1. < Cancer: Managing Symptoms

5th Opinion??!! Non small cell lung cancer - no biopsy

Posted by etb2 @etb2, May 28 6:34am

Ok...I was told my 1.1. cm. Nodule was too deep and close to blood vessels to biopsy. First an oncologist wanted SBRT I have Polycethemia and he said I might begin to bleed in a year or two. Altho I have Polycethemis, when I have surgery or a small cut, I bleed to the point of hemmorhage. This hadn't been documented well in my records, which were part of a massive health system data breeh. My oncologist had said to wait and have another CT in 6 months. If it grew we might have to consider radiation. It didn't grow but he wants the radiation. I don't understand and suddenly he's not being very nice. What do I do. Will Mayo do Telehealth?

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gently | @gently | May 28 7:13am

One thing is certain, I'd run from the doctor who is suddenly not nice. It is an inexcusable form of pressure.
A lung nodule of 2-6 mm has a 1% or lower chance of being cancerous. We can suspect that yours is not cancerous. There are many other things that can cause nodules in the lungs. Anyway yours is not growing.

Some physicians at Mayo will engage by telehealth. Some will not. While I suspect that you would be screened out by the intake coodinator as not even suspect for cancer, I can recommend Dr Yu in Arizona. If your nodule ever grows I would suggest a liquid biopsy and that you check proton radiation.
Cheers

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1 reply
denzie | @denzie | May 28 7:51am

Has the appearance changed somehow? If it developed spiculations that might be a reason for the mind change.

Call the doctor or his nurse and ask for the reason behind the mind change.

Do get another opinion and fire the doctor you have. Do you have a targetable mutation? If yes, the second opinion should come from a Dr who specializes in research on that biomarker.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 28 9:24am

Hi @etb2, I went back and read through your previous comments. Let me know if I've got this correct. You have stage 4 chronic kidney disease (CKD) as well as polycythemia vera (PV). PV causes your bone marrow to make too many red blood cells. These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots.

An imaging studies (CT scan) found a 1.1 cm nodule in your lung which has not grown. However, you have been diagnosed with possible stage 1A non small lung cancer. Because patients with PV have increased risk for bleeding complications after surgery, you have not had a biopsy to confirm the diagnosis.

Do I have that right so far?

That's a lot to take in. I can imagine you are scared and confused. Your questions deserve answers.

You asked about getting a second opinion at Mayo Clinic. If you would like to explore that possibility, here's how to get started: http://mayocl.in/1mtmR63

Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance. Virtual care is available for out-of-state patients IF the provider you are seeing is licensed in the state where you live. When submitting your request, let them know that you are interested in a virtual second opinion.

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1 reply
etb2 | @etb2 | May 28 10:33am
In reply to @colleenyoung "Hi @etb2, I went back and read through your previous comments. Let me know if I've..." + (show)
@colleenyoung

Hi @etb2, I went back and read through your previous comments. Let me know if I've got this correct. You have stage 4 chronic kidney disease (CKD) as well as polycythemia vera (PV). PV causes your bone marrow to make too many red blood cells. These excess cells thicken your blood, slowing its flow, which may cause serious problems, such as blood clots.

An imaging studies (CT scan) found a 1.1 cm nodule in your lung which has not grown. However, you have been diagnosed with possible stage 1A non small lung cancer. Because patients with PV have increased risk for bleeding complications after surgery, you have not had a biopsy to confirm the diagnosis.

Do I have that right so far?

That's a lot to take in. I can imagine you are scared and confused. Your questions deserve answers.

You asked about getting a second opinion at Mayo Clinic. If you would like to explore that possibility, here's how to get started: http://mayocl.in/1mtmR63

Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance. Virtual care is available for out-of-state patients IF the provider you are seeing is licensed in the state where you live. When submitting your request, let them know that you are interested in a virtual second opinion.

Jump to this post

THANK YOU SOOOO MUCH!!!I will definitely contact them today. Although a pulmonologist told me TWENTY years ago that the doctors had "not yet found a reason" for my PV...I have been told it is NOT PV...JUST P!! LOL Because my JAK2 is always negative. I'm also told I got it from smoking. I asked my oncologist if tests were ever run to see if I had some OTHER type of blood disease. When he said no, I asked that they be run so he's sending me the scripts. Again Thank you!

REPLY
etb2 | @etb2 | May 28 10:44am
In reply to @gently "One thing is certain, I'd run from the doctor who is suddenly not nice. It is..." + (show)
@gently

One thing is certain, I'd run from the doctor who is suddenly not nice. It is an inexcusable form of pressure.
A lung nodule of 2-6 mm has a 1% or lower chance of being cancerous. We can suspect that yours is not cancerous. There are many other things that can cause nodules in the lungs. Anyway yours is not growing.

Some physicians at Mayo will engage by telehealth. Some will not. While I suspect that you would be screened out by the intake coodinator as not even suspect for cancer, I can recommend Dr Yu in Arizona. If your nodule ever grows I would suggest a liquid biopsy and that you check proton radiation.
Cheers

Jump to this post

Thank you. VERY MUCH!; RHE NODULE IS 1,1. CM. and I AM going to ask for a liquid biopsy. And also check with Dr. Yu...Thanks again.

REPLY
etb2 | @etb2 | May 28 10:50am
In reply to @denzie "Has the appearance changed somehow? If it developed spiculations that might be a reason for the..." + (show)
@denzie

Has the appearance changed somehow? If it developed spiculations that might be a reason for the mind change.

Call the doctor or his nurse and ask for the reason behind the mind change.

Do get another opinion and fire the doctor you have. Do you have a targetable mutation? If yes, the second opinion should come from a Dr who specializes in research on that biomarker.

Jump to this post

Hi! It has been spiculated since the beginning of it's showing up and I don't know what a targetable mutation is...I'm learning SO much here. Thank you.,,,

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