Tom Galli

Kamoto,
I have many "psychosomatic remembrances of the toughest time" in my life, but when these rise to the level of actual symptoms, I get out of my head and into a doctor's office. You can do this!
Stay the course.
Tom

Kamoto,
I have many "psychosomatic remembrances of the toughest time" in my life, but when these rise to the level of actual symptoms, I get out of my head and into a doctor's office. You can do this!
Stay the course.
Tom

I'm new and was a caregiver for my beloved 82 yr old mom. She was married but they weren't happy and were talking divorce. He, in general seemed to be incapable of emotion and affection although when they met in the early 1990's, he treated her well, showed affection and they enjoyed being together. She and her husband (he is 4 years older) lived 90 minutes away. Mom smoked for many years, since age 17. 
In March of 2011 she was diagnosed with non small cell lung cancer. She'd had a bad upper respiratory infection that was lingering. They did chest xrays and found a spot on her left lung. Sent her to a pulmonologist not long after. She had a bronchoscopy done which resulted in her official diagnosis of NSCLC, Stage 1.  He told us she was fortunate it was discovered early -- we obviously agreed! She was referred to a surgeon who was excellent. In June of that same year (2011) they removed one lobe of her left lung and a part of the second lobe as well. They said she should quit smoking for surgery and STAY QUIT. She quit for surgery and was in the hospital about 7 days because of what they call "sundown psychosis" where she began hallucinating, having some paranoia etc. They kept her a bit longer to schedule a scan to make sure it wasn't worse than originally thought and perhaps had spread to the brain. It hadn't, thankfully! However about 10 days after getting out, she began smoking again. I and my family have experienced people being insensitive in our current situation because although mom did cut down, she still smoked. NONE of us approved of that and she actually agreed that it wasn't smart and she was taking a huge risk. But it didn't make a difference unfortunately. The doctor recommended frequent check ups which she did religiously, and regular PET scans which she also did without fail. Her pulmonologist said she didn't need chemo or radiation. That made me a little nervous but her scans kept coming back clean. (Her cancer was found to be squamous cell carcinoma.) After 5 years of clean scans she was declared all clear but still had regular check ups for breathing tests, and her physical. 
 She had several other health problems as she got older including: high blood pressure, COPD, cholesterol was somewhat elevated and she had mild emphysema and Irritable Bowel Syndrome. Mom also developed anxiety years back but that seemed to worsen as she aged. Even during her first bout of lung cancer, she was terrified of hospitals and being sick and also had developed major issues around abandonment. We think it stemmed from when she was younger and her dad abandoned the family but also, her mom who she was really close to, was hospitalized "for tests" back years ago. Shortly before that mom had taken me and we moved from NJ to Maine with her 2nd husband. Nana (mom's mother) died in hospital --of cancer. Ever since then, she couldn't handle being alone in the hospital and myself and my sister would take turns staying with her. Mom's current husband also stayed a few nights this round. 
 Mom was experiencing some symptoms that initially seemed random this past spring and into early July after going 12 years cancer free. We thought she had that beat after all this time and continuing regular check ups. I will elaborate on more current information about circumstances some other time but mom was admitted to the hospital on July 5th. They found fluid on her remaining right lung as well as what they described as a "mass" and a few other questionable areas including a 6.3 cm x 4 cm subcarinal lymph node. She was having difficulty maintaining her oxygen level so they put her on oxygen. I stayed with her some nights and most days. My sis had to work and has a family so she did what she could as did mom's husband. There were several doctors and hospitalists involved in mom's care. She was actually in pretty decent spirits despite her fear, talking and joking at times like normal. Several days in, the doctor removed almost a liter of fluid from her remaining lung and said they were sending it to pathology. They also did another CT scan and again told us that the mass looked highly suspicious for cancer. But no one would confirm for sure. Mom was very weak. They recommended sending her to rehab to strengthen her. Results from pathology could take a week. Mom was very clear with them that if it was cancer she wanted them to "throw everything you've got at it. I like my life and even though I'm older I want more time with my kids, grandkids and 2 great grands." The doctor said "So for example, if for some reason you were to stop breathing, you'd want us to do CPR and try to revive you despite any risk of cracked ribs?" Mom said yes. 
Mom died in hospice in the early morning hours of July 25th. She'd been there not even 2 full days. We are heartbroken!! 
 

Kamoto,
Symptoms like this need to be checked out.  Please contact your oncologist and explain what you are experiencing.
Lou

Hi All.   Winter has hit in Montana.  But I’m experiencing something odd.  I’m having morning dry heaves like I had post chemo.  Since April of 2023 I’ve been fine, gaining weight enjoying the summer, then wham, it’s like I’m having chemo again.   My daughter who is an RN says it’s likely PTSD.  Anyone else have this ten months after the end of chemo?   I have a scan in a few weeks, so I’ll tell Doc about this new issue, but wondering if others have psychosomatic remembrances of the toughest time in their lives.  Hope everyone is well.  

Thanks Lou and Scruboak tomorrow I meet with surgeon to find out stage and if any lymph node involvement. Thanks for the list of questions. I believe biomakers were ordered.  It's very positive to hear someone else has this type of tumor because the doctors made it seem so rare and I'm happy scruboak you have had 3 years of NED.  My recovery has been hard the first 6 days were great not much pain and I thought I was one of the lucky ones. On day 7 could not move left arm chest and rib cage were having spasms and sharp shooting pains. Can't lay down in bed because I can't get up without pain. I'm hoping this is not going to last much longer.  So glad I found this forum. Julie

Crossing fingers. I am waiting for my results as well…

Fingers crossed for good scans 

After all the fun I've had with the aftermath of my RLL (https://forums.lungevity.org/topic/52143-probable-chylothorax/), I'm actually kinda anxious about the results of my upcoming CT
Fingers crossed....

I also agree if it is something remember early detection is key. We are here for you
Chuck

I agree with those who advise against waiting. 2.6 centimeters is not huge, but it's not a tiny nodule either.  I had a 3 month "wait and see" but my nodule was under 1 cm at that time. I think asking for an opinion from a pulmonologist is a good idea.

Welcome, Sue!
Don't worry about corrections. Anyone who suffers from this disease gets an automatic bye on mistakes. Lung cancer is complicated.
You are right. Outsiders don't understand our disease. We don't display symptoms until late-stage disease and then we're out of circulation in an ICU or home hospice.
Come February, good Lord willing, I'll be fortunate to celebrate my twentieth year since diagnosis. My treatment mayhem is over, but memories are carved deep in my soul. Like all of us, I am one scan away from bad news. Having said that, my calendar reminds me of an October 27 annual CT scan prior to my visit to my medical oncologist. Hopefully, the scan will show no evidence of disease (NED) and I can enjoy the Fall holiday festivities.
Stay the course.
Tom

Blossomsmom,
Good to hear from you again but sad you might need to join us in survivor mode.
One of the upsides of having a pay-for-service health system is direct access to specialty physicians. Exercise that right and see a pulmonologist, medical oncologist, or radiation oncologist and make that appointment without regard to your GP's timeline.
But, beware the wormhole of ground glass nodules. I still have them reported nearing 20 years of life after lung cancer diagnosis. The best advice I can give is to find a physician who wants to do frequent scanning to look for nodule changes. In fact, tell them this is what you want. After all, you are paying for service.
Stay the course.
Tom

Jim,
I'm a veteran and a lung cancer survivor who's navigated the complexity of VA medicine. I also have a "PhD in inhalers" with three different types in my inventory. MD Anderson is a super hospital and attending physicians always prescribe the latest and greatest medication on the market. And new inhalers proliferate. Here is my suggestion. Take your MD Anderson prescriptions to your VA hospital and ask your assigned VA physician for a consultation with a VA pulmonologist. The VA pulmonologist should be able to prescribe an inhaler (or combination of inhalers) in the VA drug system that works just as well as the Anderson-prescribed Trelegy Ellipta.
Of course, the hard part of the aforementioned is waiting for a VA physician appointment but free drugs might be worth the wait.
Stay the course.
Tom

Blossomsmom,
Good to hear from you again but sad you might need to join us in survivor mode.
One of the upsides of having a pay-for-service health system is direct access to specialty physicians. Exercise that right and see a pulmonologist, medical oncologist, or radiation oncologist and make that appointment without regard to your GP's timeline.
But, beware the wormhole of ground glass nodules. I still have them reported nearing 20 years of life after lung cancer diagnosis. The best advice I can give is to find a physician who wants to do frequent scanning to look for nodule changes. In fact, tell them this is what you want. After all, you are paying for service.
Stay the course.
Tom

Oh darn it! Are you a candidate for any immunotherapies? Apparently it is quite effective to treat/prevent brain metastases.

Yay for the gamma knife you got this
Chuck

PStar,
Sorry to hear about this new met.  I've heard so many good things about gamma knife that I can't help but be confident that they will zap that little sucker successfully.  It's quite the coincidence that you should have another treatment one year to the day, but strange things happen in life.  Please keep us updated on this and know that you are in our prayers and thoughts.
Lou

Hi all. Just an update. I went for MRI of my brain on Oct 11th and it showed a new 5mm deposit on my right temporal lobe. I had a 3mm deposit on my left temporal lobe last year in Oct which was treated on Nov 7th 2022 with gamma knife which zapped it. I am scheduled for gamma knife ironically on Nov 7th (what are the odds!) to take care of this new one. I hope it is as successful as the other. The Dr has put me on keppra as a precaution til the gamma knife. I also had CT of lung/abdomen/pelvis which shows stability of nodules in lung and adrenal gland.

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

If it were me I’d go to an oncologist or pulmonologist and  have it followed up now.  This waiting May work for the observers but not the patients. Good luck

I’m not new to this group having been on here in 2019 & 2020 while dealing with my mom’s lung cancer diagnosis and treatment. The information and support I received from the members were invaluable. But I’ve returned because of the concerning results I received from a recent CT scan done because I’ve been a smoker for many years and have a cough that I can’t seem to get rid of. I have a 2.6 cm mixed ground glass and solid nodule in my upper right lung. Report says ACR category 4A and that a short 3 month follow up CT is recommended. I guess when it’s not their lung, 3 month is a “short” time. But I digress. Message I received from my primary care doctor was to have the CT scan redone in January and that we will discuss the results at my appointment in 1/28/24. Ugh. Seems like a long time to wait for what I’m pretty sure will not be good news. I hate to think that way but having lost both my mom and dad to lung cancer, I can’t help but think “is it my turn?”. 

Welcome Jim,
Good to learn another veteran has joined us. I am a retired career soldier and have Medicare plus Tricare for Life. Like you, I'm a medically disabled soldier and I am eligible for medical care through the VA system.
Predicting future drugs after surgery is difficult. I had three back-to-back thoracic surgeries, the first removing my lung and the remaining two dealing with a fistula in my bronchus stump. I recall a short course of narcotic pain medication that was inexpensive and not very expensive. So I can't suggest any drug names to assist you.
Stay the course.
Tom

Jim,
I'm a veteran and a lung cancer survivor who's navigated the complexity of VA medicine. I also have a "PhD in inhalers" with three different types in my inventory. MD Anderson is a super hospital and attending physicians always prescribe the latest and greatest medication on the market. And new inhalers proliferate. Here is my suggestion. Take your MD Anderson prescriptions to your VA hospital and ask your assigned VA physician for a consultation with a VA pulmonologist. The VA pulmonologist should be able to prescribe an inhaler (or combination of inhalers) in the VA drug system that works just as well as the Anderson-prescribed Trelegy Ellipta.
Of course, the hard part of the aforementioned is waiting for a VA physician appointment but free drugs might be worth the wait.
Stay the course.
Tom

Welcome, Sue!
Don't worry about corrections. Anyone who suffers from this disease gets an automatic bye on mistakes. Lung cancer is complicated.
You are right. Outsiders don't understand our disease. We don't display symptoms until late-stage disease and then we're out of circulation in an ICU or home hospice.
Come February, good Lord willing, I'll be fortunate to celebrate my twentieth year since diagnosis. My treatment mayhem is over, but memories are carved deep in my soul. Like all of us, I am one scan away from bad news. Having said that, my calendar reminds me of an October 27 annual CT scan prior to my visit to my medical oncologist. Hopefully, the scan will show no evidence of disease (NED) and I can enjoy the Fall holiday festivities.
Stay the course.
Tom