Introduction

[Scottk]

Hello,

 

So I was in the emergency room back in February with chest pain. Diagnosed with pneumonia in left lung by ct scan, given antibiotics and sent home. Cleared up in a couple days but was told to follow up in a couple months with a pulmonologist which I did. New ct scan showed something still there and slightly larger. Next was pet scan which shows activity so needle biopsy. 2.8cm nodule of adenocarcinoma. Now scheduled for lobectomy of left lower lobe next week. Was supposed to be 2 weeks ago but got false positive on pre-op COVID test so had to wait 20 days. Got second opinion and everyone says this was caught very early so prognosis looks good. Got to the day before last time before the false positive so I know what the nerves will be like again next week. I normally handle things pretty calmly but this is difficult. It is good to be here with others in my situation.

 

Scott

[LexieCat]

Hi, Scott,

Sorry you've had to go through the pre-op jitters two times--once is enough. If it helps any, my lobectomy was one of the easiest surgeries I've ever had--my C-section hurt worse, and longer, than the lobectomy did. That was for the VATS procedure (video-assisted/laparascopic). Three tiny incisions and that's it. I missed only a couple of weeks of work.

One of our members, Lou, has put together a nice list of tips and tricks for lung surgery: https://forums.lungevity.org/topic/47249-thoracic-surgery-tips-and-tricks/ The ones I found the most helpful were to use a wedge pillow for sleeping for the first few weeks (you'll breathe easier if you are slightly elevated) and doing your breathing exercises diligently. They make you cough, which is uncomfortable and annoying, but coughing is important to keep your lungs clear.

One other thing--be sure a sample of your tumor is sent out for molecular/genetic testing. If it is positive for certain types of mutations, you might be able to use targeted therapy (a pill) instead of chemo, if additional treatment is needed.

Hopefully this time it will go off without a hitch.

 

 

[LouT]

Scott,

Welcome to our forums.  Sorry you have to be here though.  Let's start at the beginning.  You have a nodule/lesion that is about 1" in size and a lobectomy has been scheduled.  I can't say for sure, but perhaps it was caught at Stage 1.  This will either be confirmed or not once they do the lobectomy and the growth is taken out.  I too had a growing nodule in my lung and my lobectomy took place in April of 2019.  I've had plenty of follow-up scans since and I've been NED (No Evidence of Disease).  So, you can see that lung cancer is not an automatic death sentence.  When a biopsy was done, do you know if they also did a biomarker test?  The reason that is a good thing to do is that if there was ever a recurrence you might qualify for immunotherapy.  Speak with your doctor as that test can still be done after the lobectomy if they use samples they take out during surgery.  My next topic is for you to stay away from Dr. Google.  Most stats on the web are five-year averages and don't accurately indicate the present state of progress in treatment and longevity.

Lexie has already shared the article on "Tips and Tricks" so I'll share another with you.  This one is "10 Steps to Surviving Lung Cancer; by a Survivor" and it can be found here.

Stay strong and keep in touch here.  Also, ask any questions you may have as collectively, our group has been through almost anything there is related to this disease.

Lou

[Scottk]

Thank you for the information and advice. I will be asking some questions of my doctors from this information. The doctors have been hesitant to assign a stage yet but one said if she had to it would be stage 1. I had a second opinion at the UM Sylvester Cancer Center and they seemed to be very happy with how early this was caught. Apparently there is no evidence yet of any spread but I guess we will know better after surgery. I am very optimistic as at the age of 63 I think I am in generally great shape. After surgery I plan to do whatever is asked of me toward recovery and then some.

 

Scott

[Tom Galli]

Scott,

Welcome here.

Lexie and Lou have covered the necessary real estate in terms of cogent advice. It remains or me to welcome you here and wish you the best possible results in your forthcoming surgery.

Stay the course.

Tom

[Scottk]

Thank you Tom.

[Scottk]

Had the surgery Wednesday 10/20 full robotic. Went well came home last night 10/22. I can definitely see it will be baby steps. I have to tell you finding this forum helped calm me more than the first go around that was cancelled less than 24 hours before surgery. Thank you

[LouT]

Scott,

Thanks for the update.  So glad to hear that your surgery went well.  Recovery can seem insurmountable when you first come home, but if you keep at it, use your respirator multiple times a day, carefully get active and rest appropriately you'll be surprised at how quickly you can recover.  Since the surgery has your doctor done a determination of what stage your were diagnosed at?  Also, did you have the chance to ask for biomarker testing?

Lou

[Scottk]

I have asked for the biomarker testing. One of the doctors told me stage 1 but I will get more information at follow-up. I just received the pathology on lymph nodes that were taken and all are negative. I have been able to walk a good bit the last couple days and have taken it well.

[LouT]

Scott

 this It’s all good news to hear.  Keep it up. 
 

Lou

[Tom Galli]

Scott,

Great to learn you are up and about. Praying your next scan shows NED (no evidence of disease).

Stay the course.

Tom

[Scottk]

So I now have more information. They are calling this stage 1a and the tumor was T1. I met my oncologist today for the first time and although it looks like I am clear at this point they are now doing the testing on my tumor as to any further preventative treatment. I will have results in a couple weeks. 4 weeks post surgery and I am walking about 5 miles a day and continue to do the breathing exercises. I have to add that if anyone is in the south Florida area that from the surgeon to the nursing staff and now their cancer center at Memorial Hospital West everyone has been kind and supportive. The nurse that came on shift early the morning after surgery, while I felt like I had been hit by a truck, told me she would have me eating breakfast in a chair and walking down the hall before lunch. I thought she was crazy but guess what it happened. I can't thank them enough.

 

Best wishes

Scott

[BridgetO]

I love to hear this kind of news! Early stage cancer, fast recovery, and great medical care. Yay

[LouT]

Scott,

Good news all around.  And it sounds like you're on a good track to recovery.  Keep up the good work and attitude, it is serving you well.

Lou

[Scottk]

Hello everyone,

Your input has been very helpful through this. So now I will share the next chapter. Based on genetic testing of my tumor I am at intermediate risk of reoccurrence. They are suggesting 4 rounds of lower dose chemo, Pemetrexed and Cisplatin, 3 weeks apart. I am heavily leaning towards going ahead with this treatment. Any input you may have would be appreciated.

 

Be well

[Rower Michelle]

Hello Scott, 

Chemo or no chemo; that is the question....... I learned at the KU Cancer Center's annual lung cancer awareness event last year according to MD Anderson the risk of stage one recurrence is quite high; 70% within three years.    Unfortunately, I had no symptoms until stage iv like most people.   If it were me: I would hit this heinous disease with the motherload.   I would also be in consultation with a board certified Integrative Medicine Physician to learn what else can be done (diet, nutrition, supplements etc) to minimize the risk of recurrence.     Good luck... I'm really happy this was an early find.   

[LouT]

Michelle,

I've read in a few places that Stage 1a cancer recurrence rate is about 33% and 1b is a bit higher.  Can you please post a link for me to see the data you referenced?

thanks,

Lou

[Tom Galli]

Lou,

I noted your question on Stage I recurrence. Here is a National Cancer Institute paper that is somewhat dated. I'm not sure I've seen anything new in my reading that shows improvement.  I do think Michelle's advice is sound--throw everything you can at lung cancer as early as you can. It has also been my experience that surgeons as a community tend to paint rosy pictures of post surgical outcomes. Why would they not? Most of the time, they get what they can see, and they don't need to follow patients after surgery.

Lung cancer is nasty because of its recurrence rate. I hope immunotherapy makes a dent in that rate but I've yet to see anything published.

Stay the course.

Tom

[Scottk]

Here is a little of the information I was given. i am still digesting and researching.

[LouT]

Tom,

I keep getting the following error message when I click on that URL.
"Your session has timed out. Please go back to the article page and click the PDF link again."

Do I need an account to read the PDF?

Lou

[Rower Michelle]

Hi Lou,

The data was presented by a Percy Lee MD at MD Anderson using yet to be published.  It was also a professional continuing education session… I remember the medical professionals being pretty astonished.  

[LouT]

Thanks Michelle...wow, it actually turns the numbers I was told upside down.  

Lou

[Rower Michelle]

That’s a good way to put it Lou- it’s upside down—what the data suggests and the point Dr Percy Lee was trying to make is that surgery is one tool for LC treatment and shouldn’t be the only tool.  
He was advocating for early biomarker testing- and early intervention including targeted therapy (which is generally only considered for advanced LC).  

There are now EGFR clinical trials at stage 1 where curative treatment includes surgery, chemotherapy/radiation followed by maintenance targeted therapy.  This is what Tom means by hitting the disease hard and early can improve the outcome.   

[Scottk]

Hello everyone,

 

Started chemo on Tuesday and so far so good. The one side effect never mentioned that is apparently common is hiccups. Started yesterday and had them 6 times and twice so far today. I have found that biting a lemon wedge works for me. 4 times so far it has stopped them.

 

Scott