Christine79 Posted October 19, 2018 Posted October 19, 2018 Hello, I did an introduction yesterday but I haven’t seen anything on it so I am not sure i did it right. I was wandering if anyone ever heard of cancer cells spreading to the mediastinum (center of the chest) already with a small nodule? Mine is 8x11 or 8x8mm; depending on which doctor I talk too. It had an suv of 3.6 and there were two areas in the mediastinum that showed uptake. It says no noticeable enlarged lymph nodes but to follow up. Everything I have read says the nodule can be tiny but if the cancer cells have spread already to the mediastinum then it is automatically stage 3. They cannot biopsy it because it is too small for where it is located. Close to my heart and deep in the lung. Mine is not spiculated either. I have a fourth catscan (this time with contrast) scheduled on Nov 1st. Which will be 18 weeks since this thing was incidentally found. Based on whatever they see on it I will be referred to a surgeon. So I just wander if anyone has heard of this situation and knows if it can already be spreading being so small?! Thank you, Christine
Tom Galli Posted October 19, 2018 Posted October 19, 2018 Christine, You introduced.yourself correctly. You posed a difficult question. Can a small nodule metastasize or throw off cancer cells? Yes. I believe recalling you reported a PET uptake of 3.5 in mediastinum tissue. True, PET SUV more than 2 can indicate metastatic cancer. It can also be an inflammatory response. Small nodules are tricky. Google Cleveland Clinic Pulmonary Nodules and read the paper. There are many reasons nodules form and most are not cancer. Generally, nodules grow larger and the border becomes irregular (speculated) and that may be an indication of cancer. Unfortunately, because your nodule is so small and in a tricky location, biopsy becomes difficult. And again unfortunately, a biopsy is the only way to diagnose lung cancer. I completely understand how this nodule that defies explanation can unsettle you. I’ve had many nodules appear then disappear in consecutive scans. It is maddening dealing with the uncertainty. I wish I had a solution. Perhaps your difficult question was the reason our response was delayed. Answering nodule questions is one of the most difficult things to do. Stay the course. Tom
Christine79 Posted October 20, 2018 Author Posted October 20, 2018 Hi Tom, Thank you for writing me back!! Here is what the pet says: #1: said that the original 8x8 nodule in my lower left lung showed 3.6 which “raises concern for underlying neoplasm-close interval followup recommended if tissue diagnoses is not obtained at this time” But #2: says “small amount of activity in the subcarinal region of the mediastinum without definite enlarged lymph node near this location. Activity is non specific and could represent underlying lymph node activity but could also simply be related to vascular activity or activity in the adjacent esophagus. Follow up is recommended” Then #3 it said there was a “subtle nodule adjacent to the left side of the aorta with FDG activity of 3.1 which could represent additional small lymph node or additional vascular activity. Follow up recommended.” i had to look all that up because I had nobody for two weeks to explain it to me. The biopsy doct briefly reviewed it and said he doesn’t suspect lymph node but isn’t sure what it is. Then two weeks later the pulmonologist called me and said he suspects it is lymph node activity. I am so lost and scared and don’t understand how screening programs can do “watch and wait” if these things can have cells breaking off and spreading before they are even a cm big. So I was hoping somebody knows this is not a common thing 🤞🏻 I want to believe it is just cardiovascular in those other two areas and not that it has spread already, at less then a cm, when it is supposed to be the “lucky” time for people to have them found.
LexieCat Posted October 20, 2018 Posted October 20, 2018 I sympathize with your situation, but honestly, nobody here is going to have a better guess than your doctors. If they can't tell you for sure, neither can we. Bottom line is, it might be this or might be that. I know the uncertainty sucks, but that's the way these things work. You don't know until you know. And even after surgery or other treatment, lung cancer is very unpredictable. I HOPE surgery "cured" my cancer, but there's no way to know for sure--which is why I will be going for twice-a-year scans for the foreseeable future. For right now you are doing all you can. Getting yourself worked up into a state is not going to help you any. I get it, I really do. It's scary stuff. But dealing with lung cancer tends to be more of a marathon than a sprint, and you'd do well to conserve your energy. Remember, just knowing that it's there puts you way ahead of the game.
Christine79 Posted October 20, 2018 Author Posted October 20, 2018 Lexie Cat, Well I will be adding you to my prayer list and pray urs doesn’t return! 😊 I am just happy I stumbled across this page. I still don’t know how I finally got it to work but being able to read other people’s stories and comments helps me to see I am not alone in all of this. It is very surreal and I just feel so scared since it lite up. Like that killed my glimmer of hope. I realize all the stuff I read isn’t too accurate given mine doesn’t meet the “traditional” malignant nodule. Mine is not in a upper lobe, doesn’t have spiculation, it is solid (not round or sub), I am way under 55, etc. Realizing googling everything didn’t exactly match up with that aspect, has made me wander what’s real and not real in what I read So having real humans now to talk to is more helpful then not. Even if nobody on here knows if it’s a norm for them to have cells break off being so small. At least I have somebody responding versus the 15 weeks on being alone thus far. So thank you!!❤️
Tom Galli Posted October 20, 2018 Posted October 20, 2018 Christine, You are not alone now. Most of us have been where you are now. Open up member profiles and read about our pre-diagnostic journey. It is rarely smooth. Some of us have had surgery without a diagnosis. But, bear in mind we are not doctors. You are young and your PET scan SUV is above 2. I’ve had many PET scans in the 3 to 3.8 range that turned out to be false positives. This was likely your first PET scan and your overall metabolic rate may be higher than normal. That coupled with inflammation might explain your elevated SUV. Unfortunately lung cancer diagnosis is not an exact science. I am somewhat hampered because I’m answering you on a cell phone. On the main page of our forum, you will see the word Blog. Click on it and select Stay The Course. Read the blogs “Comprehending The PET” and “Free and Invaluable”. The former provides information about the PET scan and SUV ranges. The latter gives very important information about free lung cancer treatment available from the National Cancer Institute for American Citizens. You might want to email the contact in the blog to see if your nodule is far enough along to treat. When I say free, I include travel and lodging cost at the NCI hospital while having tests or treatment. I wish I could assure you that your small nodule does not release cancer cells. I can’t. I can’t even tell you if your small nodule is cancer. Stay the course. Tom
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