in the PET scans we get), eating more sugar does not increase your blood sugar to abnormal levels unless one has other diseases, like Diabetes, affecting sugar regulation. Excess sugar beyond that needed for normal body function is stored in body in form of fat etc or released in urine. Being overweight can cause a host of problems, sure, however, blood goes everywhere and feeds all cells so sugar does not just "feed cancer cells" (it feeds all cells!) and "starving cancer" means starving oneself, just not possible. I hear of research trying to find ways to indeed just starve the cancer cells by changing their metabolism but I am not aware of any clinical usage yet. Certainly we all should eat healthy. Variety and balance is the key though. To me, life without any sugar is just bleak.