PET/CT scans

[Julia g]

Anyone have PET/CT scans for lung nodules 10mm? Both my nodules are roughly 10 mm and pulmonologist told me there are many false negatives with lung nodules this size. I am scheduled for another "peek" in 4 months but he warned me even if Pet/CT scan is negative I will continue to have CT's every 4-6 months. 

[Judy M2]

I get PET/CT scans every 3 months, both to monitor for any recurrence of my adenocarcinoma, and also for any change to a stable 6mm nodule in my right lung. The nodule is too small for characterization by PET, so my oncologist has just been watching it. I've had chemo, radiation and am on a targeted therapy, and the nodule hasn't changed in many months. 

[Julia g]

Thanks Judy. I have not been diagnosed with lung cancer. Just on the watch list. So I am wondering if a PET is worth doing with lung nodule 10 mm. I'm wondering what the false negative rate is? BTW I love your oncologist's Book. I listened to it on audible and Im ready to replay it. Wonderful Book! and every doc should aspire to be like Doc E. 

[Judy M2]

Julia, I'm so glad you liked his book! It really helped me too. 

I don't know about false negative rate or if PET is worthwhile for small nodules, but I think regular CT scans are very reasonable. Let's hope yours remain stable and aren't cause for concern. 

[LouT]

Julia G,

I had a small nodule 6x8mm that a pulmonologist caught.  We watched if for a bit and did a PET Scan, but the scan was inconclusive.  So, after a few months the nodule had grown and that is usually a sign that it is not benign.  As a matter of fact when I asked the surgeon what he thought was the probability that my nodule would be benign he told me 10%, because most nodules (60%) are benign, but remain stable over time.

So, I would agree that you let them keep an eye on it and determining by future data what the best course would be.

Lou

[BridgetO]

Hi Julia,

I had a nodule about that size and was on a "watch list" like you. My nodule was discovered in a routine survellance CT because of an earlier Stage 3 gynecologic cancer. The nodule grew a bit. I had a PET scan and nothing lit up. My nodule was in a location that couldn't be biopsied by needle or by bronchoscope. The docs (pulmonologist and surgeon) recommended surgery. They said my nodule on CT didn't look like a metastasis, but there was always a risk that it could be. The pulmo said it did look like it might be  a primary lung cancer. I had a lobectomy and it was, in fact, a non-small-cell lung cancer. 

So two points: watch and rescan is pretty common for small nodules, and  small, slow growing nodules don't always light up on the PET scan.  I think if your nodules grow, it might be worthwhile to have a biopsy ( if they're  in a place where it can be done), no matter what the PET scan says.

Bridget 

[ChiMama]

Hi Julia - I was diagnosed with colon cancer in 2016 and had a PET at that time that showed a 1cm (10mm) nodule with "mild activity" SUV of 1.1.  The report said "Infection or inflammation is favored, neoplasm is felt less likely with this uptake intensity," so it was put on the watch list for my regular followup scans.  Also it was measured in various CT scans over the next 4 years as 9mm as each scan is read by a different tech, but was considered stable until last year when it grew to 1.1cm.  That was when my pulmonologist recommended the biopsy, which came back adenocarcinoma.  After the biopsy, another PET was ordered and the SUV was 2.3.

So I'm not sure if the first PET qualifies as "False negative" or that it was just too small, not growing fast, or maybe not developed into cancer yet.  Watching with regular scans is always wise and any further growth discussed for possible biopsy and/or PET.

[Julia g]

@Bridget my nodules are in a location that pulmonologist says can't be biopsied with bronchoscope or needle so he says he will send me to surgeon if Pet/ct shows growth or light up too. @ChiMama thanks for your info also!

[LouT]

I had the same situation Julia.  My nodule was tucked so low in my right lung that they tried, but didn't complete a CT-Guided Biopsy.  The doctor felt that it was too difficult to get a good sample while risking pneumothorax.  In my case I wound up going to a surgeon and he when he resectioned the nodule and it turned out to be Squamos cancer.  I hope you'll get all yours as well.

[Julia g]

@Lou how large did your nodule grow when it was recommended you had surgery

[TJM]

I had a nodule discovered 16 years ago that was 1 cm or so and stopped getting surveillance. Yep. I was having having some symptoms and I suggested getting an X ray. NP said CAT scan. 

Long story short my nodule was now 4cm round stage III large cell. So, nothing wrong with surveillance. Just keep on top of it.

Peace

Tom

[LouT]

Julia,

It went to about 11x13mm.  So, in my case my biopsy turned into my lobectomy.

Lou

[Julia g]

@LouTThanks for sharing Lou. Continued good thoughts your way and for everyone on this forum. 

[BrianK]

On 6/18/2021 at 4:57 PM, Julia g said:

@LouTThanks for sharing Lou. Continued good thoughts your way and for everyone on this forum. 

Hi Julia,

I noticed you’re in the Modesto area too like me. Did the physicians you talk to mention coccidioidomycosis to you at all? A lot of us who grew up in the valley have had it even if we didn’t realize it and end up with nodules. I’m hoping that’s the case for both of us. 

[Julia g]

No Brian I did not grow up in the central valley. My nodules are being monitored at Stanford Lung Nodule Clinic. I am under the care of a pulmonologist there. 

[BrianK]

8 minutes ago, Julia g said:

No Brian I did not grow up in the central valley. My nodules are being monitored at Stanford Lung Nodule Clinic. I am under the care of a pulmonologist there. 

Unfortunately i have Kaiser who aren’t exactly top tier. I wish I could switch insurance and go to the same clinic as you do but i think Kaiser is going to force me to stay in their system. 

[Julia g]

@BrianKi am paying privately as I want to be followed in a good hospital 😊I wish you well with your CT tomorrow. The waiting is tough. But hopefully you will have a good news. 

[Judy M2]

My pulmonologist told me that Valley Fever would be a best-case scenario (it wasn't for me). Hopefully that's what caused your nodules. 

[ChiMama]

On 7/19/2021 at 1:04 PM, BrianK said:

Hi Julia,

I noticed you’re in the Modesto area too like me. Did the physicians you talk to mention coccidioidomycosis to you at all? A lot of us who grew up in the valley have had it even if we didn’t realize it and end up with nodules. I’m hoping that’s the case for both of us. 

My pulmonologist mentioned Valley Fever as a possibility for my nodules too, as I live in the Phoenix area and before that Southern California. This is a consideration for anyone living in - or previously visiting - the Western US (AZ, CA, CO, NM, NV, UT, TX) especially dry desert regions, and it's spreading into other states.  I had a titer test done 5 years ago and it showed 1:2 which is low but means I may have been exposed and not known, so we still watched the nodules with every scan and one eventually ended up being NSCLC. My dog got Valley Fever and was moderately sick with it and on medication for a year to push it back.

Fingers crossed for your scan to be a good one!

[BridgetO]

My pulmonologist spotted some scarring in my lungs and she asked me where I grew up, whI told her I grew up in Fresno( in the Central Valley, for those of you not familiar with Calif. geography, she said I had probably had Valley Fever (coccidiodomycosis) as a child. I did have pneumonia a couple of times as a child, and that might have been it. She easily distinguished the VF scarring from the spiculated nodule that turned out to be my NSCLC. 

[TJM]

On 7/19/2021 at 2:40 PM, Julia g said:

@BrianKi am paying privately as I want to be followed in a good hospital 😊I wish you well with your CT tomorrow. The waiting is tough. But hopefully you will have a good news. 

I may go private this year as well. Both kids off plan and my wife's individual plan is much cheaper without me. Had private insurance for 6 years. Actually liked. All the best

Peace

Tom

 

[TJM]

15 hours ago, ChiMama said:

My pulmonologist mentioned Valley Fever as a possibility for my nodules too, as I live in the Phoenix area and before that Southern California. This is a consideration for anyone living in - or previously visiting - the Western US (AZ, CA, CO, NM, NV, UT, TX) especially dry desert regions, and it's spreading into other states.  I had a titer test done 5 years ago and it showed 1:2 which is low but means I may have been exposed and not known, so we still watched the nodules with every scan and one eventually ended up being NSCLC. My dog got Valley Fever and was moderately sick with it and on medication for a year to push it back.

Fingers crossed for your scan to be a good one!

Unfortunately that fact is why I quit following my nodule. Life and logic got in the way.

Obviously a bad call

Peace

Tom

[Julia g]

@TJMInsurance companies have become so outrageous and inhibit good doctors from ordering, prescribing,  & overall treating their patients. I decided that I wanted to be seen at the best possible lung nodule clinic in my area. Right now, its worth the out of pocket expenses I have incurred. I'd rather pay my doctor than pay the insurance company

[Julia g]

@ChiMamaI Grew up in New York and didn't migrate to the West Coast until my mid twenties. I know Vally Fever is prevalent in the west. Like Judy and Bridget said it would be a much easier diagnosis to deal with than nodules and LC. Glad you followed your nodules and got a proper diagnosis. So sorry about your dog getting sick