PET Scan Positive

[Miriam]

Hello Everyone,

My name is Marie and I’m  so thankful that there is this forum.  After a short vacation which resulted in a trip to Urgent Care for what I thought might be broken ribs, the X-ray revealed an incidental finding of a mass on my upper left lung. A CT scan confirmed a 3.6 cm lesion and the PET scan showed glucose metabolism, thankfully there was no other activity anywhere else in the body.   I am scheduled for the PFT on Friday and the biopsy on Monday. 
 

When looking at the lung cancer statistics, it is not promising.  But I’m hopeful because I have a good God who will walk me and my husband through this.  
 

I’m still in the disbelief stage from the PET results and am feeling even more vulnerable as I anticipate what the biopsy might reveal.  My sister-in-law is being hopeful that maybe it’s just a fungus and not cancer because she read about something that stated that a fungus can also have glucose metabolism.   I have been very healthy and take no meds. I’m 58 and only smoked a little in high school.  
 

I’m looking forward to reading about how people are living with this diagnosis.  If you can respond with what has helped you to live life to the fullest in spite of the diagnosis and treatment, that would be helpful.  Thank you all for your input. 

[Tom Galli]

Marie,

Welcome here!

I apologize up front that we’ve suffered a major Internet outage as a result of last night’s storm. So I am confined to writing on a small phone screen with “big thumbs”. Normally I link sources of information on LUNGevity’s knowledge base—Lung Cancer 101. Do check out this resource at LUNGevity.org, particularly content on PET scans and biopsy. 

I’m an 18-year survivor of progressed Stage IV NSCLC, squamous cell. My life after treatment, including the loss of my right lung has been rewarding and fulfilling. My treatment was not a walk in the park, but I can still actually walk in the park. There is life after lung cancer. Check out my Stay The Course blogs for highlights of my life during and after treatment. If you really want details, you can read my book Scanziety in the Kindle Store on Amazon. 

My bottom line up front is if I can live, so can you. I was diagnosed in the dark ages of treatment. There were only 2 drugs to “treat” my lung cancer, Taxol and Carboplatin. In reality, they did a lousy job attacking solid tumors and that is why I had 18 infusions of the stuff. I had side effects during treatment and still experience side effects but I can “walk in the park”

Read my blog “Comprehending The PET” for insight on SUV uptake. Yes, inflammation by any means may generate a SUV (a fungal infection, for example) but at a certain level, say greater than 6, metastatic disease is presumed. 

Your pulmonary function test (PFT) will help determine if you qualify for surgery as a treatment. While your CT and PET scans are suspicious, your biopsy should be conclusive. If your tumor is confined to the upper lobe of your left lung, a lobectomy surgery should solve the problem (look up Surgery in Lung Cancer 101 to understand a lobectomy). You’ll likely be offered adjuvant chemo after surgery and I’d take it. Anything you can do to make your treatment “one and done” is best practice!

I have about 30% total pulmonary capacity. Our last transatlantic cruise before COVID had a back end tour of England and Scotland. With that capacity limitation, I was able to climb thousands of stairs to walk the grounds of the Edinburgh Castle. It took me a while but I made it and I was 70 when I made the climb. At 58 and missing a single lobe of your lung, you could climb those stairs easily. So after treatment, go to Edinburgh and see the castle. 

If your biopsy confirms lung cancer and if you decide on treatment, you will be granted extra life. How much is not the operative question! What you do with it is. 

If you have lung cancer, we’ll help you every step of the way through this disease. We understand what you face. We know about uncertainty. We also know there is life after lung cancer. 

Stay the course. 

Tom

 

[LouT]

Marie,

Welcome to our forum...there are a host of reasons why the stats on the web are not worth the webpage they are written on.  One of the most important is that they are 5-year averages that may not proportionately take into account newer treatments, other elements and most importantly the history and condition of the patient.  Regarding smoking, all you need to get lung cancer is a set of lungs.  There could even be other environmental factors involved or none at all.  

In order to help you get started let me share something written by Tom Galli (who has already responded to your post.  It's titles '10 Steps to Surviving Lung Cancer; from a Survivor" and it can be found here.  And as a help to your interaction with your new medial team there is an article called; "What to Ask Your Doctor" which can be found on this page. 

You'll be hearing from more people very soon and you'll be impressed with their stories as well as their longevity.  For my part I was diagnosed with NSCLC and had surgery in May of that year.  As of the present time I am NED (No Evidence of Disease).  So, have on there you may wife up seeing your set for you journey along this path.

Stay with and you'll see feel much better than you thought you would.

Lou

[RJN]

Hi Marie,

I don’t have much to add to the extremely helpful and knowledgable Tom and Lou above, but as a more recent LC person, I wanted to welcome you, and encourage you to use this site as you go through this journey. It has meant all the world to me as I went from a perfectly healthy 49 year old in August of last year, to being diagnosed with NSCLC stage 4. I have been through (and still on) immunotherapy and a long radiotherapy course, and all signs are good so far. I have been able to live fairly normally, although I have learned to give myself a break as the mental part of being diagnosed and undergoing treatment can be the toughest.

But of course crossing my fingers that your PET just shows something less serious and you won’t need us.

keep us posted. Rikke

[Susan Cornett]

Hi Miriam and welcome. Sorry you have to be here but glad you found us. Tom and Lou have provided you with wonderful information - they always do. 😉

The statistics? They're crap. I looked at them once and had a panic attack. I haven't looked at them since. I was diagnosed 6 years ago with stage IV NSCLC. I've had a lobectomy, chemo, and radiation. I took a wonderful trip to Hawaii just as I finished radiation. Except for 2020, I've taken my annual beach trip with my friends. This is not to say I didn't have dark days because I did. I ended up on anti-depressants that helped me get back move forward. I've been cancer free for 3.5 years. I leaned on this forum and found great advice and information. Ask us anything - we've all been there.