Newbie

[J L W]

I was recently informed that ai have a .9mm lobulated, spiculated, non-calcified nodule in right lung found on CT. Radiologist called it highly suspicious. Doc ordered a PET-CT and it was performed 3/03/17. Waiting on results. Of course I'm interested in the results, but Doc is out of the office all week. Anyone start out this way? Not asking anyone to diagnose, just curious about your experience.

 

[Tom Galli]

J L W,

Welcome here.  We all kind of start out that way -- a scan, an uncertain result, another scan and waiting.  I really hope your wait is for a negative PET scan result. 0.9 mm is a very small nodule.  By my approximation the nodule size in inches is 0.035".  I'm surprised anything that small would return on a CT scan, especially with the lobulated, spiculated descriptors. 

Let us know what your doctor says after consultation.

Stay the course.

Tom

 

[CIndy0121]

Are you sure it isn't 9mm or .9cm? Neither the CT nor the PET will confirm if the nodule is cancerous or benign. It may show "activity" in another part of the body that might heighten their suspicion. Depending where it is located, they may do a needle biopsy. If the PET reads clear, they might also suggest a resection of one lobe that would remove the single nodule. Or they may ask you to wait and scan again in 3 months to see if there are any changes before deciding what, if anything, to do. You should be hopeful that if everything else is clear, even if they are correct in their suspicion, you might be diagnosed at stage I which is curable by the method(s) you decide together. Until then, that's what it is..."suspicious". Let us know what else you learn.

Cindy

[Meloni]

On 3/5/2017 at 9:25 AM, J L W said:

I was recently informed that ai have a .9mm lobulated, spiculated, non-calcified nodule in right lung found on CT. Radiologist called it highly suspicious. Doc ordered a PET-CT and it was performed 3/03/17. Waiting on results. Of course I'm interested in the results, but Doc is out of the office all week. Anyone start out this way? Not asking anyone to diagnose, just curious about your experience.

 

Hi JLW,

Like the others, I would ask clarification about the size of the nodule (or perhaps you have a typo?). The size you indicate, 0.9 mm, is 1/10 of one millimeter. Ten millimeters equals one centimeter. CTs /PETs have a difficult time picking up spots and details of spots that are less than one centimeter. If I recall correctly, the medical community categorizes a mass as >/=3 cm (30 mm), and a nodule as <3 cm (30 cm).

The beginning of my story is similar to yours, but our diagnoses may be very different. I had a 1.3 cm (13 mm) nodule that was spiculated and lobulated. It was first discovered by x-ray, and followed-up by CT. Due to my low risk demographic and exposure history, my medical providers chose to ignore it. I persisted, and found a pulmonologist who ordered a PET and subsequently a bronchoscopy, which diagnosed my NSCLC. 

I spent hours researching lung diseases prior to my diagnosis--I'm clearly not an expert, but your nodule might not be cancer. People have nodules that are completely benign. I am the worst follower of my own unsolicited advice, but try to focus on pleasant activities, and avoid getting caught up in the "lung cancer hole" of the internet this week. Easier said than done, I know. 

When you get back with the doctor, remember that you are your own best advocate. Be persistent if you feel they are putting you off. However, since your doctor ordered a PET, it doesn't sound like they are putting you off. Is your doc a general practitioner, a pulmonary doc, a thoracic surgeon, or an oncologist?

Meloni

[J L W]

Hi, Very sorry guys. 

The nodule is 9mm.  I see the doc again Monday afternoon. He told me he thought is was a 50/50 chance.

i appreciate the comments. I'll let you know what happens.

[Meloni]

I'm glad to hear you meet with doc on Monday. 

Please share the outcome of appt with us, if you are comfortable with that. 

I have a doc appt tomorrow afternoon as well, so wishing us both good mojo! 

 

Mel

[J L W]

Followup - Review

CT Scan = 9mm lower lobe - spiculated, lobulated with irregular borders - non calcified - 

Met with the doctor yesterday after my PET scan. He said there was no uptake and no lymph nodes involved (Im happy about that) which gives us time to see if it grows over 3 months. So I'm scheduled for another CT in 90 days. I kinda liked his initial approach which was more aggressive.

 

 

 

[Mally]

Thats great news !!

Sent from my SM-N920I using Tapatalk

[Tom Galli]

Wonderful news J L W!  Do the clean scan dance.

Stay the course.

Tom

[Meloni]

That's fantastic!!!! Woot woot!!!

[J L W]

So, Still waiting on the repeat CT.  My PET san was negative, which gave me a better feeling about all this.

While waiting, several medical friends told me I should get a second opinion. I got a second opinion and the 2nd Doc said that  PET has a lot of false negatives on 9 mm nodules. He cited several relatively recent cases he's working with patients similar to my situation that tested negative on PET, but positive on aspiration and VATS. He also said that since it is non-calcified, speculated and lobulatedi, thats not a good sign at all. 

Anybody else have similar experience? I ask because the information available on the net is confusing. in this case, google is not my friend. 

[ljuliemoss]

Oh the eternal waiting game. Would love a black and white answer too. Until then, live life to the fullest, be happy and do what you need to deal w anxiety! Hugs Julie

[BridgetO]

My tumor was a false negative on the PET scan-- it didn't light up at all. Repeat CT showed it was growing, but very slowly.  Due to location, it couldn't be biopsied without taking it out. I had VATs lobectomy and it was adenocarcinoma stage 1A. As I understand it, PET scans show metabolic activity, and small slow-growing cancers don't metabolize a lot, so they sometimes don't show up.  If you do have lung cancer, it seems likely it would be very early stage and curable with surgery.  

Waiting is a big drag, I know. I focused on living my life a day at a time. I do have some moments (and occasionally longer than moments) of anxiety, but mostly I'm just keeping on keeping on. I just came back from the Lungevity Hope Summit. It was really inspiring to see so many LC survivors having a good time!

Hang in there!