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Old 12-06-2003, 07:36 AM   #1
Join Date: Dec 2003
Location: Winston-Salem, North Carolina
Posts: 2
judy16 HB User
Pulmonary cysts and lung nodules

This is my first posting. I was just told yesterday (12/5/03) that I have cysts all throughout both lungs. On CT scan they showed up as round black circles of different sizes. They looked like black holes of nothing. I also have 2 pulmonary nodules. I also have a kidney cyst or lesion.

These are totally unexpected findings. My Orthopedic doctor was investigating right hip pain and a positive bone scan. The bone scan showed hot spots on my right hip and right 8th rib. He suspected stress fractures. Luckily they could find nothing with my hip or rib on CT, he suspects they lit up just due to a stress reaction from some bad body mechanics and coughing from a upper respiratory virus.

But unfortunately he found the pulmonary cysts, nodules and kidney cyst.
He being an Orthopaedic doctor doesn't have a clue. So now I have to schedule a CT scan of the abdomen to evaluate the kidney lesion/cyst. He suspects that's a normal finding. He's an Orthoaedic oncologist and he says the majority of patients he evaluates for cancer have a kidney cyst that is benign.
The pulmonary cysts are a mystery.

I also have to schedule an appointment with a Pulmonary specialist. I do not smoke or have any other lung problems. I do not have any symptoms like shortness of breath. I do get short of breath upon exertion, but I am extremely out of shape, do not exercise and have gained 25 lbs in the past year.

Has anyone else heard of pulmonary cysts that look like black circles? The biggest one was about the size of a quarter. The internet was not much help.

My doctor said the only way to see what's going on with the pulmonary nodules are to scan them again in several months to see if they have grown. He said they could have been there for a long time. He found one of the nodules and showed it to me on my CT scan. Our radiology department has gone digital and he could manipulate my scan on the computer. He could not find the other nodule (he had talked to the radiologist before he talked to me and this is the report he received from them).

He also had difficulty finding the kidney cyst, but we think we finally found it. There was a small shadow on my kidney that he thinks is the cyst or lesion.

Luckily I am the clinic manager for the Orthopaedic Department at a large university medical center and have access to every test and doctor known to man it seems.

I am just scared about what this means. Anyone with experience in these areas? Sorry this was so long.


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Old 12-08-2003, 12:42 AM   #2
GDT GDT is offline
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Join Date: Nov 2003
Posts: 19
Re: Pulmonary cysts and lung nodules

Have they suggested doing a PET scan for lungs to see if they "light up"? Since you say it is the size of a quarter, and since you say you have access to various tests etc., I think I'd ask for a PET if I were you instead of waiting several months. A quarter is fairly large compared to the 6 or 8 mm lung nodules that are often found. Did he say anything about the look of the nodule? Does it have smooth edges or calcification? Did you get the radiologists report? What does that say? A cyst and a nodule are separate things that I *think* most radiologists can differentiate from - A cyst being a sac with fluid and a nodule being a mass of cells or tissues. As far as kidney cysts, I'm told they are fairly normal. But the fact that you are worried and the fact that you have various organs involved, would be a reason to maybe ask for more tests now so you don't have to spend months worrying.

There is a good chance that all of these things are nothing, but I think I would still ask for a PET or more information or tests just to be safe. In fact, the 8mm lung nodule I had disappeared after a month. So whatever you have might be gone next time you look. But since you have access to facilities and doctors, I'd get more done now if I were you. You'll sleep better! Good luck and let us know.

Old 12-08-2003, 12:45 AM   #3
GDT GDT is offline
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Join Date: Nov 2003
Posts: 19
Re: Pulmonary cysts and lung nodules

P.S. I forgot to tell you to do a search on this site for Lung Nodule and you'll find a long thread about all of this. I think it's the one that's 4 pages.

Old 12-18-2003, 06:45 PM   #4
Join Date: Dec 2003
Location: Winston-Salem, North Carolina
Posts: 2
judy16 HB User
Re: Pulmonary cysts and lung nodules

Originally Posted by GDT
P.S. I forgot to tell you to do a search on this site for Lung Nodule and you'll find a long thread about all of this. I think it's the one that's 4 pages.
GDT-Thanks for the answer. One of the cysts was the size of a quarter. The two pulmonary nodules are small. One on each lower lobe. I haven't gotten an answer about the margins of the pulmonary nodules yet.
I received the results of my abdomen CT and both kidneys have a single cyst, but in different locations. So far so good.

I go see the pulmonary specialist tomorrow, 12/19/03. We'll see what he says about the multiple cysts in my lungs (about 20 diffusely throughout) and the 2 pulmonary nodules. The radiologist suggested that the cysts represented something called lymphangioleiomyomatosis. When I researched it on the internet, it sounded pretty bad.

Further diagnostic tests recommended were pulmonary function studies and a lung biopsy. Apparently there are thin walled cysts and thick walled cysts and they can represent different diseases (both bad).

I'll keep you posted.

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