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.

@lls8000

@julie67, Julie, I'm sorry that you're having to face this, and so soon after losing your mother. Ugh, that's tough. This disease doesn't play fair and is often difficult to understand. I'm glad you found Mayo Connect, welcome. Now it's time to take a deep breath and focus on what's in front of you. You recognize that this report is concerning but try to stay hopeful. Treatments today are much better than they were even five years ago. There is much more hope!
Has a biopsy been scheduled? When is your next appointment with oncology?

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Got my biopsy July 2. Lung collapsed. Spent 2 days in hospital. Had a bronco 2 weeks before that because lymph nodes in that lung lit up. Came back no cancer in nodes but then why are they lighting up? Scheduled for surgery and then chemo. Terrifed. Thanks.

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Julie I am not well versed on what can light up a PET other than cancer but i know there are several. Try to help yourself maintain a neutral expectation of results.

Here is just one of many online references stating that all that glows is not cancer.

… So, PET scans may reveal hot spots that aren't necessarily related to cancer. False positives can happen due to conditions such as: bacterial and fungal infections

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@julie67

Got my biopsy July 2. Lung collapsed. Spent 2 days in hospital. Had a bronco 2 weeks before that because lymph nodes in that lung lit up. Came back no cancer in nodes but then why are they lighting up? Scheduled for surgery and then chemo. Terrifed. Thanks.

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@julie67 , Oh no, a collapsed lung can be difficult to work through. I'm glad that they recognized the situation and admitted you. As @pb50 noted, areas on PET scans can light up for several reasons. It basically means that your body is 'active' in that area; it can be an infection, fungal, cancer, COVID, inflammation, etc. The level of 'uptake', or the amount that the area lights up (super bright or just slightly), may help to guide your doctor in the next steps.
The doctors from my first bronchoscopy (of lymph fluid) told my husband that I had cancer before I was even awake. So, be thankful that it's not obviously cancer.
A bronchoscopy three years later didn't show cancer, but the PET was dimly lighting up. Eventually they determined that I had a lung fungus. Not cancer.
Your doctors have seen enough to determine that they want to do surgery to get a better look at the tissue once it's removed. It's an overwhelming time for you, that's completely understandable and normal. What type of surgery are you scheduled for, wedge resection, lobectomy? Are you comfortable with your team and the plan?

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@lls8000

@julie67 , Oh no, a collapsed lung can be difficult to work through. I'm glad that they recognized the situation and admitted you. As @pb50 noted, areas on PET scans can light up for several reasons. It basically means that your body is 'active' in that area; it can be an infection, fungal, cancer, COVID, inflammation, etc. The level of 'uptake', or the amount that the area lights up (super bright or just slightly), may help to guide your doctor in the next steps.
The doctors from my first bronchoscopy (of lymph fluid) told my husband that I had cancer before I was even awake. So, be thankful that it's not obviously cancer.
A bronchoscopy three years later didn't show cancer, but the PET was dimly lighting up. Eventually they determined that I had a lung fungus. Not cancer.
Your doctors have seen enough to determine that they want to do surgery to get a better look at the tissue once it's removed. It's an overwhelming time for you, that's completely understandable and normal. What type of surgery are you scheduled for, wedge resection, lobectomy? Are you comfortable with your team and the plan?

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Thanks Lisa! Overwhelmed. All I know is the oncologist I saw yesterday or the day before (all running together now) told me the surgeon wanted to 'take out the top half of my right lung'. He said I would live a normal life, most likely. Really? With half a lung?! That oncologist told me I may not need chemo if they 'get it all'. Both my primary and another oncologist I in the hospital for the collapsed lung said I WILL need chemo for any stray cancer cells. Which one is what they usually do?

And when they biopsied my lung I found out from this oncologist , they did NOT send it for bio-markers!!! He is ordering those on it. This guy is from a different hospital. Now who dropped the ball on the lung biopsy for not ordering biomarker testing (i think that's what he said)----the interventional radiologist who did the biopsy, my pulmonologist who ordered it or the oncology guy they are sending me to at the hospital where they did it?

And my pulmonologist wanted me to have another PET scan this week and another CT scan. I just had both in MAY!!! Do they do them that often?? what, are they just curious how fast this is spreading as i sit here being a dying guinea pig??

thanks, freaking out. This thing is growing fast and nothing getting done. julie

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@julie67

Got my biopsy July 2. Lung collapsed. Spent 2 days in hospital. Had a bronco 2 weeks before that because lymph nodes in that lung lit up. Came back no cancer in nodes but then why are they lighting up? Scheduled for surgery and then chemo. Terrifed. Thanks.

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My PET lit up "mildly avid" and my docs, 2 surgeons, pulmo, and radiologist all thought it was cancer with mets and it was not. It was hamartomas. They did a wedge resection and took some mediastinal lymph nodes anyway. My BIODESIX, Nodify Lung, test came back 12% chance of cancer. So It was correct. Not cancer.

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@julie67

Thanks Lisa! Overwhelmed. All I know is the oncologist I saw yesterday or the day before (all running together now) told me the surgeon wanted to 'take out the top half of my right lung'. He said I would live a normal life, most likely. Really? With half a lung?! That oncologist told me I may not need chemo if they 'get it all'. Both my primary and another oncologist I in the hospital for the collapsed lung said I WILL need chemo for any stray cancer cells. Which one is what they usually do?

And when they biopsied my lung I found out from this oncologist , they did NOT send it for bio-markers!!! He is ordering those on it. This guy is from a different hospital. Now who dropped the ball on the lung biopsy for not ordering biomarker testing (i think that's what he said)----the interventional radiologist who did the biopsy, my pulmonologist who ordered it or the oncology guy they are sending me to at the hospital where they did it?

And my pulmonologist wanted me to have another PET scan this week and another CT scan. I just had both in MAY!!! Do they do them that often?? what, are they just curious how fast this is spreading as i sit here being a dying guinea pig??

thanks, freaking out. This thing is growing fast and nothing getting done. julie

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Hi Julie- Hey, it is normal to be freaked out! I think every one of us who hear the word Cancer, has freaked out. I had it in my upper left lung. Adenocarcinoma, stage 1a. They caught it earlier (9 years) at another hospital but “dropped the ball” and never told me or my primary! I had a full body CT due to a car accident. Anyway, in March of 2023 I had a “trisegmentectomy”. I am doing fine. (They took pieces of the left lobe instead of the entire lobe). Surgery to get the cancer out is the Best option, usually. Every one wonders if they’ll be able to breathe afterwards and if they’ll be able to do the things they could before. It’s all normal thinking. I wish you well! By the way I walk about 20+ miles a week and do yard work and have a job. I go for weekend getaways with my husband, dance, etc. You must stay confident and positive!
Cindy

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@cmcguire10

Hi Julie- Hey, it is normal to be freaked out! I think every one of us who hear the word Cancer, has freaked out. I had it in my upper left lung. Adenocarcinoma, stage 1a. They caught it earlier (9 years) at another hospital but “dropped the ball” and never told me or my primary! I had a full body CT due to a car accident. Anyway, in March of 2023 I had a “trisegmentectomy”. I am doing fine. (They took pieces of the left lobe instead of the entire lobe). Surgery to get the cancer out is the Best option, usually. Every one wonders if they’ll be able to breathe afterwards and if they’ll be able to do the things they could before. It’s all normal thinking. I wish you well! By the way I walk about 20+ miles a week and do yard work and have a job. I go for weekend getaways with my husband, dance, etc. You must stay confident and positive!
Cindy

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Thank you. I had my lung function test yesterday to see if i even have the lung capacity for surgery. See the surgeon Thursday to see what he says. Waiting is the worst as yall probably know. Just afraid this has spread since May (my last CT and PET) as fast as it was growing from oct to may. ok, back to cleaning. I live alone and have nobody. Do they let you go home alone if you have nobody to help you? Hugs to you. julie

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@julie67

Thank you. I had my lung function test yesterday to see if i even have the lung capacity for surgery. See the surgeon Thursday to see what he says. Waiting is the worst as yall probably know. Just afraid this has spread since May (my last CT and PET) as fast as it was growing from oct to may. ok, back to cleaning. I live alone and have nobody. Do they let you go home alone if you have nobody to help you? Hugs to you. julie

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Julie- Waiting is the Worst part I think! I tried to keep busy with everything. You may want to check in getting some kind of home care for at least the first few days. You cant lift anything really and getting in and iut of bed can be a chore until you figure it out! I am lucky and have an adjustable bed so that was a God send! i can’t stress enough that it is super important because tou’ll need to eat and cooking, or even just microwaving can be exhausting IF you can do it. You wont be able to drive for at least a week, so I’m sure tou wull have to have someone to drive you home. What State are you in? Are you near a large city?

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@cmcguire10

Julie- Waiting is the Worst part I think! I tried to keep busy with everything. You may want to check in getting some kind of home care for at least the first few days. You cant lift anything really and getting in and iut of bed can be a chore until you figure it out! I am lucky and have an adjustable bed so that was a God send! i can’t stress enough that it is super important because tou’ll need to eat and cooking, or even just microwaving can be exhausting IF you can do it. You wont be able to drive for at least a week, so I’m sure tou wull have to have someone to drive you home. What State are you in? Are you near a large city?

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Thanks for the headsup. I am in Evansville, Indiana. I guess my insurance will either have to pay for me to go to a nursing home for a while or have a home health aide for a few days?? Sounds like they just can't send me home alone. Now I am worried I will lose my animals. Nobody to take care of them. oh, man, this is a mess. How long were you in the hospital before they sent you home? Thinking about how long I can leave my cat and rabbit alone here. I am on a fixed income so no money to hire anyone. thanks for the advice. I told my insurance company this was gonna happen!!!

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@julie67

Thanks for the headsup. I am in Evansville, Indiana. I guess my insurance will either have to pay for me to go to a nursing home for a while or have a home health aide for a few days?? Sounds like they just can't send me home alone. Now I am worried I will lose my animals. Nobody to take care of them. oh, man, this is a mess. How long were you in the hospital before they sent you home? Thinking about how long I can leave my cat and rabbit alone here. I am on a fixed income so no money to hire anyone. thanks for the advice. I told my insurance company this was gonna happen!!!

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Hi Julie- I was in the hospital-start to finish- March 24th, day of surgery to The evening of March 26th. It should have been afternoon but paper work and shift changes made it last until evening. It will all depend on your health and how you are doing. I knew I had to get up and start walking as soon as I could. I had a catheter, and a chest tube, IV pole, etc., but with a nurse by my side, was walking the hall by the next afternoon. The chest tube is to inflate your lung until it can stay inflated on its own. It sounds worse than what it is. They will take all of that iut the following day if all is well. You’re in a liquid diet for the first day and then you can move to softer foods if all is going well. I had things prepared before I went in. I had meals prepped so they just needed reheated, I had everything at a reachable height. I had a bed table that had my drinks, tissues, book, remote, etc. so I didn't have to reach. Put your cat’s dishes on the counter and dishes so you can just feed it without reaching down or up. (I had 2 cats and a Husky at my surgery time). Preparing before hand is the beat thing you can do! If you don’t have an adjustable bed gather lots if pillows or a wedge pillow. You won’t want to be laying flat. Getting out of bed is ine if the hardest chores because it pulls on your incisions. You should be able to talk with your Doctors and the Hospital. They may have programs to help you. Medical transport, and home health services maybe? Talk with them before so they can work with you and have it set up for a smooth transition to your home. They should also be able to talk with your insurance company to help you get the things you’ll need. I hope this helps? I’m sure there are others on this connect that can also give you advice on what they know of. God Bless You! I wish I were close as I would come and help you myself, but I am in AZ.

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