Hi all, I'm new to the forum so bear with me!
Last spring, my PFT that showed a mild restriction with normal diffusion. I have Sjogren's Syndrome and doctor assumed interstitial lung disease and referred me for high-res CT scan and follow up with pulmonologist.
CT scan came back with pattern of multiple nodules with random distribution, but also noted three separate nodules - 5 mm in righter lower lobe, 4 mm in right upper lobe, and 5 mm in left lower lobe and radiologist suggested "follow up would be prudent to exclude neoplasm"
Meantime, I had an opportunity to finally get into MGH. I followed up with pulmonologist there, who recommended a repeat scan at what would be 4 months from original CT scan.
Repeat scan (with barium) showed nodules still there and suggested sarcoidosis. Other nodules remained "stable" and radiologist recommended transbronchial biopsy.
Pulmonologist said that the 5 mm nodule was actually a subsolid ground glass nodule, which is not mentioned in either report. He said he is not ruling out sarcoidosis, but also said possible LIP - Lymphocytic interstitial pneumonia - and, of course, keeping a watchful eye for cancer. He said it's too soon to biopsy and that I shouldn't be worried about anything. But, he did schedule me for another ct scan in just 6 months.
Of course, I did some more research online when I got home. I can't find anything supporting ct scan at 4 months and again in another 6 months. Everything I have read says that if the nodule is stable and at 5 mm, another ct scan should be performed in a year. But, then again, it's difficult to get a lot of information RE subsolid protocol esp. nodules at exactly 5 mm.
It would seem to me that there are other tests beside CT scan if concern is headed to sarcoidosis or LIP...? Would these three nodules be considered "solitary" nodules, even in the presence of other pattern? Is six months appropriate time frame for another CT? What other questions should I be asking?
Thank you!
Reply # - December 11, 2016, 06:47 PM
Hi ccphoto,
Hi ccphoto,
Welcome to Grace. Our specialty is cancer management and don't have expertise in diagnosis. A pulmonologist would be in a better position to make recommendations for you. There are no specific guidelines as to when to scan while following lung nodules. It depends on what being watched and who's doing the watching. 3,6 and 12 months are pretty standard. Since you have a couple of things going on the shorter time frame sounds appropriate. A 5mm nodule is too small to biopsy and if it stays that size it more than likely won't do any harm. The smallest most radiologist try to biopsy a lung nodule is 1cm. Unless a nodule is pressing on structures around the lung a nodule can grow to several cm before symptoms. You are in very good hands at MGH and we couldn't suggest better from here.
I hope this helps.
All best,
Janine
Reply # - December 11, 2016, 06:59 PM
Hi Janine, Thank you for your
Hi Janine, Thank you for your prompt reply! I understand you can't diagnose...I just wasn't sure of protocols. I had to limit my post, but I should note that I did have symptoms - shortness of breath, coughing for more than three months, and coughing up blood - which is why I had the testing to begin with. I have had a plethora of imaging on top of the ct scans, so I guess I'm concerned that too much ct scanning would do more harm than good. It's good to know you think 3, 6 and 12 month is standard and not high alert. I do feel I am in the best hands at MGH. I've lost too many people to cancer in the past couple of years, so I just want to be as prepared as possible I guess!
Thank you, again. I hope you have a wonderful holiday season, Janine!
Reply # - December 11, 2016, 07:39 PM
Thanks, I hope your holiday
Thanks, I hope your holiday season is wonderful too!
I meant that our oncology faculty and our focus of info is not on diagnosing not that we don't diagnose, however we don't do that either. I'm not surprised to know you've had difficulty with coughing and breathing with the ground glass/interstitial issues. As a matter of fact the ground glass/interstitial/LIP on top of the solitary nodules combo is probably the reason why they want to keep a close eye on you. While unlikely it's not out of the question this processs represents cancer. There's really not much of a chance to do more harm from the ct scans. We have this blog post on the subject. http://cancergrace.org/cancer-101/2012/06/21/radiation-exposure-from-me…
All best,
Janine
Reply # - December 12, 2016, 06:57 AM
That's a very helpful link -
That's a very helpful link - thanks again!