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.

@julie67

Thank you. No, I am all alone. I didn't even have a car. Driving my mom's small 2 door car. Spent 6 weeks trying to haul her stuff here, sell it, whatever. I finally just had to turn the apartment over with everything left in it--clothes, furniture, most all. They just backed a dumptrump up and threw perfectly good stuff into the landfill. That hurt me.
Now my house I was trying to declutter with all my crap is dangerous to walk through and I needed back surgery so now I am stuck with all this chaos that causes chaos in my head. A huge yard I can't take care of now due to the back. No money to hire people. A house mom left me--well, she had no will, so I spent wks studying probate law to try to do it myself. The house is not in my name yet, I don't have the bank accts she left. Taxes are unpaid because I can't get to her accts yet. Being tagged by the city for high grass. Just a grand finale it seems of a miserable life. Have no idea what to do with all this stuff of hers and now dealing with this health of mine. Just unbelievable. I do not have money for any of this. Just deflated and hopless.

Good to know you had a good outcome with the size of yours. I am reading all these ppl who have smaller ones than us with so many problems. It is just overwhelming. I have been in shock now for 2 months I think between mom's death, what she did by leaving no will and now this.

thanks for sharing that with me. Julie

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@julie67 Keep in mind that you are on a lung cancer support group. My youngest brother had multiple nodules monitored for years until the doctors got tired of nothing happening. Believe me, if your doctors become convinced you have lung cancer, you'll know it because things will happen very fast. I call it "The Whirlwind".

But I was diagnosed 6 years ago, and I'm still here, working full-time, walking daily, exercising, gardening, etc.. For the most part, I can't even tell that I have cancer, and most people I meet, including my neighbors, are shocked to learn that I have Stage 4 lung cancer.

I'm originally from the Midwest. I've always said that a characteristic of people from the Midwest is that we don't worry about stuff that hasn't happened.

It does sound like you have a lot on your plate. Depending on where you live, some lawn maintenance companies, churches, and other organizations will come to take care of your lawn. Look around. This is the time to ask for favors from friends, relatives, neighbors, or anyone you know. Our neighbor lives alone and started freaking out that she couldn't keep up with her house. My wife isn't working right now, so she takes our neighbor to her doctor appointments, cleans her house, does her laundry, cooks some meals for her, and sometimes, just hangs out with her. Everyone needs help sometimes, and most people are nice.

If you don't have anyone to help you with the clutter, start with one small corner of one room and straighten that up without moving the stuff somewhere else. There, you've accomplished something. Then, go to the next small section.

I'm very sorry to hear about your mother. That's always hard. This is the time to be gentle with yourself.

What do you call two monkeys sharing an Amazon account?
PRIME-mates.

Why are teddy bears never hungry?
Because they're always stuffed.

Hang in there. You're stronger than you think. Keep letting us know how you're doing. Wishing you all the best.

REPLY

Not knowing how old you are I'm going to advise you contact your regional Council on Aging or, alternatively, Eldercare. https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

They have helped with a number of things around the house.

If there is a PACE (program of all inclusive care for the elderly) program near you they help with some house organizing and cleaning.

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@flusshund

@julie67 Keep in mind that you are on a lung cancer support group. My youngest brother had multiple nodules monitored for years until the doctors got tired of nothing happening. Believe me, if your doctors become convinced you have lung cancer, you'll know it because things will happen very fast. I call it "The Whirlwind".

But I was diagnosed 6 years ago, and I'm still here, working full-time, walking daily, exercising, gardening, etc.. For the most part, I can't even tell that I have cancer, and most people I meet, including my neighbors, are shocked to learn that I have Stage 4 lung cancer.

I'm originally from the Midwest. I've always said that a characteristic of people from the Midwest is that we don't worry about stuff that hasn't happened.

It does sound like you have a lot on your plate. Depending on where you live, some lawn maintenance companies, churches, and other organizations will come to take care of your lawn. Look around. This is the time to ask for favors from friends, relatives, neighbors, or anyone you know. Our neighbor lives alone and started freaking out that she couldn't keep up with her house. My wife isn't working right now, so she takes our neighbor to her doctor appointments, cleans her house, does her laundry, cooks some meals for her, and sometimes, just hangs out with her. Everyone needs help sometimes, and most people are nice.

If you don't have anyone to help you with the clutter, start with one small corner of one room and straighten that up without moving the stuff somewhere else. There, you've accomplished something. Then, go to the next small section.

I'm very sorry to hear about your mother. That's always hard. This is the time to be gentle with yourself.

What do you call two monkeys sharing an Amazon account?
PRIME-mates.

Why are teddy bears never hungry?
Because they're always stuffed.

Hang in there. You're stronger than you think. Keep letting us know how you're doing. Wishing you all the best.

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Thank you. That is the really bad part. I have nobody. Absolutely nobody. No friends, neighbors to help, family left. I had to sign up for a volunteer site where people come and help with home repairs. Still waiting. I had part of my kitchen floor cave in where I can see the basment now and a ceiling fall in with mold all over the floor. Just seems so hopeless even before Friday. Just deflated and haven't left bed. I live in Southern Indiana.

Stage 4 for 6 years? That is hopeful. I don't know what that means as I am new of course. Head is just spinning. I am going to call my doc in the morning and ask to be seen/sent to someone before my appt on the 29th. Can't even keep food down I am so stressed.

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@pb50

What city are you in Julie?

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Evansville, Indiana

REPLY
@denzie

Not knowing how old you are I'm going to advise you contact your regional Council on Aging or, alternatively, Eldercare. https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

They have helped with a number of things around the house.

If there is a PACE (program of all inclusive care for the elderly) program near you they help with some house organizing and cleaning.

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Sorry, I am 56. Thanks for that. Years ago I went into heart failure and contacted a group here in my citycalled Swirca for just light house-cleaning. Was put on a list and never called so not hopeful I can get help there and that's the only one I know of in my city. (I came out of heart failure after a few years)

REPLY

Well drats. I don't know anything about support structures in Indiana. I would start by asking your doc how you can access social support organizations that could help.

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@julie67

Thank you. That is the really bad part. I have nobody. Absolutely nobody. No friends, neighbors to help, family left. I had to sign up for a volunteer site where people come and help with home repairs. Still waiting. I had part of my kitchen floor cave in where I can see the basment now and a ceiling fall in with mold all over the floor. Just seems so hopeless even before Friday. Just deflated and haven't left bed. I live in Southern Indiana.

Stage 4 for 6 years? That is hopeful. I don't know what that means as I am new of course. Head is just spinning. I am going to call my doc in the morning and ask to be seen/sent to someone before my appt on the 29th. Can't even keep food down I am so stressed.

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Julie,

I was first diagnosed 6 years ago. It metastasized to my brain 2 years later, so I've only been Stage 4 for 3 and a half years. Stage 4 means the lung cancer has traveled to another organ.

While I know people all across the country, unfortunately, nobody near southern Indiana. Keep talking with your Oncologist. Let him know about your home situation, as doctors frequently have connections in the local community. I wish you all the best.

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@julie67

I see my pulmonologist on May 29 to discuss the scan. I have no idea what he plans next. Terrified. thank you

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I hope you can get in sooner. If not keep us posted. All the unknown is the scariest part- once you get clarification your mind will rest.

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@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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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?

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@vic83

Sorry about your mother. That is always something hard.
I had similar biopsy issue 2.5 years ago. Locally the Radiologist was not comfortable doing a needle biopsy because too dangerous and wouldn't get enough sample. That was a good thing. I ran to Mayo and they took it out - they told me before that 80% cancer. They have new process where they do biopsy and intervention all in one sitting. Very convenient. I had video assisted surgery with wedge resection and was driving my car a week later.

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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?

REPLY
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