Tom Galli

Jkidd,
Welcome here. I completely understand your concern.
I agree with edivebuddy. Speculation does not mean cancer but it is a concerning sign, especially given the size. But, after 20 years of surviving lung cancer, my yearly CT scans still report speculated lung nodules.
Here are some suggestions. Ensure your surgeon submits a biopsy of your kidney tumor for 2 kinds of evaluation: a histology (microscope) procedure and a follow on laboratory analysis to check for biomarkers in the sample. The histology examination is always performed while the biomarker testing may not be.  Laboratory testing will report if your cancer will respond to new types of chemotherapy including immunotherapy that can control or hopefully eliminate your cancer.  Here is some more information on biomarker testing.
Has your surgeon performed a PET scan? This page contains information about PET scans and what they mean. The PET scan will report if tumors or nodules are metastatic. If you've not had a PET scan and if the histology examination shows cancer in your kidney tumor, then after surgery, consult with a medical oncologist after you recover from surgery. This medical discipline treats cancer of all types and all stages.
Godspeed for tomorrow's procedure.
Stay the course.
Tom

I am new here and am not too sure what to say other than that I am terrified. My mom was diagnosed with Stage 4 NSCLC, EGFR, Exon 19 del in 2021 and put on Tagrisso right away. Until this January, she had pretty mild symptoms and was thriving on Tagrisso. (Just some skin and nail issues that she deemed as manageable.) Over 2022/2023 she occasionally had several bone spots that required radiation, but overall the Tagrisso seemed to be working well for her brain and bone mets. In January 2024 she started having some dizziness and double vision. She was diagnosed with Leptomeningeal Disease at the beginning of April and I am absolutely terrified. She is not doing well emotionally (understandably) and neither am I. It all feels very surreal. I lost my dad 12 years ago and am terrified of being an orphan in my early 30s. I can't imagine my life without her and I am all consumed with researching LMD and possible treatments to the point where it's obsessive and unhealthy. She is such an active person and she's been trying to maintain her active lifestyle, which is good but it's hard to watch when she struggles with fatigue and nausea and dizziness. We got her a second opinion at MSK with Dr. Boire last week, which was good. I just feel overwhelmed and sort of hopeless right now. Sorry for the long ramble, I appreciate whomever reads this. 

Marie,
The truth is that the majority of lung nodules (ground glass opacity or not) are not malignant, so having one or more disappear is not an unusual thing.  Most hang around and are stable with the occasional one that can become potentially malignant.  In your case the news seems to be good.
Lou

Thanks everyone. I’m getting along slow but steady. Have a follow up with my surgeon today. We’ll see what she has to say. 

You are doing just fine.  Keep active and listen to your body it will tell you when to rest.  The spirometer is your best friend right now, so keep on using it.  The chest tube wound bothered me for months.  Sometimes it still itches/burns a bit today, but nothing to write home about.  You're moving, walking, breathing, and healing.  Keep up the good work!
Lou

Lilly,
So very sorry to learn about your dad's diagnosis. My only suggestion is a PET scan to confirm the single nodule as the only metastatic activity, then precision radiation to zap the nodule. Precision radiation can be as effective as surgery without the complications of surgery.
Stay the course.
Tom

I’m 9 days post surgery and I’m doing ok.  Still very uncomfortable where they took the chest tube out (pulls and pinches) and sleeping on my back is getting old.  I am pushing myself to  walk 3 times per day, 1 mile each time and move about the house in between. The stairs are a challenge from a breathing standpoint but that’s slowly improving. My spirometer is getting a regular workout. Although this hasn’t been as easy as I thought it would be, I think I’m progressing. Some days are better than others which I think is pretty normal. 

Hi Anthony, Sorry to hear about your LC diagnosis. but there are lot's of success stories.
As for me, it's been a while since I posted.
Dx: Stage IV NSCLC (no mutations, PDL+) in Feb 2022, Age 45 at Dx
Started on carboplatin, alimta and keytruda. Significant regression in 6 months though not complete resolution by July 2022
Continued on maintenance therapy for a year (alimta and Keytruda - every 3 weeks). Unfortunate progression in same place as earlier locations detected in August 2023. Keytruda and alimta stopped.
Switched to Paclitaxel, Bevacizumab and Carboplatin for a 6-cycle course. Have seen regression or stable disease since.
Just completed my PET-Scan yesterday. Will get results today.
Happy to be alive for last 2.5 years since Dx. More time with family. Haven't had much side effects that are not manageable. Loss of hair yes (has grown back since), some neuropathy due to medication - but otherwise hale and healthy.
So good luck. Stay the course as Tom says.
 
 

Lilly,
So very sorry to learn about your dad's diagnosis. My only suggestion is a PET scan to confirm the single nodule as the only metastatic activity, then precision radiation to zap the nodule. Precision radiation can be as effective as surgery without the complications of surgery.
Stay the course.
Tom

Lilly,
So very sorry to learn about your dad's diagnosis. My only suggestion is a PET scan to confirm the single nodule as the only metastatic activity, then precision radiation to zap the nodule. Precision radiation can be as effective as surgery without the complications of surgery.
Stay the course.
Tom

Hello all, it has been ages since I posted, I miss this forum. I hope you all are well! I am doing well so far, next scans coming up in 2 weeks and scanziety at peak. I have been unable to post as my mental health has been reeling. Too many family members suffering serious health issues, to say it was extremely hard is an understatement. Latest my dad, 78, has been diagnosed with lung cancer, adenocarcinoma ROS1 mutation. Any of you has this mutation? I am gutted. You may remember my own adenocarcenoma is EGFR exon 19. I am in deep shock thinking irrational things like fearing for my son having mom and grandpa having lung cancer and thoughts of future risk for him. I know ROS1 is an aggressive mutation but also know there is targeted therapy. Dad has other lung issues due to previous open heart surgery, fibrosis and smoking damage so probably surgery is not an option though his one lone module is small, under 2cm, no other evidence of cancer. I have no idea what to tell him! Any tips?

Hi Lee.
Thank you so much.  I am trying to focus on the positives in all of this and cannot wait to have it out, whatever it may be. 15 days until surgery and I wish it was tomorrow.
I had my PET scan last week and I think it is fairly good news. Here were the two main takeaways:
(the nodule demonstrated 1.1/1.2 SUV and was noted as 1.6cm which is the size it has been but the recent CT said it was now 1.9com-so who knows on that)
"...mild metabolic activity, this finding is concerning for malignancy."
BUT it also said "The remainder of the study demonstrates no abnormal hypermetabolic glucose activity to suggest malignancy/metastatic disease elsewhere"
So, even though "concerning for malignancy" is scary, I am a little less freaked out as I was very worried about what may be lurking. I am hoping I get the news you did and wish you continued clear scans. 

I was stressing needlessly. It startled me more than anything. The stitch stung but for only a very brief time. No biggee after all.
 

I'm sure it's going to say No evidence for local Recurrence or distant metastasis.  Good luck I know waiting is an anxiety filled part of all our lives.  It gets better.

Hard to believe last April was my 1st year anniversary of my RLL lobectomy. Of course that means it's CT scan time again (last one was October of last year).
 
Here's hoping for likewise good results!

Soooo goood hearing from you, Blossom!!  I'm so glad things went well, you are home and starting your recovery.  Here's to clean nodes and margins as edive said.  Lou's experience hopefully will reiterate how important it is to rest while being up and about a little here and there.  Hoping you begin feeling a little better every few days or so.

Congratulations.  Important results for you. Clean margins clean nodes will be back quick.  The biomarker testing may take some time.  Glad it all went well.  Do your rehab as they tell you. Don't skip it and keep moving. Before you know it you'll be back to normal. 

Blossomsmom,

Congratulations on coming through so well.  You're not far off regarding walking...prior to surgery I did 5-6 miles/day my first day home I could barely get around my home without panting.  It took weeks for me to get back to my pre-surgery condition.  Just keep your progress steady and don't overdo it and you'll see how your body will respond.  Remember your lung has been through a traumatic event and needs to relax and heal before it will function at its best.  Also remember that the spirometer can be your best friend.  I used to get up, walk around and then go back to bed for a nap (and I never usually nap).  Be patient with yourself, stay active in a smart way, eat well, stay hydrated so you'll begin to feel better faster than you may expect.
Lou

Good morning all. Surgery is done (Monday afternoon) and I am home (late afternoon yesterday). Ended up with an upper right lobectomy and removal of 12 lymph nodes. Surgeon said it’s normal to feel like I’d been hit by a Mac Truck and that I did very well. She aced taking out the chest tube, speaking very fast to distract me and it was done 😊. We should get some of the details from pathology tomorrow, some results will take longer. Surgeon did say the lymph nodes looked and felt like they will come back fine but can’t be 💯 sure until pathology does their thing. Even though I read and reread Lou’s tips and tricks for surgery, I find I’m still surprised at how just a little walking around the house tires me out. Guess 20% less lung capacity will do that. I’ve been taking the pain meds and am comfortable for the most part. I have a whole new appreciation for our bed that has one of those frames that goes up and down at the head and feet. Especially after not sleeping much in the hospital. 
Thanks to you all for your encouragement and knowledge. It has been invaluable. I’m sure I’ll have lots more questions going forward down this road.

Love this news.  Your experience has now become someone's future guide through their situation.  Do that happy dance with your family and enjoy every day you've been given.
Lou

Doctor just called. Report on the tumor that she removed was NSCLC. ALL the lymph nodes she removed are clean and clear. No further treatment will be needed. We will discuss future surveillance when I see her in 2 weeks. My family is doing a happy dance. I look forward to doing one as soon as I’m healed and can breathe normally again!

Stay the course Aimee!

Blossom,
Oh my, stop obsessing. I've had 6 chest tubes installed and removed after my 3 thoracic surgeries. Removal is a piece of cake. I experienced no pain. The surgeon installs a circular stitch around the hole opening during surgery. When the tube is removed, the ends of this stitch are immediately pulled sealing the whole without pain
Stay the course.
Tom

Stephanie,
I feel your pain. One of my 5 lines of treatment was a combination chemotherapy using Taxol and Carboplatin with the targeted therapy drug Tarceva. Like Tagresso, Tarceva induced GI "instability". In my case, I had to run to the bathroom throughout the day on short notice. When blogging this complaint, a survivor told me to try a bowl of plain steamed rice as my first meal in the morning. My GI difficulty laughed at Immodium but respected the rice. Most days, I could eat nearly normal after my unadorned breakfast. Note, do not use parboiled rice like Uncle Ben's. For some reason, that variety does not work.
We have a section on our Forum that provides "tips and tricks" posted by community members. It is titled Lung Cancer 101 and can be found here.  
Stay the course.
Tom
 

Nutshell background-1.6cm right lower nodule found incidentally 2/23. Monitored with no changes until last week. CT says it is now 1.9cm. Doc says it's go time to get it out. Segmentectomy scheduled for 6/5.
I had a PET scan yesterday morning and got the results in the afternoon. I never thought I would think a report that says "concerning for malignancy" would be good news, but I think it is overall. The nodule had an uptake of SUV 1.1/1.2. The rest of the lungs are clear with no other suspicious things.
The report says..."Given interval increase in size and mild metabolic activity this finding is concerning for malignancy." 
BUT. also says.. "The remainder of the study demonstrates no abnormal hypermetobolic glucose activity to suggest malignancy/metastatic disease elsewhere."
The PET marks the nodule as 1.6cm not 1.9cm so who knows on that. 
Side note- scanxiety is for real. It was a nerve wracking day. I was a wreck thinking about what could be lurking. There is still a lot to worry about but I am breathing somewhat easier.
Aimee