Tom Galli

Cara,
Since you are the “reader type” here is some information on treatment options.  It is broad, but you’ll see good information about surgery there.  The “Surgery” section under “Treatment Options” can be found here.  One line from the criteria for a surgical approach found on the page is the following;
"When surgery is an option in a patient with non-small cell lung cancer (NSCLC), it is the main treatment because it provides the best chance for a cure."
Whatever the outcome I pray for you both to get a curative result.
Lou

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. 

@JuneK That radiation necrosis around a treated brain lesion is a pain. But it sounds like the lesion itself has been fried? Hang in. Steroids can be awful, but they are miraculous if you need them. 

Hi and welcome.  Sorry you had trouble finding us but glad you did.  Your short history shows remission since 3/21 and that is good news.  Would you like to share a bit more about yourself and let us know how we can help you?

Lou

We were on Hawaii island at the same time you wrote this. I felt so grateful and enjoyed it so much. I hope you do too. 

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

Welcome aboard, @allicat1214. Sorry you need to be here, but it's a great place to land. I'm glad to hear how confident you are about your ability to advocate for yourself. I'll join in on the chorus supporting a biopsy down the road. Tissue biopsy is considered the gold standard, although liquid (blood) biopsies are often a place docs start if they want a relatively faster result (days instead of weeks.) 
Totally agree with the value of the NCCN site. 
Good luck, and keep us posted.

Thank you for your update.  We have all fingers crossed that the outcome is a good one but whatever happens we’ll be here for whatever support we can give (which is a lot).
Lou

An update:  my husband apparently wanted to give the first (nearby) doctor a chance, so he set up a second biopsy which he had today.
The doc said he'd try to be more aggressive, so we asked more questions about pneumothorax.  The pre-biopsy CT scan showed no growth or changes in the nodule since 12/7, so that's good.
In reviewing the documents generated from today's procedure, I see that he added a "cryobiopsy" of the nodule (to the needle and forceps biopsies and the lavage), I guess in hopes of getting better/more samples.    He did not (it appears) re-sample the lymph nodes and I forgot to ask if they looked okay, but I guess they did.
No collapsed lung, so now we wait and hope he was aggressive enough and we can see what, exactly, we're trying to determine treatment for.

I'm moving on from the original post in the "introduction" category:
We had a second opinion via televisit with an interventional pulmonologist at a semi-near teaching hospital, who received all my husband's records before we spoke, and who then took his "case" before their tumor board.  The advice of the tumor board was to have a second biopsy/EBUS.  My husband has decided, so that we don't have to travel, to go back to the pulmonologist who did the original EBUS and see if he'll try again to get enough tissue for a definitive diagnosis.
I'm just interested to hear from anyone else who has chosen to try again for a "better" biopsy.  Does it make sense to use the same doctor?  Part of me thinks - if he wasn't good enough to get enough the first time (or it just wasn't possible), is there any point?  And what are the chances that Medicare is going to cover this?
I asked my husband what he's going to do if we have the same, undetermined result.  He thinks then that he WILL move ahead to radiology.  I'm then going to worry over whether we should pursue "Cyberknife" surgery, or if SBRT is enough of a "gold standard" that that will be "good enough."
I'm trying to do the reading that others have suggested, so far.  It's overwhelming and hard to understand, but I'm trying!

Hi Rikke! Great idea! Let me look into this and see what we can do. Thank you for the wonderful idea. Have a great day!

Hello RJN
I had the option 6 months ago to go off the immunotherapy or stay on it. I chose to stay on the Kaytruda as it has been helping me to date. I pray it continues as I have no intentions of dieing anytime soon. My Oncologist has a Stage 4 patient that Is on year 6 of survival. That patient and now you are clear examples of the hope and goals I hold on to. Thanks so much for your encouragement and I wish you well on your journey. It is relieving to be able to communicate with someone who really understands what I am expressing.

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.

I'm happy to report I am doing much better. @TJM thank you for your input regarding Cymbalta! I have been taking the Cymbalta for one week now and it has really helped my pain. Some of the relief may be due to the reduced dosage, and also just to the passage of time as my body adjusts to the drug. But I do think the Cymbalta helped because the pain reduced markedly after only 3 days taking it. Today I can say I have no noticeable pain anywhere in my body! Amazing what that does for your attitude. @TJM I had not even thought about the fact that Cymbalta can help with anxiety. That is one "side effect" I welcome, ha ha! I honestly can't tell yet if it has made a difference. My anxiety tends to fall away when things start looking up and gets bad again when I receive bad news, so it remains to be seen if the Cymbalta will help with future struggles. I'm happy to have all the help I can get in that regard though. 
I had labs yesterday and my liver numbers were still perfect. Because of that and my lack of pain, we decided I should increase my dosage of the Repotrectinib starting today. I am optimistic that I will be able to tolerate it now.
In other news, I had a brain MRI this week. The good news is the 1 millimeter lesion that first appeared on my last MRI has completely disappeared! They believe this is most likely the result of the Repotrectinib even though I was on a reduced dose. That is very encouraging to me - maybe it means this drug will help to reduce the progression in my lung. I view it as a hopeful sign! 
The bad news is one of my previous brain lesions that was treated with gamma knife back in September has increased in size with some surrounding swelling - most likely radiation necrosis. I've heard some bad things about that so it scares me a little bit. My radiation oncologist said since I've had NO symptoms not to worry about it for now - we will just keep an eye on it. If I DO start to have symptoms she says it can be treated with steroids to help it heal faster & reduce any swelling. She said they often resolve on their own so that's what I'm hoping for.
Thanks again for all your well-wishes and encouragement. I feel much better about my TKI drug. I'm SO encouraged that my liver numbers are looking good and my pain is now under control. Praying that continues and that I get a good result from the Repotrectinib.
 

Hi Minh,   Im sorry you've had so many  challenges! You're really hanging in there. Good for you!
I have a suggestion for the swallowing issue. Have you seen a speech pathologist? Many people don't know that speech paths deal with swallowing issues as well as speech. It makes sense since the muscles involved in speech and swallowing and coordinating those with breathing are the same.  I've worked with a  number of people with disabilities that caused swallowing problem with choking risks and helped them get set up with a speech pathologist for help with this. 
You could ask your doctor for a referral.
keep hanging in there.

Thank you all for suggestions.
I have tried everything you have recommended. I also talked to dietician multiple times for help. My main problem is shortness of breath that leads to other problems such as eating, swallowing, potential choking, and fatigue. They told me to learn belly breathing which I tried and it doesn’t help. When I eat I have to belly breath and swallow at the same time which can potentially cause choking. I have to swallow quickly and return to breathing. It very difficult for me to eat with shortness of breath. Usually I get tired quickly when eating meal. So I tend to hurry up and eat as fast as I can before I have to take a 15 minute break. One meal can take up 1 1/2 hour. 
Are there anyone out there that have same problem like me? Shortness of breath that causes eating problem. What should I do? Doctors keep telling to learn deep belly breathing which I tried and did not help me at all. Help!

I was diagnosed with 4th stage cancer metastisized at size 7 with 2 blood clots all in my left lung and lymph nodes. I was loaded with fluid at time of diagnosing believing I had pneumonia and learning my real diagnosis. I went into emergency surgury for a perichondrial window to keep the fluid building up around my heart and had over 4 cups of liquid drained out of my back that was surrounding my lungs. This was a little over 2 years ago. My oncologist refused to give me a time that my life may expire and for that I thank him everyday. A few months ago he told me my time expected was 3 to 6 months and that others he had diagnosed with 4th stage Lung cancer had passed long ago and I am considered ever so lucky. Before I left the hospital 2 years ago I placed my life in God's hands and refused to google lung cancer. I did not want Google telling me how and what I needed to feel and fill my head with the fear of what to expect. I chose treatment and continue to attend every 3 weeks. I tell myself that I will live my life until God decides otherwise. I prepared my will, moved to a smaller house and have spent these years making family memories and helping them prepare for my passing by letting them know that I am not afraid. They will move forward when I pass. I was forced to come to terms with reality the day I was diagnosed by myself in 2 separate hospitals due to Covid. All of this made me see that I wanted to move forward having a quality of life not a life of fear.  Move forward with life in a positive manner.i believe it will help keep you alive. Stay strongl and off of Google.

Karen,
Welcome here.
If your question about fluid removal involves draining a pleural effusion, then yes I’ve experienced it. I had a local anesthetic and a long needle was used to withdraw the fluid from the pleural space. My discomfort breathing was immediately relieved. I admit, I was concerned when I saw the rather large needle, but I didn’t feel a thing. Does the fluid come back? Sometimes. The fluid results because the lungs are experiencing irritation. Judy reports her Tagrisso stopped the fluid and mine never returned when I started chemo. I do hope you have but one drain session and results improve with Tagrisso.
Stay the course. 
Tom

Iman,
Welcome here.
Some do share portions of scan reports and less often biopsy reports. The language of scans is complicated; biopsy results are straightforward. The biopsy will report if the node contains metastatic cancer cells or benign cells. Further, if metastatic cells are present, the biopsy will identify the type of cells. This examination is performed using a microscope. The pathologist can see the difference between the size and shape of cells and if cancer can classify the cells as small cell, large cell or non small cell. 
You mentioned staging. Staging speaks to where nodules are in the body. The article Lou suggests contains a complete discussion of staging. Staging is only important to determine if the nodule can be surgically treated or not. Stage I, II, and some forms of III can be treated by surgery. Stage IV cannot.
Stay the course.
Tom

@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

Hi Angelina. I also am a SCLC patient and did basically the same treatment as you except the preventive brain radiation. I did not develop neuropathy so really  have no advice. My mother had it in her hands and feet and was on lyrica which helped a little. I too have insomnia and have had a sleep study which showed mild sleep apnea. I am going to get a cpap machine and will see if that helps. I will pray for good results with your pet scan. Sorry I’m not much help. You have come to the right place thou. There are awesome people on this forum and I’m sure someone will be able to give you advice. Keep us informed.
Pam

Hello, I'm from Serbia. In July 2023 I was diagnosed with SCLC. We did 4 cycles of chemotherapy, 30x lung radiation and 10x preventive brain radiation. The tumor was reduced from 6.5cmx6cm to 1.5cm. But we haven't done PETscans yet. I hope for a good result when I do it. My troubles now are neuropathy. Do you have any advice. Arms, legs pain and tingling terrible, weakness, weakness, no appetite. Insomnia....

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

It may not be so uncommon that separate scans produce some differing images.  It’s good to hear that the nodules are not growing or presently considered malignant.  Having said that there may be other tests they can run.  For example, a PET Scan could show up malignancy in cells within the nodules or not show anything (good news).  But at the end of the day a biopsy is considered the gold standard for determining the malignancy or non-malignancy of a growth.  Sixty percent of nodules are benign but as a former cancer patient (like me; colon 2010, lung 2019) I would always error on the side of more data and confirmed testing.
Lou

Reduction and stable are two words that I’ve come to value very highly.  Keep the good news coming.
Lou