How do you deal with monitoring a lung nodule and anxiety?

Posted by pedals @pedals, Nov 15, 2023

I recently had an abdominal MRI for liver cysts which showed nothing of concern. However, it did show a 10mm “questionable nodular parenchymal opacity in the lower left lobe.” It recommended seeing a pulmonologist for a ct scan. I am waiting for an appointment with a pulmonologist who I saw before for a 2 mm nodule discovered in right middle lobe 5 years ago. This was followed and deemed stable. I struggle greatly with health anxiety so now I am thinking that this 10mm nodule is lung cancer. The radiologist’s use of the word “questionable” is putting my anxiety over the top. Any thoughts?

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@pedals- Good morning, and welcome to Connect. The word questionable instills fear in the best of us. But, it's also a positive word because it encourages more testing. There are some not-so- fancy words here. Opacity is a descriptive word for how a cell looks. It doesn't indicate anything until you have further testing. Cells look hazy in scans or X-rays. But because this is a scientific explanation, a more sophisticated word has to be used.

I also have a history of recurring nodules and they are scary. And they always have to be treated and followed. This has been going on since 1981. Does this scare me? Absolutely. Anxiety can ruin your life. I sometimes think that that word is my middle name. But you would benefit you greatly if you can get even a small handle on it. And believe me, I know that it isn't easy, but you can't allow your life to be ruled by illness. That's not living, and you are alive. What skills have you used in the past that get you through horrible times prior to this?

I'll be happy to help answer any other concerns or questions. Have you begun to make a list of questions to ask your doctor?

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@merpreb

@pedals- Good morning, and welcome to Connect. The word questionable instills fear in the best of us. But, it's also a positive word because it encourages more testing. There are some not-so- fancy words here. Opacity is a descriptive word for how a cell looks. It doesn't indicate anything until you have further testing. Cells look hazy in scans or X-rays. But because this is a scientific explanation, a more sophisticated word has to be used.

I also have a history of recurring nodules and they are scary. And they always have to be treated and followed. This has been going on since 1981. Does this scare me? Absolutely. Anxiety can ruin your life. I sometimes think that that word is my middle name. But you would benefit you greatly if you can get even a small handle on it. And believe me, I know that it isn't easy, but you can't allow your life to be ruled by illness. That's not living, and you are alive. What skills have you used in the past that get you through horrible times prior to this?

I'll be happy to help answer any other concerns or questions. Have you begun to make a list of questions to ask your doctor?

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Hello,
Thank you for your reply. I do have a list of questions for the pulmonologist. I have a therapist who I am working with for other things and see her this afternoon. Waiting to hear back from pulmonologist’s office to schedule appt.

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Good day, don't know if I am at the right place for my
problem with the Henry Ford System and oncology.
Just had number 5 Pet Scan(very hard on me).
The oncology doctor only sent a brief note on my chart to say I was stable.
Feel that someone should go over this with me as I am not familiar with all other terminology. I feel that I am entitled to a better explanation of my Pet Scan
I sent a request for greater detail on the nodules in my lungs a week ago, but there was no response. Today, I asked my oncologist to speak with the radiologist regarding the nodules in my lungs.

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Thanks for sharing about this experience and sorry you're dealing with the anxiety that comes with it. Many more people are having lung nodules found these days because of CT scans. Once you see a pulmonologist, they will likely call for another CT scan in the future. They will likely use better imaging techniques designed to focus on lung nodules. They will also look at the type of nodule seen like the shape, opacity, calcifications, etc. They will also learn more about your risk factors like smoking, exposure to environmental factors like radon or asbestos, and family history. All of these items play a role in an ultimate diagnosis. Research shows that only a small number of nodules seen on CT scans are actually malignant or related to a disease process. In the meantime it's hard to not think or worry about such things. Hang in there, stay distracted, seek counseling, ask lots of questions, etc.

I had a 9mm nodule found on a CT scan done for something else last January. Had another CT scan done 3 months later as they want to follow the nodule specifically looking for growth as rapid growth is more typical of malignancy, infection, or inflammation. That second scan appeared to show that the nodule grew so they sent me to a pulmonologist who called for third scan in another three months. In the meantime, I started coughing which has been going on for 4 months now and they put me on Symbicort inhaler. Because of the growth and symptoms, the pulmonologist finally said he wanted to biopsy it so I have a 3D robotic bronchscopy scheduled in 2 weeks. He thinks it's a non TB infection but wants to rule out malignancy or inflammation because I also have rheumatoid arthritis. Has it been stressful? Yes, to say the least. But I trust the doctor because he's very experienced and leads the interventional pumonology group at a well known medical school.

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@millard

Good day, don't know if I am at the right place for my
problem with the Henry Ford System and oncology.
Just had number 5 Pet Scan(very hard on me).
The oncology doctor only sent a brief note on my chart to say I was stable.
Feel that someone should go over this with me as I am not familiar with all other terminology. I feel that I am entitled to a better explanation of my Pet Scan
I sent a request for greater detail on the nodules in my lungs a week ago, but there was no response. Today, I asked my oncologist to speak with the radiologist regarding the nodules in my lungs.

Jump to this post

Hi @millard, Stable sounds good!, but I would want more detail too. It can be frustrating to not get the information that we need and deserve. Unfortunately, many health care sites are very busy and short staffed. I'm glad that you reached back out and asked your oncologist for more info. Keep calling if you don't hear back. Do you have access to the radiologist report through a patient portal?

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@lls8000

Hi @millard, Stable sounds good!, but I would want more detail too. It can be frustrating to not get the information that we need and deserve. Unfortunately, many health care sites are very busy and short staffed. I'm glad that you reached back out and asked your oncologist for more info. Keep calling if you don't hear back. Do you have access to the radiologist report through a patient portal?

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Hi, and thank you for your support.
I feel that I am so alone in my efforts to be treated properly.
Yes, to your question about having the radiologist report. However, I don't understand so much of it.
And no mention of nodules in my lungs. And where the cancer was found, is it gone?
My next step is to reach out to my Primary Care Doctor if my oncologist does not respond to me.

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@millard

Hi, and thank you for your support.
I feel that I am so alone in my efforts to be treated properly.
Yes, to your question about having the radiologist report. However, I don't understand so much of it.
And no mention of nodules in my lungs. And where the cancer was found, is it gone?
My next step is to reach out to my Primary Care Doctor if my oncologist does not respond to me.

Jump to this post

None of us understand in the begininning....however continue searching the terms, it is a learning process like for all things. One just has to keep trying and then things do become clearer. Perhaps you have someone who can help you. It helps to read several different articles on same subject, gives perspective.

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@millard

Good day, don't know if I am at the right place for my
problem with the Henry Ford System and oncology.
Just had number 5 Pet Scan(very hard on me).
The oncology doctor only sent a brief note on my chart to say I was stable.
Feel that someone should go over this with me as I am not familiar with all other terminology. I feel that I am entitled to a better explanation of my Pet Scan
I sent a request for greater detail on the nodules in my lungs a week ago, but there was no response. Today, I asked my oncologist to speak with the radiologist regarding the nodules in my lungs.

Jump to this post

Good morning, @millard. You definitely should have had the results of your PET by now. Did the nurse at your doctor's office give you access to a patient portal?

But what matters more is why you have had five PET scans. Is this over a period of time or for a more recent problem?

This might help
https://connect.mayoclinic.org/event/sisters-newly-diagnosed-breast-cancer-support-group-7/

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@merpreb

Good morning, @millard. You definitely should have had the results of your PET by now. Did the nurse at your doctor's office give you access to a patient portal?

But what matters more is why you have had five PET scans. Is this over a period of time or for a more recent problem?

This might help
https://connect.mayoclinic.org/event/sisters-newly-diagnosed-breast-cancer-support-group-7/

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Yes, we have what is called my chart, where you can ask your doctor for information and get prescriptions refilled, etc.
This is where I am asking my doctor to let me know about the nodules in my lungs caused from
MBCancer.
The doctor wants every three months a Pet scan.
The last one, I asked her if I could go every four to six months.
She agreed to 4 months for the pet scans.
I have now sent two requests to have the radiologist provide the information on my nodules.
So far, there has been no response from her office.
Tomorrow, I will ask her nurse why she is not getting back to me.
I have never had any doctor ignoring my request up until now.

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@millard

Yes, we have what is called my chart, where you can ask your doctor for information and get prescriptions refilled, etc.
This is where I am asking my doctor to let me know about the nodules in my lungs caused from
MBCancer.
The doctor wants every three months a Pet scan.
The last one, I asked her if I could go every four to six months.
She agreed to 4 months for the pet scans.
I have now sent two requests to have the radiologist provide the information on my nodules.
So far, there has been no response from her office.
Tomorrow, I will ask her nurse why she is not getting back to me.
I have never had any doctor ignoring my request up until now.

Jump to this post

@millard, Keep trying. There may be communication going on behind the scenes. The radiologist may not contact you (my experience is that they don't generally talk to patients, but different health systems may work differently). The radiologist may be communicating with your oncologist. I would continue to request more info from the oncologist's nurse, or whoever you can. And you're right to feel that this shouldn't be this hard.

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