Coping

Hey all, We meet with the doctor tomorrow morning to actually get all the results of the pet scan. The surgeon is still confused why my husbands liver didn't show up on the 1st pet scan. He said it had to be there, and our hospital mis-read it. He told us there was nothing else for us to do. We are coping with it as much as expected. My husband wants to live it up and take each day as it might be his last. That scares the heck out of me. I was hoping to get some feelers out on how long he has before I start seeing the signs it's getting worse? I've read different things, some say with treatment 3 to 5 months, others say longer. My husband has decided on NO treatment, any ideas on approimate timelines without treatment? I know NO ONE can give me definite answers, but at this point I'll take whatever advice I recieve.   Take care...and my prayers are with you all! Diana

Hi,

 

I am newly dx and was wondering why your husband has decided upon no treatment?

Chrissy, Australia 

These people confuse me...If it didn't show up on his first PET and you don't have results from new one, then how can he say they misread first. Maybe he's just wrong and whatever is there isn't metabolizing or cancer, if it doesn't show on PET. (Am I crazy-I found out my husbands recent clean PET was someone reading last June's PET instead?)  We have new PET Mon and CT Tues since oncologist doesn't trust any of last results now. He is doing really well, doing tongren conference calls regularly, with the local "guinea pig class" weekly, and I know it sounds insane, but I am still hoping to get a new clean PET this week. The actual read on the last one (3 weeks late), didn't seem to indicate lung nodules which is what we were looking for after post surgical CT showing new nodules, so I'll be interested to see. One of our tongren friends suggested that perhaps the tiny light up in the lymphatic was the cancer cells we had been cleaning out of his lungs, and it actually makes sense since a healthy immune system would function that way, and the lymphatic was in the vicinity of the lungs. We'll see what the tests show, so it's another week of pins and needles! Good luck with the doctors and test results. Will keep you in my prayers. 

My husband was diagnosed EC (T31N), he went thru 2 sessions of chemo and 25 radiation treatments. They were hoping to do the surgery on Feb 22nd.

Feb. 21, we arrived at the Cancer Center of Advanced Medicine for all of his pre-op stuff. They did another ct and PET.

When the doctor met with us that afternoon, he walked in shaking his head. He said the surgery is OFF!  He said the PET scan was not good. His liver lit up like a christmas tree. My mouth dropped, I could see the disappointment in my husband's eyes.

The surgeon was confused. He stated that my husband had to have had the cancer in his liver on the first PET, but was mis-read. He wished he would have done the 1st one. He told us that there is nothing more for him to do. He said we would have to meet with our onc.

We met with our family doctor this morning to find out what went wrong. He said to us that by the size of the tumor in the EC. he would have assumed it had spread. He is puzzled as well. He is gathering all reports and is going to have them read again. He then advised us of what symtoms to look for in the days ahead.

One was blood clots. Has anyone else had trouble with clots?

Has anyone been told they have EC with mets to liver and survived? My husband was very sick through his chemo and radiation, and he said that if the treatments were only going to slow down the process, and not cure him of this beast, then he would much rather decline treatment and enjoy what days he has left.

I just wish I knew how long he actually has? How long before he starts swelling and turning yellow, or a blood clot appear?

praying extra hard for each and everyone of you!!

Diana

 

Diana-So sorry you and your husband found he was unable to do surgery. I hate to keep pushing the tongren thing, but we've used it alongside treatment, and if my huband chose not to do treatment (I wouldn't blame anyone for choosing quality over time after seeing what hell treatments were), he would still do tongren. I know people who have foregone any treatment and only used the acupuncture doll and gone into total remission, although I don't know anyone with esophageal in particular (we're hoping). A friend told me about his daughter who had a tumor on her thyroid that went from 3-10cm in a few months at the age of 24. She refused chemo and after 3 1/2 months of only using the doll and a weekly acupuncture visit it was gone and she was in remission. They wanted to do radiation in spite of it being gone, but she refused. She is currently 27 with no recurrence and very healthy. Pat does the cancer specific calls and we do a weekly multi purpose class. I suspect if we went to the cancer specific class that meets weekly we would have many stories to share. One person in our weekly class has come a few months now with Non-Hodgkins. He wears his blood oxygen monitor and it always goes up in class, and he said it stays elevated 3-4 days after class. His doctors can't believe his progress from golfball size growth down to remission, and are seeing tissue restored in ways they can't figure out. I know it's crazy, but something is clearly going on.