Karen_L Posted November 12, 2022 Share Posted November 12, 2022 @walfredo2001 I'm doing well also, thanks Dan. Recent brain MRI showed no changes, new CT scan coming right after Thanksgiving-- the last one showed stable lungs. My scanxiety tends to loom about two weeks before a test and I'm right on schedule. I'll wrestle with it for a few days, then I'm typically OK. (Wrestling usually means that I review treatment options should they find progression, which gives me at least the illusion of control. LOL.) I hope the pattern holds this time around-- there's too much Thanksgiving cooking to be done for me to be distracted by fear. Please report back about Dr. Merry's response. I'm fascinated with the mix of specialists and institutions you've got. Legacy, OHSU, and Providence? I had no idea the Medical Powers That Be allowed that these days. It would be interesting to hear how you pulled that together. Karen Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
JulieS Posted February 2, 2023 Share Posted February 2, 2023 My story sounds very similar to Walfredo2001. I have a large mass blocking my airway. It was found on October 31, 2022. It has collapsed my lung. My PET Scan shows an uptake of 13.7. I have had a bronchoscopy and and an EBUS procedure. Neither one was able to get an accurate biopsy. I was scheduled for the VATS procedure on January 5, but the surgeon canceled it because my CT Scan on January 3 showed that the mass had shrunk an inch without treatment. I'm still not sure what to think. The mass was 4.0 cm x 2.9 cm and is now 3.9 cm x 1.9 cm. I am open to opinions. I have been on a rollercoaster since October 31. Thanks. LouT 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 3, 2023 Share Posted February 3, 2023 Julie, Welcome here. I normally link LUNGevity’s Lung Cancer 101 knowledge base in my responses but am at sea on a cruise ship struggling with a small screen and big thumbs. I wrote a blog on PET scans in my Stay The Course Blog on this Forum. It explains Standard Uptake Values (SUV). Normal cellular uptake ranges from 2.0 to 2.5. Inflamed tissue injury, radiation scar, sutures can show at about 4.0 to 4.5. Anything higher is presumed to be a metastatic cancer response. Your uptake at 13.7 should be concerning. Tumors shrink, sometimes without treatment. Moreover, measurement techniques or CT machine tolerances vary and these can explain differences in reported size. If it were me, I’d press for a biopsy, even if it is performed by surgical means. A 13.7 SUV is too concerning to do nothing. I’d see another thoracic surgeon and get a consultation with a medical oncologist soonest. Stay the course. Tom LouT 1 Quote Link to comment Share on other sites More sharing options...
JulieS Posted February 3, 2023 Share Posted February 3, 2023 Tom, Thanks for the advice! The PET Scan uptake is what concerns me too. I have an appointment with my oncologist on February 14. Thanks again for the advice - it is greatly appreciated it! Enjoy the cruise! Julie LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 5, 2023 Share Posted February 5, 2023 Good on you that you have an appointment with your oncologist. I wonder if they have a different thoracic surgeon they would recommend? Press for a biopsy. I suggest you press for the gold standard, another attempt at a tissue biopsy, and, also, in the interim, a blood biopsy. A 4-ish cm. thing in my lung would still deserve attention, IMO. (!!) LouT 1 Quote Link to comment Share on other sites More sharing options...
JulieS Posted February 5, 2023 Share Posted February 5, 2023 Karen, Thanks for the advice. I greatly appreciate it! I agree that a 4-ish cm thing in my lung deserves attention! I will see if the oncologist can recommend another thoracic surgeon and press for a biopsy! Julie LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
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