Tom Galli

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. 

@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....

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

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

Well I just had a follow up CT scan to see if whatever it is in my right upper lung has grown since the one I had in December and the inconclusive biopsy  that was done at the same time. The results of the scan show that it is indeed growing and it is time to take it out to see just what exactly it is. Surgeon said this morning it’s possible that it is benign but that she feels it is most likely malignant. The good news is she also feels that we have caught it very early. So, I’m optimistic that regardless of what is going in, it’s going to have a good outcome. Surgery is scheduled for May 6th and will involve a stay in the hospital of 1 or 2 nights if all goes well. I’m not looking forward to having this done but will be glad to have it over with so we can move on to whatever is next. As I digest this and get closer to the surgery, I’m sure I’ll have questions for everyone here and any suggestions would be much appreciated!

Congratulations Rikke...what excellent news.
Lou

I feel a need to listen to some Veach boys for sone reason!
Congratulations and get better

@RJN Complete remission? OMG, woman, you need a ticker tape parade. I'm thrilled for you. Here's hoping your summer plans shape up to be glorious!

Yay again, Rikke!

Another “complete remission scan” - 9 months post surgery and 5 months after finishing immunotherapy. Summer can’t come soon enough😀

Tom,
I agree with Rikke.  Don't panic as all critical tests are coming out well.  On the other hand you should still seek answers as to why it's happening and how to reduce it.  Please keep us updated on this.
Lou

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!

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
 

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

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

i was diagnosed stage iv about 18 months ago - lungs, lymph nodes and spine
i've had no radiation
chemo is carboplatin and alimta
imuno is keytruda
after 6-8 months pet scans began to come back clear - carboplatin was discontinued
what amazed me was the treatments had few side effects - never had nausea - did not lose hair - no pain
if they opt for chemo, it might not be as bad as you think - and hopefully, effective 

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

Hi everyone, hope all is well. I been diagnosed with stage 4 lung cancer (egfr 19) and it’s on my bones. I’m writing because I wanted to hear some positive stories or some hope. I’m getting radiation today on my bones.  I have two doctors giving me two similar recommendations except one doc wants me to simultaneously start chemo (platinum) with tagrisso 80 mg.
im 49 years old a little scared and can anyone help me with some comforting positive words. 

my LRLL. Aside from my well-documented challenge with a chylothorax, I've been feeling great. Normal activity results in no SOB and aside from the occasional twinge, there is no pain. I can walk stairs without SOB as well. Iin fact, I try to take the stairs (in lieu of the elevator) whenever I can. Yard work (including mowing) is no more difficult than before this experience.
I've had one scan since, which was good. Next scan is in June, hopefully with the same results!
 
I hope this helps anyone who is facing the same challenges we all are in this group.

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? 

NYC Guy,
Welcome here.
The metastatic concern level increases markedly when pulmonary nodules change size or shape. At this juncture, one's only choice is how to biopsy. Your doctors are suggesting a surgical biopsy but there is another alternative--a needle biopsy. This avoids surgery and a 9mm nodule provides a large enough target to obtain a valid tissue sample for the pathologist's histological (microscope) examination. The PET scan may help you choose because if the scan shows high standard uptake value (SUV) results, malignancy can be presumed. But sometimes small nodules don't give reliable results. Here is information about the PET scan and SUV. 
If the PET scan does not validate malignancy, I'd explore a needle biopsy before agreeing to surgery.
Stay the course.
Tom

Arisa,
Welcome here!
Before I comment on options, I want to complement you and your mom on diagnostics tracking her nodule. That is, in all cases, the right thing to do.
Mom's TB complicates an answer about options. TB can often produce lung nodules and even these can change (or not) year over year. In fact, your mom's 1mm progression is so small it might be lost in the accuracy range of the CT equipment. Consider two things--7mm is the size of a typical camera on a modern cell phone and this makes it a hard target for successful needle biopsy (to Lou's point), and small nodules if metastatic often do reliably produce SUV uptake so a PET scan can be problematic. 
I'd ask a thoracic surgeon, interventional pulmonologist, or interventional radiologist about the possibility of a successful guided transthoracic needle biopsy for a definitive diagnosis. Here is some information about needle biopsies. And here is information about pulmonary nodules. If her practitioners decline to perform a biopsy, keep on tracking things with a CT.
One more thing. I've survived 18 years after diagnosis and my yearly monitoring scans still show nodules. I call them my "phantom" nodules because they appear and disappear randomly. To retain my sanity, I use the diagnosing radiologists report about location and chart them on a spreadsheet. So far, nothing new. Just a waxing and waning of nodules scan after scan. Why? Who knows!
Stay the course.
Tom

NYC Guy,
Welcome here.
The metastatic concern level increases markedly when pulmonary nodules change size or shape. At this juncture, one's only choice is how to biopsy. Your doctors are suggesting a surgical biopsy but there is another alternative--a needle biopsy. This avoids surgery and a 9mm nodule provides a large enough target to obtain a valid tissue sample for the pathologist's histological (microscope) examination. The PET scan may help you choose because if the scan shows high standard uptake value (SUV) results, malignancy can be presumed. But sometimes small nodules don't give reliable results. Here is information about the PET scan and SUV. 
If the PET scan does not validate malignancy, I'd explore a needle biopsy before agreeing to surgery.
Stay the course.
Tom

I do plan on sticking around, Lou!  I'm a big fan of patient health forums.  I learned so much initially about my two autoimmune conditions and then joined other related and unrelated sites to give back at a later point.  As I said, I'm not actually diagnosed with lung cancer (yet) though local onc believes I have it.  Hoping July scan offers clarity - So whether as a patient or caregiver, given family cancer and deaths, I'm passionate about any kind of cancer.  This includes lung cancer forums more recently though long-term when it comes to my employment.....