Anyone Heard of This?/Colon Cancer spreading to esophagus

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jcavanaugh
jcavanaugh Member Posts: 100
edited March 2014 in Colorectal Cancer #1
Brief history - diagnosed 5/02 - recurrences in 4/04, 10/5, and 10/6. Until 10/06, we had always had the option of surgery to remove cancer and then start chemo. Well, since 10/06, we have been on a different ride - chemo first. Pet scan in 05/07 showed multiple mets in liver and some in lungs (only on ct part - did not lite up)/cea was about 95. CEA is a definite marker for my dad - noted by several doctors. CT scan in June showed lung met shrinkage and liver mets slightly increased even though CEA was not 14.8. In October 07, CEA spiked to 132 and went down to 30 in a week (doctor cannot explain this). Now, latest PET scan shows no change (lung mets still do not lite up). Also, the esophagus lite up on this scan. His current CEA is 38. Here is where we are confused. In the past, his colon has lite up more than once and every time a colonoscopy is ordered and it is clean. Also, when he had his last surgery, three spots lite up in his liver. According to the surgeon, only one of them was cancerous. So, PET scans have never been 100% accurate for us. Has anyone else had this happen to them?
The oncologist wants him to have a ct scan done before appointment with specialist at hopkins (give him a better picture about what has happened). He told my mom that he might switch drugs and try radiation. Has anyone else tried radiation? I thought that radiation was only used to shrink tumors prior to surgery not eradicate them. Isn't this correct?

We are going to see a specialist at Hopkins on December 18th. We saw him back in October. He told us that my dad could live for many more years on treatment. He is doing fine. This is not the end of the road. I hope that he was telling us the truth and not what we wanted to hear. I am so frustrated. I just want to walk out of a doctor's office with good news. Is that too much to ask for!! We have not experienced that in over a year. I know that I sound selfish but I am not used to this. Is it possible for my dad to still get to remission? Are there any new drugs out there?

We are scheduled to go on a family vacation to London over the winter break (12/26-1/2). The oncologist says that my dad can go - no problem. He wants him off treatment the week before we go. I am nervous about this. Should he be off of treatment for two weeks? I really hope that the doctor knows what he is doing. We will verify this decision with the specialist. I know that I am going on and on. I am just so frustrated and really wanted to start off the holiday season with some great news. Any thoughts or ideas are appreciated.

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  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #2
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    Hi,
    I am sorry you are experiencing so much frustration. It does sound like a roller coaster ride as they say! Well, I know from my own personal experience that a) any area of inflammation can show up on a PET scan b) sometimes PET scans can provide false negative results...Your Dad's esophagus probably lit up due to inflammation. As for the liver mets, I cannot explain why 3 lit up and two were not cancer. I have a cyst on my liver but I don't know whether it ever lit up on a PET or not. I do know that in my case, only nodules greater than 1cm in size lit up in my lung. When they were smaller they did not light up. That is the reason that a CT is usually ordered first - and then a PET scan is overlayed to see if what shows up on the CT is cancer, or something else.
    As for his CEA, I don't know. I would say it indicates that things are kinda going back and forth, but I don't know why it's fluctuating so wildly. I think sometimes chemo can do that...other things can also affect CEA, like being around a campfire.
    I'm not sure about radiation, but I know they use RFA on lung mets..
    Also, there are other treatments available such as SirSpheres and Gamma Knife.
    I think you ought to go on your trip and try to enjoy yourselves, of course see what the doc at Hopkins says. He did not lie to you about your Dad living a long time. I have a friend who has survived 8 years so far with advanced Stage IV disease. She did not think she would live to see her daughters graduate from high school, etc. She is only 42 years old and is living a very happy life despite all the hardship.
    Best wishes,
    Susan H.

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