Quote Originally Posted by windchime View Post
Hi Lindsey, Did you get a copy of the CT? If so how does it read? The radiologist will usually indicate what the chances are that the nodule could be cancer, TB, WG (might say inflammatory). Also, I hate to disagree with your doc regarding WG not presenting as only a single nodule, but I do. No where in anything that I've read through the years about WG's says that it only presents only as multiple nodules in the lungs or one in each lung. (This doesn't mean I'm an expert, but I would think if this were the case it would be well known.) Does this pulm doc have any experience with WG's at all? Even though your pulm sounded confident (that's their job as they wouldn't want you to think they were an idiot) doesn't mean he is. He could be reading from a book with no real life experience with WG's. Also where is the nodule located in the lung?

I would encourage you to call the Cleveland Clinic and make an appt with a specialist to get some definitive answers before having a lobectomy. That is very invasive and I'm surprised that they are unable to do a wedge biopsy. You should be able to get into the Cleveland clinic relatively quickly from what others have posted.

Also a suggestion is to get copies of all records as you go along. This will make things so much easier in the long run especially as you pick up or change doctors.

On the up side don't panic. I know that your visit didn't go as planned, but don't assume the worst. I've had reads on CT's that say "can't rule out cancer." I would be more interested in what the pathologist found and his conclusions which are based in fact not speculation. Unfortunately the only way to tel what the nodule is, is by biopsy. The question is whether or not a lobectomy is required. As my doctor recently told me "the issue is the tissue." Please get a second opinion. Best wishes and please keep us posted.
Cindy, below is my Dad's chest CT report verbatim.


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Chest CT with contrast


History: Wegener's Granulomatosis


CT of the chest was performed after injection of 100 mL of nonionic contrast.


Multiplanar imaging was obtained.


The pulmonary arteries are normal. The aorta is normal. The lung zones are well seen and there is some chronic change in the lung apices. There is a spiculated density in the posterior apical left lung. This should be further evaluated with PET scanning to be sure that this is not a malignant lesion. This is approximately 1.5 cm in size. Mediastinum is intact. No infiltrate pleural effusion or other findings are seen. There is no adenopathy.


Impression: Apical left lung spiculated density 1.5 cm in size, etiology is undetermined. Recommend PET scanning. Mild chronic lung changes.
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I honestly did not ask the pulmonologist if he has had experience with Wegener's patients. I wish so hard that I had asked. He appeared young to me (mid-40s maybe?). I think I was in such shock that he thought it to be a malignancy that I wasn't really having lucid thoughts. As a nurse, I am on my A-game with my patients, but with my Dad I was just his daughter. All I seemed to hear was "malignancy...Wegener's doesn't present with a solitary nodule...Wegener's is always present in both lungs...does not look like an infection...PET scan...removing left upper lung..."


As for Cleveland Clinic, he told me he wants to wait and see what the PET scan shows and then he would consider going forward with an appointment there. He says he is still feeling overwhelmed with what the pulmonologist said yesterday, so he does not want to plan that trip right away. I guess if I were facing the possible diagnosis of cancer, that would be my top priority as well. I'm hoping and praying constantly that this isn't his case though, but the pulmonologist seemed so sure...