1. < Lung Cancer

Making sense of PET scan report

Posted by jcalkins @jcalkins, Oct 3, 2023

I'm hoping to get some help understanding the report from my PET scan I had last week. Unfortunately, I don'ts see my pulmonologist until a week from today and I would rather not spend the next 7 days with my mind wandering through every answer Dr. Google provides. I am a firm believer that worry only robs me of my joy today. But in this moment I'm struggling a little.

About 15 years ago we found a tumor on the right lobe of my lung. They had a hard time getting a biopsy because of where it was located. The ended up attempting a needle biopsy, but told me they couldn't actually get a biopsy because it kept "escaping" - They decided it was probably a hamartoma tumor because of the inability to puncture it. I was told to quit smoking (25+ year smoker) and we would keep an eye on it. I did quit that day.

Over the years the tumor would be seen on x-rays when I would have pneumonia or bronchitis. But I did not have any medical provider following it consistently.

Flash forward to 3 months ago, I had a nagging cough and a bit of trouble with breathing. Doctor tells me I have bronchitis and "by the way you have a spot on your lung that looks suspicious". CT scan ordered and a referral to the pulmonologist. Pulmonologist said the tumor looks concerning and that it had grown a bit since it was originally found. He says he does not think its a hamartoma and if I hadn't been a former smoker for 25+ years, he would probably wait and see a bit longer, but he wants me to get another CT in 3 months. About a week later, a friend reminds of the time I had my appendix removed and there was a small carcinoid tumor on the tip. I recall learning that carcinoid tumors are also frequently found in the lung. I provided that information to the pulmonologist and he sent me for a PET scan right away.

That was Friday. Today I got the report. This is what was at the conclusion of the report.

IMPRESSION:
1.7x 2.0 cm nodule which demonstrates moderate hypermetabolism with a peak SUV 2.6.
Moderate hypermetabolism is noted in the subcentimeter jugulodiagastric lymph nodes. Peak SUV measures 3.1 on the right and 3.2 on the left. No FDG avid lymphadenopathy is noted in the chest, abdomen or pelvis.

There are other details about Peak SUV measures for mediastinal blood pool (3.9) and Liver SUV (4.3). I have no idea what any of that means.

I would appreciate any insight anyone here might have. I understand that no one here can tell me a diagnosis, but I am hoping to learn more about what these details mean.

Thank you,
Jullie

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Mentor
Lisa, Volunteer Mentor | @lls8000 | May 20 1:35pm
In reply to @jonijean "Had wedge resection of lingula (lower part of upper left lung) and mediastinal lymph nodes because..." + (show)
@jonijean

Had wedge resection of lingula (lower part of upper left lung) and mediastinal lymph nodes because a less than 1 cm nodule "lit up" on a PET. I am 69 years old female with 40 plus pack years of smoking. I quit in 2011. This nodule didn't seem like much (had been watching it for years) but doc got interested when more began to emerge. This all started after I had covid back in 2020 then again and again last year. I also aspirated a couple times while taking a drink during a funny movie. I felt positive that this nodule was benign. I work for BIODESIX, a lab that has the lab test, NODIFY LUNG. My doc wouldn't place the order for me so the company did it. The test came back approximately 12% non malignant. The doc wasn't interested in it at all and was very adamant that I have the wedge resection as the nodule was so small and near the heart. He scared me so I agreed and all they found was small benign Harmatomas. This surgery was very painful and I remember crying out that I couldn't breath which was horrible and the lymph node resection around my heart was exceptionally painful. I'm home now, glad it was benign, but wish the doc had paid more attention to the NODIFY LUNG test results because my recovery may take a while. Wanted to ask you, have you been tested for Alpha One Antitrypsin Deficiency disease?

Jump to this post

Hello @jonijean, welcome to Mayo Connect. As patients, it's certainly difficult to know what the best next steps are. I'm glad that you were fortunate to have a benign nodule.
How is your recovery coming along?
Have you been tested for Alpha One Antitrypsin Deficiency disease? The Lung Health, COPD, or MAC groups may have members with this condition.
(https://connect.mayoclinic.org/comment/840980/)

REPLY
1 reply
jonijean | @jonijean | May 20 2:31pm
In reply to @lls8000 "Hello @jonijean, welcome to Mayo Connect. As patients, it's certainly difficult to know what the best..." + (show)
@lls8000

Hello @jonijean, welcome to Mayo Connect. As patients, it's certainly difficult to know what the best next steps are. I'm glad that you were fortunate to have a benign nodule.
How is your recovery coming along?
Have you been tested for Alpha One Antitrypsin Deficiency disease? The Lung Health, COPD, or MAC groups may have members with this condition.
(https://connect.mayoclinic.org/comment/840980/)

Jump to this post

Hello. Surprised to hear from someone. I do not have Alpha One Antitrypsin Deficiency. I was actually a Prolastin infusion nurse until just recently. Docs ruled out MAC. What I had was a hamartoma. Actually had a NODIFY LUNG test which said only 12% chance of malignancy and 3 lung docs said it’s cancer (it wasn’t) and did a wedge resection and lymph node removal. Especially when it was unnecessary. But now I know for sure, right?
Thanks for telling me about the links.

Sent from Yahoo Mail for iPad

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | May 20 2:49pm
In reply to @jonijean "Hello. Surprised to hear from someone. I do not have Alpha One Antitrypsin Deficiency. I was..." + (show)
@jonijean

Hello. Surprised to hear from someone. I do not have Alpha One Antitrypsin Deficiency. I was actually a Prolastin infusion nurse until just recently. Docs ruled out MAC. What I had was a hamartoma. Actually had a NODIFY LUNG test which said only 12% chance of malignancy and 3 lung docs said it’s cancer (it wasn’t) and did a wedge resection and lymph node removal. Especially when it was unnecessary. But now I know for sure, right?
Thanks for telling me about the links.

Sent from Yahoo Mail for iPad

Jump to this post

Sometimes the doctors don't know until they see the cells. It's unfortunate that you had to have the resection to get that answer. I hope you start to feel better.

REPLY
pb50 | @pb50 | May 20 2:59pm
In reply to @jonijean "Lower Left wedge resection and lymph node removal was awful. I'm 69. Mine was benign." + (show)
@jonijean

Lower Left wedge resection and lymph node removal was awful. I'm 69. Mine was benign.

Jump to this post

Im one of those weird people that would be angry if I went through all that pain and they had guessed wrong. In my case i will always angry they took the entire lobe instead of stopping with a wedge resection for a 1.4 cm mass.

REPLY
1 reply
jonijean | @jonijean | May 20 3:11pm
In reply to @pb50 "Im one of those weird people that would be angry if I went through all that..." + (show)
@pb50

Im one of those weird people that would be angry if I went through all that pain and they had guessed wrong. In my case i will always angry they took the entire lobe instead of stopping with a wedge resection for a 1.4 cm mass.

Jump to this post

I'm not thrilled but now I know for sure, right? The stress was killing me. Was your mass benign? Mine was only 8mmx8mm and had been about that for 2 years.

REPLY
pb50 | @pb50 | May 20 3:38pm

No mine was stage 1 and was 14mm x14mm - we had watched for four years beginning at 8 mm. I’m just aware that it was previously the “gold standard”’to do a lobectomy, but newer research is showing that within certain parameters such as SUV on PET, size, etc there is not a statistically better outcome doing a lobectomy instead of a wedge resection.

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