Postby CLD » Mon Jul 09, 2018 8:34 am
I had the weekend to digest my DH PET scan results, now I have more questions than answers. His Dr is on vacation until July 19, so I would love anyone to weigh in with their thoughts, or suggestions. First, a brief background. In Feb, DH started noticing some shortness of breath upon exertion. Because his brother died from lung cancer and due to his own history, his Dr scanned him right away. Normal scan, so he was sent to pulmonologist who could find nothing and suggested a 3 month rescan. This was done in conjunction with his 6 month pelvic scan. DH got a call the day after the scan that they were going to start him on an antibiotic because his chest CT was suggestive of an infection. At his oncology appointment after the scan, the dr reported that there were *tiny micrinodular densities* in the lung which the radiologist suggested was an infection but of course, due to history, could not rule out metastatic disease. I asked the oncologist if she was *freaking out* and she said *no, not at all. The radiologists have to cover their buts too.* in fact, she was so sure it wasn't cancer, she didn't schedule a followup to discuss The PET results. The next day, DH had a followup with pulmonologist who reiterated oncologists opinion, and said in no way did this look like metastatic spread to the lungs or a new lung cancer, but that he couldnt find a cause for his shortness of breath or cough. He rescheduled 2 month follow up. DH had PET scan that Friday. After a week of waiting for the results, a nurse called Friday at 430 and told me (paraphrasing) *The PET showed SUV uptake of 5.4 in a para aortic lymph node by the right kidney, and T11(spine) and his femur showed an uptake of 2.3. There was no activity in his lungs. We will try to biopsy lymph nodes, but if we can't get them, we will try to biopsy the bone. If not, the dr may just want to start him on Irinitecan. This is a very bizarre pattern of spread for colon cancer. This is inoperable and terminal.* I spent some time reading about PET scans this weekend. Apparently false positives can happen with infection, antibiotic use, and inflammation. He was being treated for a suspected infection with a strong antibiotic which he finished the day before his scan. He also had an accident years ago where he broke his back and many other bones, which could be why the bones are lighting up. Anyhow, it appears to me that there is enough evidence that this is possibly a false positive (Did I mention his CEA is 1...yes, one) or not colon cancer, perhaps a different cancer. I read that the median CEA with confirmed bone spread is 147.5. We keep hearing *this isn't acting like colon cancer*. So are they trying to put a square peg in a round hole? Also, say it is cancer in the nodes, he wants pathological confirmation of bone spread, because that spread would be treatment limiting. There is no way he will begin chemo again without pathological confirmation of cancer, or if they can't biopsy, he'd rather rescan and see if there is an increase in node size, than consider chemo. The biopsy should be scheduled this week after review by an interventional radiologist. Again, if anyone can share any thoughts, suggestions, or questions for Dr, I would appreciate it.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently