Cancer Survivors Network

My husband was diagnosed in September 2010 - T3N1M0. He had chemo/radiation followed by THE surgery in December followed by more chemo. He recovered quickly from the surgery and treatments. Life was returning to a near-normal status and after 2 clean scans we were hoping for the best. I had not yet found this site, so we were unaware of just how brutal this cancer is. Paul was extremely healthy and fit. He never had any stomach issues or any other health problems. Our oncologist told us this cancer usually strikes older, overweight, smokers and drinkers. He said the poor statistics are based on them being the majority. I think the oncologists and surgeons should visit this site! We were cautiously optimistic. At the end of August 2011, his PET scan showed one spot of concern. After a biopsy it was determined this was a localized recurrence. Because the spot was so small and seemed isolated, the first treatment suggestion was cyber knife. Unfortunately cyber knife was not a safe option for my husband. The location of the cancer was too close to the windpipe and too hard to safely treat with the cyberknife. The surgeon who performed the THE in December 2010 said there was nothing he could do surgically. We contacted Dr. Luke tich, who is talked about extensively on this site. He felt he could surgically remove the spot and "re-do" the surgery. He wanted to remove more of the stomach and more lymph nodes. My husband had the surgery in October. After 9 hours of surgery the Dr. said he was unable to remove the cancer because it would have required the wind pipe to be resected. Apparently you cannot have 2 anastomosis at the same time, so he would have to leave the esophagus disconnected with a drain, and a second surgery would be required to re-connect that. He didn't want to proceed due to the amount of time the surgery had already taken. They felt they would operate again in a few days. When the lab reports came back, it showed traces of cancer in 2 lymph nodes. The doctor recommended chemo and radiation to try to shrink the cancer to hopefully make it surgically removable without having the remove part of the wind pipe and to address any "stray" cells. The fear was if anything changed, they would disconnect in the first surgery and maybe never re-connect if his condition changed. The surgeon told us all of the cancer in his body would fit on a teaspoon and he felt because Paul was only 54 and otherwise extremely healthy we should be optimistic. We opted for the chemo/radiation. He had 5 chemo treatments and 24 radiation. He tolerated the treatments pretty well. He was scheduled to have a PET scan at the end of January. He went back to work Jan 3rd. He started to have back pain. At first we thought it was because he went back to work and was on his feet and more active than he had been. The pain got a lot worse, so they moved the Pet scan up. The pet showed the spot that was treated was completely gone, but there was a mass in the pelvic area. He had an ultrasound and biopsy. It was determined he had a "drop metastasis" in the pelvis between the prostate and rectum. Because of its location, surgery would be very difficult and involved (again!). They suggested more radiation to shrink the tumor to make the surgery easier, so he had 20 more radiation treatments. The radiation quickly relieved the pain and we hoped for the best. Unfortunately, the PET scan at the end of March to determine if we could proceed with surgery showed the cancer had spread rapidly and to multiple areas. The prognosis is heartbreaking ~ only a couple months.
I found this site in September and I have learned a lot from so many. After a couple posts, I was more comfortable just reading. I know I was afraid to hear that once it comes back, it's not curable. We had one of the top surgeons in the field telling us it could be done. I had to believe that. It seems they are trying to do more for a second attack against this horrific cancer. Hopefully they will be able to figure out what works and what doesn't. We are now working with a pain management doctor. I took the list of medicines recommended on this site to an appointment. She tried to hide her "eye roll" when I told her I brought information from a discussion board specific to EC. When we reviewed the list, she was really surprised that all of the suggestions were so accurate. She said she was very impressed because that is not ususally the case. - Thank you to all who contributed to Sherry's list. Unfortunately, so many of you are aware of what we are facing because you have experienced it. We have 3 children. They are 16, 21 and 23. We are trying to make all of the right decisions. We are making the most of each day and taking several trips. My family copes better when we are away and just concentrating on each other without the demands of jobs, school, house, etc. getting in the way. I was wondering if anyone has any advice on how to prepare for this.

Lynn