MBCB Posted February 18, 2021 Posted February 18, 2021 I had a pulmonary nodule identified incidentally on my lower right lobe that started out at 14mm x 5mm x 6mm. In two months in grew to 14mm x 14mm. Another nodule was also found that was 5mm x 10mm. On the next scan three months later it shrunk to 11mm x 7mm x 13mm and there was only one nodule. On a scan seven months after that it was down to 8mm x 5mm. Five months after that there was no change. Fast forward to 11 months later and I had a cardiac CT where a 20mm nodule in the same spot was picked up. Waiting for a pulmonology consult but is it possible this is cancer after shrinking and being stable on three consecutive scans? Very concerned that it has now more than doubled in a year. On all scans, it is reported that there are no enlarged mediastinal hilar lymph nodes or other masses. No sign of spread. This has all taken place over about 2.5 years. I would note that both a large hospital-based oncologist and my pulmonologist have not recommended a PET scan. Appreciate any feedback.
TJM Posted February 18, 2021 Posted February 18, 2021 Welcome. That is a really good question and I ask that you share the feedback you get from your pulmonologist. I can give you my experience however. In 2005 a nodule was found (1.2cm, round). I was given a PET scan and the nodule did not "light" up. Or, I should say it did not light up much (2.2 SUV). My doc pronounced it as likely begnin and we agreed to check vis xray once a year. Even tho my brother had recently died from lung cancer, I was pretty ignorant and Google wasn't as powerful then. So that's what I did. Based on my medical records the last imagining I got was in 2009. I think I did get one more after that but waiting for my records. Again, I was ignorant about how medical records worked. I assumed they followed you as you changed providers. Why we sign all that HIPPA paperwork. Right? Wrong. Long story short. I essentially forgot about until September 2019 when I thought I had pneumonia. Two rounds of antibiotics later and little improvement so I mentioned the nodule and asked to have it checked. By then I was back at the provider that first spotted it 15 years ago and it is boldly printed that I had a nodule. It was on every after visit summary..but I had to suggest it. You can guess the rest. My nice little begnin nodule had grown into a 4.5 cm mass. Had a lobectomy and found out that it was Large Cell NET NSCLC. That sucked. Anyways. It is what it is but I do remember asking my first doc (guessing a pulmonologist) if cancer could grow and shrink and grow and shrink. She said cancer didnt act that way. So. Take whatever you want from my experience. I'm an Engineer, a former smoker and have lung cancer in the family history with a known nodule and I still got blindsided by that call that anyone with Lung cancer (or any cancer) will never forget. Wish you the best and I hope it turns out to be nothing (odds on your side by a lot). Peace Tom PS FWIW I would at least demand a PET scan.
LexieCat Posted February 18, 2021 Posted February 18, 2021 I'd say just about anything's possible. Apparent sizes of nodules can vary according to the equipment used for the scan, as well as the angle of the images. So it can sometimes LOOK like a nodule has shrunk (or grown) when that isn't the case. Go ahead with the pulmonology consult--if they are convinced it's not cancer, have them explain why they are so certain. Try to get a PET scan--they are extremely expensive and it might be a battle to get insurance to pay for it. And regardless of what happens, keep following the nodule with scans. Oh, you should also ask whether a biopsy is possible.
Tom Galli Posted February 19, 2021 Posted February 19, 2021 MBCB, Welcome here. I agree with Tom and Lexie. I am a lung cancer survivor but still get scanned. And these scans reveal nodules all the time. I've been suffering scans and nodules here, there and gone, then back again for 17 years. There are many reasons for lung nodules and thankfully most are not cancer. Here is my go to source explaining pulmonary nodules. 20mm or 2cm is not large. Small nodules if cancer may not reliably display uptake value during a PET scan. That is likely why your doctors steered you away from a PET scan. This explains PET scans. A biopsy however can be pretty conclusive. Here is information about biopsies typically used to diagnose lung cancer. So your situation resolves to continue to observe (CT scans, say quarterly) or a biopsy. I pray you do not have lung cancer. Stay the course. Tom
MBCB Posted February 19, 2021 Author Posted February 19, 2021 Thank you all for your quick responses. Your points look spot on and very relevant to my situation. Given the prior size and the fact that they were shrinking, the doctors didn't want to biopsy and did mention that the uptake during a PET may not be there and could even cause a false positive result. Also, they did not want to biopsy because of the location at the lower right lung and closer to the spine. It was too far for needle biopsy and would have required open surgery. Things went well the last three scans with two shrinking and one stable until the scan I had this week. Radiologist even noted this looks like an inflammatory condition or scar and volume loss on the scan report from last March in 2020. I have never smoked except for an occasional cigar but did grow up in the 70s with both parents smoking so I am sure I took in a lot of second hand smoke. Thanks again. It's a blessing that you can speak from experience and help others.
MBCB Posted February 19, 2021 Author Posted February 19, 2021 I meant to add that I had a bronchoscopy too in 2019 and they thought it may be aspergillosis but the culture was inconclusive/negative. They could not sample the spot but did a "wash" of the area to collect cells to culture.
ChiMama Posted February 19, 2021 Posted February 19, 2021 Hi MBCB and welcome. Just a note about my experience with nodules on CT - Almost every Scan I've had, the measurements were different - not by a lot, but enough that I was confused by the reports. Also there was a smaller nodule that was sometimes mentioned and sometimes not. It seems to depend on angles, who does the measuring, who reads the scan, and whether what they see seems important or not. My biggest confusion came when I had a scan that noted a "3cm mass" in my upper left lobe... The upper left lobe had been removed 5 days earlier, so that really threw me for a loop! That was eventually explained but it goes to show the importance of going over these questions and concerns with your doctor.
MBCB Posted February 19, 2021 Author Posted February 19, 2021 Thank you ChiMama. Lexie noted that as well and my own pulmonologist had said to get scans from the same imaging centers for consistency. Due to circumstances I have had three different imaging centers doing the scans now and even within the same one there have been different reading radiologists so the consistency just isn't there. My pulmonologist said he is going to sit down in person with the radiologist at the hospital and review the scan together with him. The cancer center I went to brought this to their tumor board a couple years back and definitively said this isn't a cancer but that of course was before this recent apparent increase in size. I'm hoping it's an overread by the hospital radiologist who was reviewing my CT (I had both a chest CT and a separate cardiac CT). I do appreciate your feedback.
BridgetO Posted February 19, 2021 Posted February 19, 2021 ChiMama, How did they explain the nodule in the non-existant lobe?!
LexieCat Posted February 19, 2021 Posted February 19, 2021 I had a report in the past few months that referenced the (nonexistent) upper left lobe. IIRC, what they were referring to was the upper part of the remaining left lobe (the lower lobe). Pretty sloppy, though, if you ask me.
MBCB Posted February 19, 2021 Author Posted February 19, 2021 So my pulmonologist called and given the increase in size over the past 11 months and despite the previous increases and decreases in the size of the nodule over 2+ years, he wants me to get a PET CT which he already scheduled for next Wednesday and then a needle biopsy. He met with a radiologist and interventional radiologist today. He said even if the PET CT is negative, he wants to get a tissue sample since it could be an infectious or inflammatory process not related to cancer. Trying to look at the positive that at least I will know either way but hard to do. Originally they said a needle biopsy was a challenge given the location but he seemed more confident today that the interventional radiologist could do it. Just thought I'd share the update and thanks again for your support.
LexieCat Posted February 19, 2021 Posted February 19, 2021 Good deal! Hopefully they can get a decent sample with the biopsy. The PET CTs are not foolproof in identifying cancer (and inflammation can also cause uptake), but they provide one more bit of information. Keep us posted. Glad you're able to get your imaging done so soon.
TJM Posted February 20, 2021 Posted February 20, 2021 Good. Hopefully they will do a dotanate scan versus standard PET scan (probably will). Turns out that Neoecrodin tumors are often slow growing so do not light up as much with a standard PET scan using radioactive sugar (essentially). You will know because they wont require you to not eat or drink ANYTHING but water for x amount of hours prior to the scan. If they say no restrictions than most likely a dotanate PT/CT scan. It is more sensitive to slower growing tumors. Damn expensive though. Good luck Peace Tom
ChiMama Posted February 20, 2021 Posted February 20, 2021 4 hours ago, BridgetO said: ChiMama, How did they explain the nodule in the non-existant lobe?! My oncologist called the radiologist directly and apparently it was bruising/blood/shadow/? from the surgery or something. And the lobe they referred to was the upper part of the lower left lobe, the "mass" was in front of it. I also asked my pulmonologist and she said the same thing. I was actually freaked out seeing references to a left upper lobe that shouldn't be there anymore, my mind went wild with conspiracy theories! A subsequent CT done in October at a different facility mentioned the lobectomy and evident scarring. Also, the October CT noted a “Stable 4mm right middle lobe nodule unchanged since 4/26/16” – but there has *never* been a mention of a right middle lobe nodule in any of my scans before that one. Yikes. Perhaps when the radiologist did the comparison they looked and saw it but it was just not put in a report before. There seems to be quite a bit of variation in how they're read and reported.
Judy M2 Posted February 20, 2021 Posted February 20, 2021 ChiMama, I agree. Sometimes my 6mn stable right apical pulmonary nodule is reported on PET/CT scans and sometimes not. I checked and there are 2 different radiologists who read my scans. For example, my scan in October 2020 showed right lung normal but the nodule was reported again this January. Hopefully my oncologist actually looks at the scans and not just the reports.
ChiMama Posted February 20, 2021 Posted February 20, 2021 Judy yes - they always recommend going to the same facility for your scans for "consistency" but it's always a different radiologist and I've found a lot of INconsistency. My pulmonologist looks at the actual scans but I think my oncologist just looks at the reports.
MBCB Posted February 24, 2021 Author Posted February 24, 2021 I had my PET CT today and got my results online. My doctor is away this week so I don't expect to hear from him. Here are the results: CHEST: There is abnormal hypermetabolic activity in the right lung nodule with SUV max measuring 4.4. No additional hypermetabolic lung nodule or mass. No hypermetabolic or suspicious nodes. No significant change in appearance of the nodule when compared to prior CT. However, it has grown over time. Both infectious and neoplastic etiologies are in the differential and CT guided biopsy might be considered for diagnosis. IMPRESSION: 1. HYPERMETABOLIC RIGHT LOWER LOBE NODULE MEASURING 2 CM. RECOMMEND CT-GUIDED BIOPSY TO EXCLUDE MALIGNANT NEOPLASM. 2. NO ADDITIONAL SIGNS OF ABNORMAL HYPERMETABOLIC ACTIVITY TO SUGGEST NEOPLASTIC DISEASE IN THE NECK, CHEST, ABDOMEN OR PELVIS. Any feedback would be appreciated on the SUV max of 4.4 and also if I should get the needle biopsy at the current hospital or the major cancer center in my area. I am hopeful that this is a fungal or infectious process since I had a positive Igg test for aspergillus a couple years back. The SUV rate does concern me but I don't have context and the information online with respect to that measure is somewhat confusing. Thanks again for your support!
LexieCat Posted February 24, 2021 Posted February 24, 2021 Well, as you note, SUV results aren't definitive. Looks to me like you definitely want to get the biopsy, if that's doable. This sounds to me like one of those scans that could go either way--the good news is that it seems likely that even if the nodule is cancerous, there hasn't been any spread. So it might be a simple surgical procedure to remove the affected lobe.
GaryG Posted February 24, 2021 Posted February 24, 2021 If one has to guess, your oncologist might wait till the next scan before arriving to a conclusion. Scans change from one to the other for many reasons. For instance some oncologist are encouraged by growing cancer when the patient is on immunotherapy. Also a growing mass could be due to inflammation. Anyhow, arriving to a conclusion from reading one scan while one is under treatment is not accurate. Your oncologist might compare this scan to previous ones and have a completely different opinion.
MBCB Posted February 25, 2021 Author Posted February 25, 2021 Thanks Gary. The size at 20mm seems to be back where I started in 2018 when it was two adjacent nodules at 14mm x 14mm and 5mm x 10mm. Now it is one at 20mm. It had gone down to 8mm before that. I am just hoping this has been going on from even before September 2018 when it was discovered as an incidental finding and that it is more a chronic issue. To your point it may be different on the next scan and smaller (or bigger). In any case I think it's about time for the needle biopsy at least. If it is infectious or inflammatory and not a cancer, maybe they can figure it out then. Not looking forward to it but I know others have gone through much worse. Thanks again.
Tom Galli Posted February 25, 2021 Posted February 25, 2021 MBCB, Here is some insight into SUV and PET scan results. Stay the course. Tom
MBCB Posted February 26, 2021 Author Posted February 26, 2021 Thanks Tom. Helpful to see your results and the explanations of those results.
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