1. < Lung Cancer

New here. Guess i have lung cancer looking at my PET

Posted by julie67 @julie67, May 17 5:42pm

Hi all, I started out w/ ground glass 2 yrs ago. They tried to do a biopsy and after they had shot me up and did a CT they decided they couldn't as it was too risky and the nodule had 'shrunk'. In 2 weeks??! Anyway, CT scans every 6 months for 2 years. Last one in OCT 23 it was stable Today I am just getting home from my 2nd PET (first done 6-2022) and see the results. Terrified. My mom just died and left me in a mess, I have no friends or family. I was trying to fix everything because i knew this was gonna happen and now i can't even get to my bed from dragging her stuff in. Now what do i do??! sorry, shaking and freaking out. Googled it and foound this site. SUV of above 13!!!! now what??? julie

1. Highly suspicious right apical nodule demonstrating a maximum SUV of 13.7.
This has increased in size and activity since 2022.

2. Questionable, CT occult region of increased uptake in the right suprahilar
region could represent an abnormal lymph node.

2. No evidence of disease in the left thorax, mediastinum, or below the
diaphragm.

Narrative
PET CT

REASON FOR STUDY: Lung cancer

COMPARISON: 6/24/2022 and CT of the chest 5/2/2024

RADIOPHARMACEUTICAL: 5.5 mCi F-18 FDG intravenously.

Technique: Prior to injection of the radiotracer, the patient's blood glucose is
96 mg/dL. Following injection and an approximately 66 minute distribution
interval, PET scan is performed from the skull to the midthigh. Low dose,
noncontrast CT is performed in the same anatomic distribution for attenuation
correction of the PET scan and to assist in localizing the PET findings.

FINDINGS:

HEAD AND NECK: The visualized brain demonstrates no definite focal abnormal FDG
activity. Salivary, tonsillar and laryngeal activity appears ordinary. No
hypermetabolic cervical or supraclavicular lymphadenopathy is demonstrated.

CHEST: There is a 1.5 cm spiculated, hypermetabolic right apical nodule that
demonstrates a maximum SUV of 13.7 (previously 3.9). A focal area of
hypermetabolic activity in the right suprahilar region demonstrates a maximum
SUV of 5.7. No corresponding abnormality is seen on the grayscale CT images, but
this could represent a nonenlarged but pathologic lymph node. No other abnormal
uptake is seen in the chest.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

pb50 | @pb50 | May 28 8:59am

These biopsies on a small mass can be tricky. They sometimes have more success in tricky locations with robotic bronchoscopy. I’d take the radiologist for no better reason than it is first and i didn't have success with getting bronchoscopy samples on my 1.4cm mass.

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1 reply
julie67 | @julie67 | May 29 10:49am
In reply to @pb50 "These biopsies on a small mass can be tricky. They sometimes have more success in tricky..." + (show)
@pb50

These biopsies on a small mass can be tricky. They sometimes have more success in tricky locations with robotic bronchoscopy. I’d take the radiologist for no better reason than it is first and i didn't have success with getting bronchoscopy samples on my 1.4cm mass.

Jump to this post

How did you eventually get dxed with yours then?

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | May 29 11:05am
In reply to @julie67 "I just wrote this to someone else---so should they be doing more with the broncoscopy. I..." + (show)
@julie67

I just wrote this to someone else---so should they be doing more with the broncoscopy. I guess now. Sorry, my head is spinning again. Just got off the phone.

well, they have scheduled a broncoscopy and EBUS for 6/6 with my pulmonologist BUT told me I could also get in sooner for a biopsy with an interventional radiologist! Why would they do both? From what I understand the Bronco tells more than a biopsy through the chest so I think (!) he said he was just offering that to ease my mind because they can do that sooner but I still have to have the Bronco. So I don't need the biopsy with radiology if i can keep from losing my mind, is that right?

Jump to this post

@julie67, either method, bronchoscopy or needle biopsy, can be effective in getting the cells that they need to identify if this is cancerous. Each procedure comes with its own sets of risks, side effects, and potential benefits. Be aware that there will likely be more tests after the procedure and more waiting for appointments. It's not easy, but it's necessary. Check with your primary doctor if you feel that you need some help with taking the edge off the situation. It's not uncommon.

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1 reply
pb50 | @pb50 | May 29 11:39am
In reply to @julie67 "How did you eventually get dxed with yours then?" + (show)
@julie67

How did you eventually get dxed with yours then?

Jump to this post

The short answer is that we didnt. Mine was near the outside edge of the lower lobe, so the plan was to cut a small wedge where the mass was in the middle of it, send it to pathology for a quick read and if cancerous, remove the entire lobe - believed to be the “Gold Standard”. So that’s what they did.

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julie67 | @julie67 | Jun 2 8:17am
In reply to @lls8000 "@julie67, either method, bronchoscopy or needle biopsy, can be effective in getting the cells that they..." + (show)
@lls8000

@julie67, either method, bronchoscopy or needle biopsy, can be effective in getting the cells that they need to identify if this is cancerous. Each procedure comes with its own sets of risks, side effects, and potential benefits. Be aware that there will likely be more tests after the procedure and more waiting for appointments. It's not easy, but it's necessary. Check with your primary doctor if you feel that you need some help with taking the edge off the situation. It's not uncommon.

Jump to this post

Thank you. I am scheduled for broncoscopy this Thursday 6\6. He still says the biopsy is too dangerous on the big nodule so he is going to biopsy the lymph node. If that comes back negative, then we must do the biopsy. He said if it's positive, then it's chemo!! HUH!! That freaks me out. I thought they would just cut the lymph node out. Now I have to decide to take chemo or just die soon i guess. This has all grown in just 6 months so it seems very agressive. Why would he say chemo if the lymph is positive? Is that normal treatment? thanks so much!

REPLY
2 replies
denzie | @denzie | Jun 2 11:14am
In reply to @julie67 "Thank you. I am scheduled for broncoscopy this Thursday 6\6. He still says the biopsy is..." + (show)
@julie67

Thank you. I am scheduled for broncoscopy this Thursday 6\6. He still says the biopsy is too dangerous on the big nodule so he is going to biopsy the lymph node. If that comes back negative, then we must do the biopsy. He said if it's positive, then it's chemo!! HUH!! That freaks me out. I thought they would just cut the lymph node out. Now I have to decide to take chemo or just die soon i guess. This has all grown in just 6 months so it seems very agressive. Why would he say chemo if the lymph is positive? Is that normal treatment? thanks so much!

Jump to this post

Yes. It's in the lymph nodes which means it is in a system that circulates through the entire body- usually they use the term systemic. Removing the lymph node alone will not eliminate any circulating cancer cells. Chemo is a systemic treatment that can catch those circulating cells.

You've already survived one of the most miserable things my mom experienced with her lung cancer (collapsed lung) and you came through it. You've proved that you are stronger than you know.

Chemo is not the godawful treatment it used to be. They have learned that they can have the same outcome giving patients chemo 1-3 days out of 21 instead of the 8 days of 21 they used on me 13+ years ago. They have meds that better manage nausea.

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fivec | @fivec | Jun 3 6:57am

I don’t pretend to know what the info you sent means. All I know is that I read a lot of no’s. Those no’s are what we want to see. Good CT results are what we want to see. You have much positive info. Sorry your mother died. You have been through such tragedy. Sending many hugs. Your best days are yet to come. Keep up those good CT results! We care about you and are expecting to hear positive remarks from you soon.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Jun 3 1:05pm
In reply to @julie67 "Thank you. I am scheduled for broncoscopy this Thursday 6\6. He still says the biopsy is..." + (show)
@julie67

Thank you. I am scheduled for broncoscopy this Thursday 6\6. He still says the biopsy is too dangerous on the big nodule so he is going to biopsy the lymph node. If that comes back negative, then we must do the biopsy. He said if it's positive, then it's chemo!! HUH!! That freaks me out. I thought they would just cut the lymph node out. Now I have to decide to take chemo or just die soon i guess. This has all grown in just 6 months so it seems very agressive. Why would he say chemo if the lymph is positive? Is that normal treatment? thanks so much!

Jump to this post

Hi @julie67, I need to preface this with a reminder that none of us on Mayo Connect are doctors. We speak from our own experiences and research. I agree with @denzie, removing lymph nodes is not something that is normally done for lung cancer, at least at this step. They are currently on a fact-finding mission, not a curative/treatment mission. They need to know what they are up against before taking further action. That's smart. I've had lymph nodes biopsied and resulted (while I was still under anesthesia) before the pulmonologist went deeper into the lung. Taking fluid from the lymph node is less risky.
If it is positive, I would question, "if it's positive, then it's chemo". I would ask your doctor about biomarker testing. That can provide the team with additional information about what may be driving your cancer and may allow them to better match your specific cancer to a type of treatment. All treatments, including chemo, have advanced in recent years. Also, the drugs to combat side effects have greatly improved.
Try to take things one step at a time.

REPLY
1 reply
aprilradek | @aprilradek | Jun 5 11:59am
In reply to @julie67 "I just wrote this to someone else---so should they be doing more with the broncoscopy. I..." + (show)
@julie67

I just wrote this to someone else---so should they be doing more with the broncoscopy. I guess now. Sorry, my head is spinning again. Just got off the phone.

well, they have scheduled a broncoscopy and EBUS for 6/6 with my pulmonologist BUT told me I could also get in sooner for a biopsy with an interventional radiologist! Why would they do both? From what I understand the Bronco tells more than a biopsy through the chest so I think (!) he said he was just offering that to ease my mind because they can do that sooner but I still have to have the Bronco. So I don't need the biopsy with radiology if i can keep from losing my mind, is that right?

Jump to this post

Hi Julie, How are you? What is going on?

REPLY
Mentor
Lisa, Volunteer Mentor | @lls8000 | Jun 12 1:21pm
In reply to @lls8000 "Hi @julie67, I need to preface this with a reminder that none of us on Mayo..." + (show)
@lls8000

Hi @julie67, I need to preface this with a reminder that none of us on Mayo Connect are doctors. We speak from our own experiences and research. I agree with @denzie, removing lymph nodes is not something that is normally done for lung cancer, at least at this step. They are currently on a fact-finding mission, not a curative/treatment mission. They need to know what they are up against before taking further action. That's smart. I've had lymph nodes biopsied and resulted (while I was still under anesthesia) before the pulmonologist went deeper into the lung. Taking fluid from the lymph node is less risky.
If it is positive, I would question, "if it's positive, then it's chemo". I would ask your doctor about biomarker testing. That can provide the team with additional information about what may be driving your cancer and may allow them to better match your specific cancer to a type of treatment. All treatments, including chemo, have advanced in recent years. Also, the drugs to combat side effects have greatly improved.
Try to take things one step at a time.

Jump to this post

Julie, @julie67, Thinking of you. Did the bronchoscopy provide any additional information? Did you tolerate the procedure ok?

REPLY
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