LouT

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 posted my scan waa clear, that the lesion I was concerned about was nothing and my weight loss stabilized. To top it off I actually feel pretty decent for my new normal 
Then last week I noticed my right foot was swollen up pretty good. Not the left. Concerned my wife enough to call the advice nurse. They advised a trip to the ER. I waited till the next day and went into urgent care. Results were:
CBC and other tests fantastic. Ultra sound showed no DVT. X ray nrgative.
Then I went home. My foot is still swollen. Doc only gave me vague instructions. FWIW, I did have a PE several years ago and am on blood thinners.
I have a note into my primary but do not have high hopes. Anyone else experience Endema (sp) so long after treatment (3.5 years) and totally out of the blue?
I guess I cannot accept exceptionally good results without a fight!
Tom
 

I came across a column a few days ago from a self-proscribed hypochondriac. Turns out it was someone with a history of hodgkin’s. I was thinking that it really is a side-effects of cancer recovery. Even if all goes to plan, you will always be extra wary of any physical symptoms. I get a bit worried if I have the tiniest cough. Just spoke to someone who is convinced her dodgy hip is bone metastasis, rather than the logical conclusion that carrying around her toddler grandkids might be to blame. But better safe than sorry - so good to get it checked. And when that is done, celebrate your clear scan again!

@Scruboak, your simple statement, "I struggle with this," spoke volumes to me. And, I cracked up because letting go of my agenda is not one of my strong points. 🤪

I may be wrong but I am going to go out on a limb and predict that you will feel much better cutting that vile thing out! I did!
Glad you caught it early. You got this

@Blossomsmom May 6th probably can't come soon enough. I'll be thinking of you as the date approaches.

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16  Don't quit before the miracle....

Edivebuddy, thank you for your reply!  Yes, the surgeon said they will do the rapid on site evaluation. Sounded like the results of that will dictate how much of my lung she’ll remove. Guess I’ll find that out when I wake up.
I will definitely do what they tell me to do. I really want to be back on my feet as quickly as reasonably possible.

Ask if they will be performing a Rapid On Site Evaluation.   They look at the tissue right there in the operating room.  (Some have separate rooms but close)   
You've already started the rehab and it is going to go a long way towards your recovery.  Follow their plan and move as much as possible.   

My surgery was done robotic VATS (Visually Assisted Thoracic Surgery) so it was more endoscopic.  In my case I was told I was under for about 6 hours.  I know of others who have been under less and more.  It will really depend on what they find and what is being excised, and anything else that they want to check out during the procedure.  The good news is I wasn't aware of any of it.  

After my surgery I was able to raise my arms, but my right-side (the side of my surgery) was sore for a while.  In the beginning I'd get up, walk around the house for 10 minutes and then sleep for an hour.  Over time the walks became longer and the sleep shorter.  That will depend on how you prepare yourself for the surgery.  I normally do 5 miles a day and then weights (not a body builder, just trying to keep everything working) but it took me a few weeks to get my first 10k steps (~1 mile).  My advice is; take care of yourself before the surgery (food, sleep, and moving), and after; use the spirometer, move as much as possible (don't overdo it), eat healthy and get good rest.  Over time you'll be surprised quickly you'll recover strength.  Right after surgery I spent time being breathless after any exertion but over time that improved so don't be frightened by it unless it is serious then speak with your doctor.

Feel free to ask any additional questions you've got friends here and you won't go through this alone.
Lou

@Karen_L I understand what you’re saying. Joy can be elusive in a way that happiness is not. If joy is the fruit of the Spirit I can only hope to experience it when I let go of my own agenda. I struggle with this.

Thank you Lou! My journey is starting out just like yours did and I hope to have the same good results you’ve had. I will definitely look at the blog and appreciate the recommendation. 
The one question neither my husband or I thought to ask is, how long does surgery take? I know it probably depends on what they do once they get into the lung but are we talking an hour, 3 hours or ?
Just read the blog. Thank you, it’s very helpful! One (other) question. Are you able to lift your arms over your head after surgery? The answer will dictate what I take to the hospital to wear home.

Thanks for the update on your scans.  I'm sorry to hear about the ongoing growth, but it's not unusual.  My nodule was discovered in Jan. '19 and was so small they waited three months to see what might happen.  Three months later it had grown but after an inconclusive PET Scan and failed CT-guided Biopsy they opted for surgery.  Prior to the operation I asked the surgeon what the chance was that it was not malignant and he told me "about 10%".  He went on to explain that while most nodules are benign the malignant ones are more apt to grow.  I had my surgery in May '19 and it resulted in a lower-right lobectomy.  Since that time I've been NED and leading a full life.  My prayers are that if it is malignant you'll have the same kind of outcome.
In the meantime you may want to take a look at a blog I wrote titles "Thoracic Surgery Tips & Tricks".  It will cover pre-surgery prep, the hospital stay, and post-surgery recovery.  In the meantime please ask any questions that you may have.
Lou

Hello. I had a 1.2 cm round nodule in my RLL discovered in 2006. Had annual scans for 5 years and then forgot about it.
Fast forward to 2020 (early) and that nodule had grown to the size of a lime. Upon reviewing my past surveillance scans I found that it had indeed been growing very slowly, but growing. No alarms were set off. Also the SUV uptake wasn't high but wasn't  nothing at 1.8
My message is to not forget about it if you go the surveillance route. I ended up with 3 nodes involved and staged 3. Had a RLL VATs, chemo and radiation. Turned out to be Large cell NET (rare for LC) so the stats were scarce. They treated it as if it was small cell. I feel lucky to have had surgery because if it was known to be large cell protocol for surgery is sketchy.
I would have it removed. I wish I had in 2006 (was given the option but doc suggesr a PET scan instead). Suffice it to say I was not a happy camper and made them very aware of that fact.
Best of luck. Probably ok to go either way...if you keep cognizant it is there.
 

These are tough decisions!  It is important whatever you decide you are comfortable with it... wishing you the best as you decide.  

NYC Guy,
You are in the small nodule, unreliable PET result zone.
Now you have two choices: a CT scan 2 to 3 months from now to evaluate change in size and or shape, or surgery to obtain a biopsy. Depending on where the nodule is, anatomically, the surgeon may remove the entire lower lobe.
I have no suggestion for how you might choose.
Stay the course.
Tom

Anthony,
Sorry to hear about your cancer, but glad you found us.  There are many others here like eDiveBuddy, who were diagnosed with advanced LC (lung cancer) and years later they are still here to share their story.  The truth is LC is not the automatic death sentence it once was.  Yes it is still the deadliest form of cancer and highly recurrent, but more work (curative, and control-based).  My LC was caught at Stage 1 and was treated surgically.  But there are folks here with many and varied diagnosis and journeys.  In the meantime I’d ike to share a blog with you that was written by one of our own members.  It is based on his receiving a diagnosis of Stage 3 over 20 years ago.  That Stage 3 then became Stage 4 and he went through many treatments and recurrences and only a couple of years ago he was pronounced cured.  He compiled a list of “10 Steps to Surviving Lung Cancer; by a Survivor” and it can be found here.  In addition, now is the time to learn as much as you can about your disease, diagnosis, and treatment.  We have a section called “Lung Cancer 101” and that is found on this page.  
So please keep coming back.  Ask questions, read other’s posts and learn all you can so you can manage this journey in a much better way.  I pray you’ll be on the site for a long time to come.
Lou

Unfortunately a PET sucks at seeing early cancers.   AIS and MIA lung cancers normally show way less than an SUV of 2 . I'd continue to follow the doctor's advise. Continued good luck to you. AIS and MIA Lung cancers have a 100% 5 year survival.  AIS. Has a 100% 10 year survival if treated.

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.

Pet scan came back with:: 
right lower lobe/lung base nodule with no appreciable uptake may represent an adenocarcinoma spectrum nodule. Notably, metabolic activity of small pulmonary lesions in this region may not be well evaluated due to diaphragmatic motion artifacts. 
 
I asked what the Dr said and they said they still advise removal and biopsy. Does this sound right from this indication above off my PET? 

Soooo happy for you, RJN!!!  Thanks for sharing.

I'm a little late to the party though congrats to both of you (Jill and TJM)!!!

Anthony,
Sorry to hear about your cancer, but glad you found us.  There are many others here like eDiveBuddy, who were diagnosed with advanced LC (lung cancer) and years later they are still here to share their story.  The truth is LC is not the automatic death sentence it once was.  Yes it is still the deadliest form of cancer and highly recurrent, but more work (curative, and control-based).  My LC was caught at Stage 1 and was treated surgically.  But there are folks here with many and varied diagnosis and journeys.  In the meantime I’d ike to share a blog with you that was written by one of our own members.  It is based on his receiving a diagnosis of Stage 3 over 20 years ago.  That Stage 3 then became Stage 4 and he went through many treatments and recurrences and only a couple of years ago he was pronounced cured.  He compiled a list of “10 Steps to Surviving Lung Cancer; by a Survivor” and it can be found here.  In addition, now is the time to learn as much as you can about your disease, diagnosis, and treatment.  We have a section called “Lung Cancer 101” and that is found on this page.  
So please keep coming back.  Ask questions, read other’s posts and learn all you can so you can manage this journey in a much better way.  I pray you’ll be on the site for a long time to come.
Lou

Dina,
I'm so glad to hear that your surgery went well and that your recovery is going well.  The spasms and pains are truly a pain in the butt.  Some of that really has to do with muscles and nerves healing after the surgery.  You may even have some ongoing nerve pain (itching and burning) at the sites of incisions.  For those I recommend asking your doctor for Gabapentin.  On the other side the more you can use the spirometer that more you do it the more benefits you'll see.  Doing the exercises multiple times a day will help; clear your lungs for better breathing, strengthen your muscles to reduce spasms and increase blood flow for healing.  Also move as much as you can comfortably do.  I found that the more I moved (uncomfortable as it was) the better I felt.  Try to keep your pain levels down as well.  When you have less pain you're more apt to move and regain strength and flexibility.  Please continue to keep us updated and I'm very happy you are doing well.
Lou

Welcome to our forums.  I'm sorry you need to be here but glad you found us.  We're a community made up of LC (Lung Cancer) survivors and some caregivers.  The stages, types, and treatments we've experienced are "all over the map" so you'll be able to ask most any question and find people with firsthand experience.  Like you most everyone in my family died of cancer.  My dad, mom, most of my uncles and aunts on my mother's side, and a step-sister, so like you I understand the situations reasonably well..  What I can tell you is that when my mom died from LC we didn't have many of the treatments and trials available today.  So you have the experiential knowledge but I think it's also good to learn all you can in an updated manner so I'm going to share some different information with you.
We have a section called "Lung Cancer 101".  It covers causes, diagnosis, treatments and all aspects of Lung Cancer it can be found here. An important blog written by one of our senior member is titled "10 Steps to Surviving Lung Cancer; from a Survivor" it is on this page.  This member was originally diagnosed at Stage 3 then Stage 4 and after 20 years of treatment has been declared "cured". A tip for you; stay away from Dr. Google.  Outcome statistics found there are normally over a 5-year period and don't accurately reflect new treatments available.  Neither do they consider the individuality of our situations.  You're always better sticking with your treatment team for that information. Please stick around, update us as events unfold and ask any questions you may have.  We'll be here to support you.
Lou