paddikake Posted August 12 Share Posted August 12 I recently had a PET scan that showed two 1cm nodules and lymph nodes that lit up. ( 5.3 ) The doctor has had me wait 3 months to do another CT. I am very anxious about this test. And the fact that the lymph nodes lit up. Has anyone had this experience? I’m very frightened. Tom Galli, Livin Life and LouT 3 Quote Link to comment Share on other sites More sharing options...
Livin Life Posted August 12 Share Posted August 12 Welcome, paddikake! Sorry you need to be here though.... So I may have more questions than comments at this point? Did you have a CT scan before the PET scan? Assuming so since you mentioned "another" CT.... So CT, then PET and your doc wants you to wait 3 months for another CT? Is the doc a PCP/GP, pulm? I hope you have a pulm on your team at this point. So what I've learned is that even inflammatory conditions can lead to uptake on PET. I do not know if SUV of 5.3 fits inflammation? I just don't know one way or the other. So that is likely why they want to wait. A month may not be long enough for areas to return to "normal" size if inflammation/infection. It's persistent areas that become more concerning.... three months starts bordering on that. I read many covid lung nodules went away after three months, even higher percentage after 6 and most gone by 9 months or a year - can't remember the %'s though. The waiting is maddening though may be necessary. 1 cm is still small - used to be they wouldn't even biopsy until something hits the 1 cm size. Even after three months, if cancer, it would still be early and small in the great majority of cases... Others will come along who may have more specific facts/numbers on that. Hang in there as best you can.... spent time with people you love, appreciate and enjoy. Do things relaxing and/or enjoyable.... The worry will be worse the first 2 weeks or so and should improve a bit and then worse again as scan time nears. That's true for me anyways... I can usually get on with things in between even though it's still on my mind a lot.... Btw, I had a scan last Sept, another in Dec and then last one in July 2024. Still don't know anything b/c it's been "stable." Meet with pulm soon. LouT 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted August 13 Share Posted August 13 Most lung nodules are benign (90%) . While 5 may be high, I've personally not had a malignant lesion anywhere close to that low. I regularly, like every PET in the last 3 years has had biopsy confirmed benign lesions of 6. So often I no longer worry about them unless the look funny to the wife. Anything in n the lung that's FDG avid is going to be suspicious but not necessarily malignant. All that said. A PET scan if fairly expensive and not part of any regular check up. The ordering physician had to suspect cancer or a heart problem. There's zero chance I would wait for another scan. I get a biopsy ASAP. In lung cancer early intervention cancer is the best chance at a cure or long term survival. While treatments have made great strides in the past few years It's still better when caught earlier. Why did you get a PET? LouT and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
paddikake Posted August 13 Author Share Posted August 13 Thank you guys so much for responding. I will try and answer your questions as best I can. My primary sent me for an evaluation CT because I have emphysema. It showed spots that needed further evaluation and I was sent for the PET. There were the two small nodules that lit up on my right lung as well as multiple spots to small to measure. Both lymph nodes lit up and are slightly enlarged. The pulmonologist recommended another CT in 3 months (sept4) to see if anything changes. I don’t know if the wait and see approach is in my best interest or insurance protocol. I have no cough, only some shortness of breath. Still I worry that while I wait this stuff could be growing out of control. The anxiety of not knowing is nearly unbearable. I of course have studied everything I can find on lung cancer ( which is how I found you guys ) I just am terrified. Scared it is cancer. Afraid I am not tough enough to deal with all that would mean. Tom Galli and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
paddikake Posted August 13 Author Share Posted August 13 18 hours ago, Livin Life said: Welcome, paddikake! Sorry you need to be here though.... So I may have more questions than comments at this point? Did you have a CT scan before the PET scan? Assuming so since you mentioned "another" CT.... So CT, then PET and your doc wants you to wait 3 months for another CT? Is the doc a PCP/GP, pulm? I hope you have a pulm on your team at this point. So what I've learned is that even inflammatory conditions can lead to uptake on PET. I do not know if SUV of 5.3 fits inflammation? I just don't know one way or the other. So that is likely why they want to wait. A month may not be long enough for areas to return to "normal" size if inflammation/infection. It's persistent areas that become more concerning.... three months starts bordering on that. I read many covid lung nodules went away after three months, even higher percentage after 6 and most gone by 9 months or a year - can't remember the %'s though. The waiting is maddening though may be necessary. 1 cm is still small - used to be they wouldn't even biopsy until something hits the 1 cm size. Even after three months, if cancer, it would still be early and small in the great majority of cases... Others will come along who may have more specific facts/numbers on that. Hang in there as best you can.... spent time with people you love, appreciate and enjoy. Do things relaxing and/or enjoyable.... The worry will be worse the first 2 weeks or so and should improve a bit and then worse again as scan time nears. That's true for me anyways... I can usually get on with things in between even though it's still on my mind a lot.... Btw, I had a scan last Sept, another in Dec and then last one in July 2024. Still don't know anything b/c it's been "stable." Meet with pulm soon. Thank you so much for the response. For nearly 3 months it’s been me and google. The not knowing is so hard. I don’t imagine you ever get used to that. I responded to your and others questions below. Thanks so much for being there. Livin Life and LouT 2 Quote Link to comment Share on other sites More sharing options...
Sallysh Posted August 13 Share Posted August 13 Go to an oncologist for further evaluation. My pulmonologist wanted too long and I ended up with 3b, now stage 4. LouT 1 Quote Link to comment Share on other sites More sharing options...
paddikake Posted August 13 Author Share Posted August 13 3 minutes ago, Sallysh said: Go to an oncologist for further evaluation. My pulmonologist wanted too long and I ended up with 3b, now stage 4. I don’t know how that even works with my insurance. I can’t see anyone without a referral. I can’t afford a specialist. But thank you for the advice. LouT 1 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted August 14 Share Posted August 14 Insurance is going to cover it. Oncologist are required to be covered by Obama care. Get yourself to Siteman if at all possible. It's local and one of the best in the country. You need a biopsy ASAP. Waiting 3 months is beyond me but I guess there could be features that make it less likely to be malignant. Very early stage cancer almost never have symptoms and are usually found because of something else. Don't let the lack of symptoms get your guard down. Be on these people non stop until you get a definitive diagnosis. I was stage IV and had my first symptoms the day I was to get a chemo port installed. I literally skipped into the hospital and woke up with an entire tumor board in my ICU room. No port and a Craniotomy scheduled for the next morning. My first symptoms were neurological. I lost my vision to the left in the hospital parking garage. Here's the insurance Siteman accepts. They are part of Washington University. https://physicians.wustl.edu/for-patients/health-insurance/all-accepted-health-insurance-plans/ I hope this all turns out to be for nothing. But you can't really Afford to wait too long for answers. LouT and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
Livin Life Posted August 15 Share Posted August 15 I would hope your PCP/GP would be willing to refer you or at the very least order a follow-up scan after one month instead of 3. I know someone who's pulm just did that and they do not expect theirs to be cancer.... There are options..... LouT 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted August 15 Share Posted August 15 No matter what happens, you will feel frightened. But, and please hear this: if we can get through it, you can too. As you learn more, you will be able better to make sure you get the best care for your situation. I agree--I would want a referral to an oncologist who specializes in lung cancer. I suggest you call the Lungevity Helpline for assistance, ASAP. 844-360-5864 I, too, would want a CT scan with contrast and a biopsy of those lymph nodes. That was the only tissue my doctor could get-- the tumor was too hard to reach-- and that tissue gave us the info necessary. Livin Life, LouT and tgif i guess 3 Quote Link to comment Share on other sites More sharing options...
tgif i guess Posted August 16 Share Posted August 16 18 hours ago, Karen_L said: No matter what happens, you will feel frightened. But, and please hear this: if we can get through it, you can too. As you learn more, you will be able better to make sure you get the best care for your situation. you will come to know this is true maybe not right now, but it will happen LouT and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
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