LouT

Hello, I have had Lung nodules going on 8 years since I had bowel surgery and when coming out of surgery had to be kept on a ventilator for 2 weeks due to raspatory failure (30 years of smoking) . I have COPD consisting of emphysema, chronic bronchitis and asthma. I quit smoking when in the hospital in 2016 with the above mentioned surgery.  I had 2 small nodules due to scar tissue that have been stable in size and shape. in a recent CT scan (12-2023) another nodule showed and was solid and spiculated. I since have had two other CT scans and it has tripled in size in 3 months to 7.7mm. I have a 4th  CT scan on the 1st of April as they want it to be 8mm before they decide to biopsy or next course of action. At this point its like a roller coaster waiting then thinking you are getting somewhere just to go up another hill and I  just want to level out and get on with what needs to be done. 
 

Karen,
First of all I'm thrilled to hear the good news on your exam.  I'm also very impressed with the information you shared regarding stress and its impact on our health.  It's a great topic and your points were spot on.
Lou

Thanks, @LouT. There’s so much cool stuff to learn, isn’t there? 

It's been quiet here lately. I just wanted to share that my latest chest CT is stable, with no sign of nodules or new metastases. Yay Tagrisso!
I knew it would be a boring oncologist follow-up visit, so I planned to talk about stress and its impact on recurrence. I was volunteering in a high-stress environment, with traumatized kids. The doc told me that many of her patients who incorporated dietary changes, took up meditation, and exercised also did as much as they could to avoid stress, even going as far as changing jobs. She said the most important thing was to focus on doing what brings joy. In her eyes, my volunteer work seemed dark and difficult. She didn't tell me what to do, but she repeated the joy thing about 8 million times. While I regretfully stopped the volunteer job, I've found I'm really enjoying focusing on joy. 
I have done a little research on PTS (post-traumatic stress) and cancer survivors. One study reports on a a cellular mechanism that, under the right circumstances, can trigger a cascade effect that may result in reactivation of cancer cells. (Researchers emphasized this was one of what they think may be multiple pathways.)  Note that PTS is not the same thing as PTSD. And, the news about PTS is not all bad. According to a psycho-oncology report in Psychiatric Times, "post-cancer trauma symptoms may coexist with finding meaning, strengthened relationships, enhanced spirituality, bolstered sense of personal strength, and clearer life priorities." 
Hope you are all well.
 
 

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

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

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

Super wonderful news.  Keep on going.
Lou

Congratulations TJM…I hope you have many more NED’s to come.
Lou

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 

Wonderful news, Tom!  Keep us updated on your optimistism!

Great news Tom. Stay the course!
Tom

Wonderful news. I know how you feel. For a while I was thinking that whatever happens, at least I don’t have to be frugal, as I am unlikely to live to a ripe old age. Odds of that are still low (esp given my treatment induced comorbidities), but not beyond the pale, so now I can’t just blow my pension fund as I had planned 😜😜. But in all seriousness, each NED I see posted makes me jump for joy!

That is great news Tom…yes we have to look more towards the future and what to do with our time….enjoy!
Pam

Very good news indeed.

My last CT scan came back clean again! This marks exactly 4 years since my RLL VATs! The spot on my abdomen I was a bit concerned about was begnin and a full body check has me clear of any suspicious lesions (had a basil cell lesion removed 2 years ago).  Finally, my unintentional weight loss stabilized...right at my normal pre-cancer weight!
With some honest reflection I realize I currently feel the best I have felt since this whole thing began. 
Time to seriously contemplate living a long time. I haven't allowed myself that luxary since the original prognosis. If I look at the statistics for one flavor of tumor (Carcinoid which mine was) I look golden (less than 5% chance of recurrence). But if you look at a NET Large cell NSCLC (which mine also was) the odds of recurrence  much higher (80% with minimal data).
I shall now use the optimistic (and more likely) scenario to inform my future decisions.
Very interesting mental position for me. I will live a lot longer than I expected I would. When I told my wife I had changed my outlook and thought I might be around awhile all she said was "I knew that long ago". Time for me to decide what the heck I'm going to do with all this potential "bonus" time! A delimma I hope to enjoy fixing!
Tom

@TJM Thank you. It isn’t just you. I spoke to my two lung oncologists, and they are saying that lung cancer has changed a lot in the last 5 years, and I can tell that their attitude has changed tremendously even since my diagnosis 2.5 years ago. With immuno and targeted treatments, a better understanding of options for oligometastatic cancer etc they now have so many more strings to their bow. We are still at the Wild West end of things, but results speak for themselves, even if not yet reflected in official statistics!

Congratulations!
I love good scans! Might just be me, but it sure seems like there are more NEDs than a few years ago?

Congratulations! I have just gotten my last scan results and also NED!!!!

That is so awesome Jill! Congratulations!

I am NED!!!

Sorry you find yourself with this diagnosis.  Nearly 4 years ago I was diagnosed with stage IV NSCLC spread to my brain neck liver and skin.   Because of the skin Mets I was not given long even if treatments worked. I may be a tad Slower and a little worse for wear but I'm here. Living life and enjoying myself as before.  A few extra appointments throughout the year nothing that interferes that much.
 
You can read some of my story here. 
I have not finished catching up. But it will give you a good idea.
This is by far from a death sentence .  The goal is to manage it until the next treatment or cure becomes available.

Rikki,
You just made my morning.  So glad to hear that your scans went well.  I’ve not had a scan where I didn’t have some level of scanziety, but that is me.  Keep on going strong and enjoying life.
Lou

Letsdothisletsroll,
I haven't taken any form of chemotherapy, but I did find the following on the Imfinzi website in the list of side effects:

"Hormone gland problems: headaches that will not go away or unusual headaches; eye sensitivity to light; eye problems; rapid heartbeat; increased sweating; extreme tiredness; weight gain or weight loss; feeling more hungry or thirsty than usual; urinating more often than usual; hair loss; feeling cold; constipation; your voice gets deeper; dizziness or fainting; and changes in mood or behavior, such as decreased sex drive, irritability, or forgetfulness"
I hope this helps.
Lou 

Letsdothisletsroll,
I haven't taken any form of chemotherapy, but I did find the following on the Imfinzi website in the list of side effects:

"Hormone gland problems: headaches that will not go away or unusual headaches; eye sensitivity to light; eye problems; rapid heartbeat; increased sweating; extreme tiredness; weight gain or weight loss; feeling more hungry or thirsty than usual; urinating more often than usual; hair loss; feeling cold; constipation; your voice gets deeper; dizziness or fainting; and changes in mood or behavior, such as decreased sex drive, irritability, or forgetfulness"
I hope this helps.
Lou