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Just starting into uncertainy.


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Hi, I am just starting into an uncertain phase in life, having recently been advised by my physician that a recent CT scan is indicating numerous pulmonary nodules in both lungs.   My initial reaction was that I had just been handed a death sentence. But, actually that death sentence was in the works back with I started my 45+ year smoking habit.   More testing of course, and perhaps the news may no be as dire as I imagine.   So, I guess we shall see.

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Hi there, and welcome. First, no beating yourself up for smoking. If you're still smoking, obviously you should quit, but the rest is water under the bridge. I smoked about the same amount of time as you. But lots of smokers never get cancer and lots of non-smokers do. It's a moot point at this juncture.

Second, the majority of lung nodules are not cancer. What is your doctor recommending? Unless any of the nodules are big enough to biopsy, the usual course is to re-scan in a few months and see if there are any significant changes.

So don't get ahead of yourself. The good news is that lung cancer isn't what it used to be--there are amazing new treatments available all the time and we have quite a few long-term survivors here.

Keep us posted and try not to get carried away with possibilities.

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I'm so sorry you are dealing with uncertainity right now. It's a difficult spot to be in. But, I'm really glad you found this space.  We are here to support you.  I just wanted to share Lung Cancer 101 with you so you can see how lung cancer is diagnosed and some of the steps you might go through.  There are many, many times where nodules are not cancer, but there is a ton of information here in case you need it. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer

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Even when I was diagnosed with lung cancer in October 2019, my PCP said it's not a death sentence anymore. For me, she was right. Nodules don't necessarily mean cancer. I imagine your next step is to see a pulmonologist. Try not to panic while you wait for your testing to come through. 

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tnthomas,

You've heard some good nuggets here today and I'll just reinforce them by saying, "don't get ahead of yourself".  Nodules are between 60-90% benign so take it easy until you've gone through good testing.  Then, and if, cancer is found, there are many forms of treatment that keep it from being the certain death sentence it once was.  I'll also give you a bit of advice:

  • CT Scans are much better than X-Rays in identifying nodules and other growths.  But NEITHER identifies if those growths are malignant or benign growths.  For that you'll need other tests such as a PET Scan and, the gold standard; a biopsy.  
  • If you do get a biopsy advocate (that's my way of saying "insist on") having genetic biomarker testing done on the biopsied material.  This could be important in defining an effective treatment for you.
  • Stay calm, lose the "blame-game" (1 out of 6 present smokers get lung cancer), and focus on asking questions, listening closely to the testing procedure and ensuring that you are getting a thorough testing.

Please feel free to look around at some of the posts, you'll find many stories similar to yours.  Stay connected with us and keep your chin up, you won't have to go through this alone.

Lou

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Thanks all for such good information and reassurance. 🙂        I have been smoke-free for almost 11 years, perhaps that made some difference.   I guess my initial anxiety was heightened by a  friend's husband that's undergoing chemo(then radiation ) to try to shrink a tumor that is causing pain.  Unfortunately, they are giving him a prognosis of 6 to 12months.

My doctor is going to have Radiology schedule another CT scan in 1-1/2 months.  I have made the mental adjustment to accept the waiting game, and see that a final diagnosis may take possibly years.  I would rather endure the wait than get a quick dose of bad news.

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I can fully understand your feelings.  But it won't take years of months.  The testing may take days to weeks to get all results.  At least, with your preference about waiting, you won't go through the anxiety that we all do because we hate the long wait until we have final results.  But, I'm sure you'd like answers as well.  I can tell you that regardless of the news once you get the final results you'll either be greatly relieved or at least feel settled that you know what you are dealing with and know what the counterattack will be.  Hang in there, you'll hear soon enough.

Lou

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During the phone visit the doctor undoubtedly told me the details of the CT exam, as I was absorbing what he said and was simultaneously assessing the impact of what all that meant, some data fell through the cracks.  But, with Kaiser Permanente I can visit the website and access the provider's notes.  Here's his description of the pulmonary nodules: 

Quote

The patient had a CT scan of the lungs that showed multiple
pulmonary nodules. The larges one is 5 mm and is ground glass in
appearance.

OK, so 5mm= .19 inches(almost 1/5th of an inch.    "ground glass in appearance", hmmm.  I guess that's less menacing looking than "black & green".  

Now Radiology is supposed to call to arrange the next CT scan (on or after Oct 14,2021) but last time I ended up having to call them, so I'll wait to sometime next week before I just go ahead and make the call for appointment.

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Okay, so one of the nodules is a GGN (Ground Glass Nodule).  That still doesn't confirm cancer.  There are some pretty weighty tomes on nodules and I think Tom Galli has a resource he recommends, but I can't find it right now.  Some GGN's disappear over  time...some could be indicative of adenocarcinoma, others are found predominantly in young, non-smoker folks and particularly those of Asian descent.  So, once again, I caution you to not get ahead of the doctor.  You are still in the territory of "maybe it is and maybe it isn't".  Eventually biopsy or resection will be the determining factor.  Remember that even 5mm (1/20") is still very small.  So, hang in there and let's see what comes of next scan.  In the meantime, you may want to call your doctor back and ask the question specifically about the probability that the GGN is cancer and ask him for his rationale around the answer.  What you experienced (listening to the doctor and missing content) is pretty normal and we always try to guard against it or, in the case of an office visit, have someone else there with us in case we miss points because of emotional static.  Hang in there Thomas.

Lou

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Thomas,

Lou is right about the nature of ground glass nodules. The appearance of this phenomena does not confirm a cancer diagnosis. And your nodule is indeed very small. Here is the resource I use for understanding pulmonary nodules.

This may sound disingenuous and I certainty didn't abide by my own advise (lesson well learned), but patience on the diagnostic trail is indeed a good virtue. Believe me, if your diagnosis is confirmed, you'll have plenty of time to worry. For now, maximize the opportunity to enjoy life!

Stay the course.

Tom

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@LouT & @Tom Galli,

Thanks for putting this all in perspective.   I'm actually keeping a positive mindset, I am anxious to "get on with it" but I do understand that a diagnosis will eventually be made, and I appreciate the careful, methodical process will take time.   I have a fairly new doctor,  and we communicate well.   

I am pretty fit for a 69 yr. old man, am in business doing fitness classes locally. This keeps me fit as well, physically & mentally.   I'm just going to keep doing what I'm doing.

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  • 2 months later...

Update:
I had my follow up CT scan Oct 27th, had to wait the usual 3 weeks in suspense.

Result: no change in shape, size or number of the pulmonary nodules, next follow up scan in 9 months.

No news is good news, I marked my calendar for the follow up and will put the matter out of my mind.

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