Jason 74 Posted February 4, 2022 Share Posted February 4, 2022 Hi, I have been reading up between the internet and on this forum trying to get as much information as possible about a couple nodules that were found on my left lower lung. Its been a long slow process of tests and delays due to covid. I had a CT scan which showed 2 nodules close to one another with one a little over 1CM and the other 6mm. They are spiculated which obviously is worrisome. I was then sent for a PET scan which showed high activity in my mediastinal and hilar lymph nodes, and minor activity in my 2 nodules. The nodules had an SUV max of 5.8 and my lymph nodes were a 16. My pulmonary doctor thought it looked more like and infection in my lymph nodes then lung cancer so he had me do an infectious blood marker test which came back positive for a fungal infection. He felt my activity was all due to the infection. But did perform a bronochscopy of my lungs. He did a biopsy of my lymph nodes which came back benign, but didnt do a biospy of my nodules due to the risks they presented due to their location. He said they were in a bad spot and I had a greater risk of having a collapsed lung. Instead he ordered a blood marker NPV test through Biodesix INC for cancer markers. The test came back with a very low risk of cancer of less then 5 percent. It said it was a high probability of being benign. But it did say it couldnt rule cancer out. They want to keep a watch on the spots to make sure they dont grow. The doctors said for me to come back in 3 months for another CT scan for a check up. The fact that they are spiculated and cancer wasnt 100% ruled out just makes me uneasy. The doctors feel my risk factors are very low. I am 47 in good health and a non smoker.... I know to some this may seem silly but does getting a second opinion make sense? If this might be cancer waiting 3 more months just makes me uneasy. I appreciate anyone who reads this and takes the time to respond. Best regards Jason Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 4, 2022 Share Posted February 4, 2022 Jason, Welcome here. Unresolved spiculated lung nodules, 47, good health, and concern, I completely understand. Learning your PET result adds apprehension and perhaps confusion. The benign lymph node biopsy is comforting, but might your lymph node SUV be the result of an infection. And might your lung nodules be lung cancer? Any SUV above 4 is an indicator of metastatic disease but infections can also generate high uptake. Diagnostic grade blood biopsies are medically down the road so I'd be inclined to disregard the lack of cancer markers. Lung nodules occur for many reasons and most of them are not cancer. Here is my go to resource on pulmonary nodules. But your nodules are deep in the lung and distant from mediastinal and hiller nodes. Of course, I'm not an expert on lymphatic system connections, but all this is to say I share your concern. Your nodules are small. Perhaps the 1 cm nodule could be a target for a needle biopsy, but there is a lot of pulmonary plumbing in that area making a needle biopsy tricky. Waiting 3 months is maddening, but it is also a pretty standard situation in our community. I suggest adding a medical oncologist to your team, and let this doctor review the test results. I'd ask your medical oncologist if a second PET can be administered after your infection is resolved. That might remove your concern. Again, welcome here and I hope your time with us is short based on a definitive nodule determination. Stay the course. Tom Jason 74 and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted February 4, 2022 Share Posted February 4, 2022 Hi Jason, Tom has done a great job of summarizing information for you already so I'll just welcome you to the site and tell you that the "3 month wait" is something many of us went through (including me) for a variety of reasons. I'll join Tom is hoping that your tests are negative for cancer and you won't need our support. But if you do, then we'll be here to go on the journey with you. Lou Jason 74 and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted February 4, 2022 Share Posted February 4, 2022 Hi Jason, you're starting off with a lot of uncertainty and that's really hard to cope with. But as Tom notes, your nodules are very small, and he's given you lots of useful information. I also agree that this is a good time to find a medical oncologist. My own experience with nodules is just surveillance. After chemo, radiation and targeted therapy for my Stage IIIB adenocarcinoma, I still have a 5/6 mm nodule in my upper right lung that hasn't changed in over 2 years and it's too small for PET characterization (which means they can't see SUV uptake). My oncologist has been watching it, but after all this time and treatment it hasn't changed. It's very common to worry between scans, and especially when you don't know what you're dealing with. Try to take things one step at a time and don't get ahead of yourself. If you do get a diagnosis of lung cancer, there are a lot of treatment options these days that can make you a survivor. Hang in there and we are here for you. Tom Galli, Jason 74 and LouT 3 Quote Link to comment Share on other sites More sharing options...
Jason 74 Posted February 4, 2022 Author Share Posted February 4, 2022 Thank you all so much for the warm welcome and responses! I appreciate the feed back and advice. This whole process started back in the beginning of December and it’s led to my head spinning and a few restless nights. Definitely going to get in touch with an oncologist for them to review scans etc and see what they think. This site is very educational and helpful and a great support system! So happy to have found it. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted February 6, 2022 Share Posted February 6, 2022 Hi Jason and welcome! You've already got some good info from some of our all-stars😊. I have a couple of questions for you. Was the fungal infection identified? Are you getting treatment for it? Just curious, since I have lung scarring probably from valley fever, which is caused by a fungus., It's unclear when I had the infection, since I was never diagnosed with it. Keep in touch. Bridget O LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Jason 74 Posted February 6, 2022 Author Share Posted February 6, 2022 6 hours ago, BridgetO said: Hi Jason and welcome! You've already got some good info from some of our all-stars😊. I have a couple of questions for you. Was the fungal infection identified? Are you getting treatment for it? Just curious, since I have lung scarring probably from valley fever, which is caused by a fungus., It's unclear when I had the infection, since I was never diagnosed with it. Keep in touch. Bridget O Hi Bridget O and thank you for the welcome! The pulmonary doctor said it was a flip flop fungal infection. The information I have been able to find about it was that its symptoms tend to mirror lung cancer. Honestly my whole situation started around Halloween where I had body aches, chills, what felt like pressure on my chest and the worst night sweats I had ever experienced in my life. I had the chest discomfort and body aches continue well over 2 weeks after the chills and night sweats which is what caused me to go see my family doctor. I did ask if they were gonna prescribe anything for the infection and they said no, it clears up on its own. And even doing my own research from what I can find, this does tend to clear up on its own with no medication. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Della Posted February 6, 2022 Share Posted February 6, 2022 Jason, I am no expert like the others on here but in my reading I came across this article and thought it may be of interest to you. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5698614/ I too have a second nodule with higher uptake than the original spiculated one but it doesn’t seem to be a lymph node. The doc remarked it was odd. If I notice anything on here it is we are all looking for certainty which is hard to come by. Take care Tom Galli, Jason 74 and LouT 3 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted February 6, 2022 Share Posted February 6, 2022 Hi Jason, How interesting! I've never heard of flip-flop fungal infection, so I read some articles. I've learned something new! Jason 74, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Jason 74 Posted February 6, 2022 Author Share Posted February 6, 2022 2 hours ago, Della said: Jason, I am no expert like the others on here but in my reading I came across this article and thought it may be of interest to you. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5698614/ I too have a second nodule with higher uptake than the original spiculated one but it doesn’t seem to be a lymph node. The doc remarked it was odd. If I notice anything on here it is we are all looking for certainty which is hard to come by. Take care Thank you Della! Essentially what this article on FFF is saying is what my pulmonary doctor from University of Chicago Medicine is doing. Makes me feel a little better. But still want to talk with a oncologist like Lou and Tom have suggested. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Della Posted February 7, 2022 Share Posted February 7, 2022 I totally agree. I also just received my Nodify results which, like yours, came back with 1% chance of malignancy. I’m not putting much stock in them but it’s nice to see a large medical center like U Chicago is using them also. LouT and Jason 74 2 Quote Link to comment Share on other sites More sharing options...
Gillianmillian Posted April 1, 2023 Share Posted April 1, 2023 On 2/4/2022 at 1:31 AM, Jason 74 said: Hi, I have been reading up between the internet and on this forum trying to get as much information as possible about a couple nodules that were found on my left lower lung. Its been a long slow process of tests and delays due to covid. I had a CT scan which showed 2 nodules close to one another with one a little over 1CM and the other 6mm. They are spiculated which obviously is worrisome. I was then sent for a PET scan which showed high activity in my mediastinal and hilar lymph nodes, and minor activity in my 2 nodules. The nodules had an SUV max of 5.8 and my lymph nodes were a 16. My pulmonary doctor thought it looked more like and infection in my lymph nodes then lung cancer so he had me do an infectious blood marker test which came back positive for a fungal infection. He felt my activity was all due to the infection. But did perform a bronochscopy of my lungs. He did a biopsy of my lymph nodes which came back benign, but didnt do a biospy of my nodules due to the risks they presented due to their location. He said they were in a bad spot and I had a greater risk of having a collapsed lung. Instead he ordered a blood marker NPV test through Biodesix INC for cancer markers. The test came back with a very low risk of cancer of less then 5 percent. It said it was a high probability of being benign. But it did say it couldnt rule cancer out. They want to keep a watch on the spots to make sure they dont grow. The doctors said for me to come back in 3 months for another CT scan for a check up. The fact that they are spiculated and cancer wasnt 100% ruled out just makes me uneasy. The doctors feel my risk factors are very low. I am 47 in good health and a non smoker.... I know to some this may seem silly but does getting a second opinion make sense? If this might be cancer waiting 3 more months just makes me uneasy. I appreciate anyone who reads this and takes the time to respond. Best regards Jason Hello, did you find out the cause of your spiculated lung nodules? what was your diagnosis? hope you are doing well. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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