Tom Galli

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.....

Hi, I had a 6MM incidental find lung nodule, monitored yearly with no growth. On the 3rd year this past February it was 9MM. Pulmonologist said biopsy or remove. I made appt to follow up but visited a specialist from NYU meantime to get second opinion. This DR said biopsy or remove. I am 47, i was a more then 20-year smoker and my father had lung cancer in his 40's. My father had a lobectomy and survived; he is now 80 years old. 
The second DR told me He advises removing instead of biopsy since its growing it should be removed anyway. I scheduled the removal in April, I have a PET scan scheduled this week. 
Can someone weigh in on this please, 
DR said he would remove it and test it while i am in operating room, if it came back as cancer, he would remove more i guess to clean it out and then close me up. If not, cancer, then just close me up. 

You're very welcome.  Knowledge is a blessing to us who suffer from this terrible disease.  I hope you'll stick around and get to know more of the good folks here.
Lou

@Livin Life, I'm glad you found this site. It's been the most reputably helpful of the few I've found, as well as the most genuinely supportive. We have waves of activity, depending on who's checking in. 
I don't know much about what you're experiencing. I had ground glass after radiation therapy fried my tumor. It has gradually cleared as the severe inflammation from immunology-induced pneumonitis resolved but it was a very long haul. 
Keep us posted!
 

Hi Denise,
Wondering if your pain ever subsided?  I had a 2.5×2.5 cm nodule removed in May of 2023 and am still in pain.  I have resisted opiods thus far because they scare me, but gabapentin is just not cutting it anymore.  Finding incredibly difficult to concentrate and function at all.
Thanks,
Jason

Bob,
Sorry to hear about the recurrence but glad you found us.  Nodules that grow are definitely worth getting a biopsy and I understand that they want more mass so they can do a better job of getting the sample they need to test properly.  The waiting is terrible and I remember feeling great anxiety during my initial diagnosis and especially when I was told to "wait 3 months" before the next scan.  Needless to say I was not a happy camper.  I'm so glad that you gave up the smoking.  Regardless of the COPD I'm sure that your breathing is most likely better now than when you were active in the habit.  That will be a help through this.  Please keep us updated and feel free to ask any questions you want.  We have a pretty large base of survivors on this site with a great variety of diagnosis and treatments so there is a lot of experience to share.  You won't need to go through this alone.
Lou

Woo hoo, good for you!

Thanks so much for sharing some of your story and for the welcome, Lou!  Yes, to cancer all over the family.  I didn't mention my mom died (at 85) in 2011 of a primary brain tumor and my brother died of kidney cancer at age 53 in 2005.  My mom lived a week after diagnosis and my brother 3 or 4 months.  I actually have one sister left who is 70.  I am almost 62.  Yes to various cancers in the extended family too. 
Thanks for the resources.  I have been doing a lot of reading the last handful of months though due to other health issues I generally stick to medical articles, etc.  I have seen the timelines for life expectancy are way off so thank you for that reminder.  Because I am likely to have adenocarcinoma if diagnosed I am not too worried b/c of all I've read, including from survivors on some other sites.  I think back to my dad who was diagnosed in 1975 when there were few treatments.  They said he likely had lung cancer five years before diagnosed.  With surgery and Cobalt treatments back then he lived 2 years.  Blows my mind when I think about that so when I see all that is available today and how so many are doing I don't question that.  Though... I do see some who do not fare well or for long....  
I will check out the Lung Cancer 101 and blog before long.  Haven't been awake long and have to get ready for work here soon : )    Thanks again, 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

Just want to introduce myself.  I'm still in differential for lung cancer diagnosis or whatever else this might be though told by local onc I likely have a slow growing lung cancer (assuming adenocarcinoma).  I have changes on HRCT scans from 2015 and 2016 (done for other lung issues) compared to low dose CT Sept and Dec 2023.  Pulm is from a large academic medical institution with NCI; local onc is from a small collaborative cancer center though not NCI.  If diagnosed I'll have the large academic NCI take the lead - they're 4 hours away.  No biopsy yet - I opted for rescan in early July 2024. Sept to Dec 2023 scans were fairly stable with multiple ground glass in all lobes with one solid and one that turn solid over these years.
I'm no stranger to lung cancer.  Lost my dad when he was 56 to lung cancer (likely adenocarcinoma); I was 13.  Lost my older sister to lung cancer (she was 48) in 2004 (assuming small cell - she was gone in three months) and my younger sister to lung cancer in 2019.  My younger sister had a rare neuroendocrine small cell lung cancer.  Anyways, I'm just trying to learn more - I'm a big fan of health forums.  I have many health issues, mostly due to autoimmune issues so frequent some health forums.

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

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

Hey everyone, I had my surgery on the 12th and I’m doing ok! They went in via thoracoscopy and saw that my upper lobe was significantly smaller than it should be (likely just a structural anomaly). So they had to go ahead and perform a mini thoracotomy and take out the entire lobe. It was really tough at the beginning but I was still able to get up and move around in the hospital and I went home after 3 days. Each day gets better and I’m thankful to have my brother in town to help. Thank you also to everyone who posted with encouragement and resources, it was all very helpful. 
 
Does anyone have any suggestions on how to deal with sharp diaphragm spasms/pains? Is there anything to be done to lessen the pain and/or spasms or will they ease up with time? They were really bad in the beginning then subsided and have now started up again since increasing my amount of movement/time walking. 
 
-Dina

Hi, I’m having surgery to remove an atypical carcinoid in my upper left lobe in 3 weeks. They may do a partial resection or have to take out the entire lobe. We won’t know until they get in. They plan to do this via VATS and this is my first surgery for this and I’m overwhelmed and terrified. I have lots of other chronic, autoimmune, genetic conditions having nothing to do with this so I’m not sure how my body will respond. Any information/suggestions/questions to ask the surgeon are welcome. While this isn’t my first surgery, this is my first lung surgery. 

Kamoto,
Ensure you tell your medical oncologist about any homeopathic remedies you intend to try before using them. Some don't mix well with chemotherapy, targeted therapy or immunotherapy.
Stay the course.
Tom

TGIF,
Oh my, I hope others are not having difficulty getting Alimta! Paying for it (and for all new medications) is always another matter. I believe your information about Medicare pricing is correct. Medicare is insurance. It is a very large program and is often a market maker price-wise but you are correct. There is no requirement for private insurance plans to adopt Medicare pricing. 
I'm glad your clinic found another affordable source.
Stay the course.
Tom

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!

Hi Stephanie and welcome here. Edive buddy is right that expecting blood levels to stay the same isn't realistic.  Neutrophils- white blood cells that fight infections- especially take a beating, My lung cancer was stage 1a and I didn't need chemo., but 12 years ago I had a different cancer that was stage 3 and aggressive. Chemo caused my neutrophil count to dip and the second time it went to zero, an emergency situation. I was given antibiotics to stop possible bacterial infections . After  subsequent infusions I had neupogen, given by injection, and it kept my neutrophils from crashing again.  I also had an infusion of packed red blood cells when anemia reached a dangerous level. My treatment was 12 years ago and I have been NED (no evidence of disease) since.
My point is that if blood levels of anything reach a dangerous level, there's usually some action that can be taken to remedy the situation- medication, biologicals, supplements, postponing your infusion until the level rises, etc. It usually isn't a reason to discontinue a regimen that's working.
Advanced cancer of any kind is life-threatening and treatment often needs to be aggressive to control it. So hang in there, talk to your oncologist about the significance of each level that's low, and what if anything needs to be done about it. Hang in there and I wish you a long and meaningful life.
Bridget O