redcct's Journey with Esophagus (Esophageal) Cancer

Had reflux & heartburn since his teens, no one ever suggested endoscopy until he started having trouble with his voice & swallowing following surgery for a hernia in August 2010. The endoscopy revealed cancer at the lower end of his esophagus.

Initial treatment was a distance from home, at University of Michigan. radiation Monday thru Friday, & chemo once a week. Side effects were less than we expected, but still not fun. Vomiting: only 1 or 2 times thru the 6 weeks of therapy. Diarrhea: almost daily had severe diarrhea, everyplace we went we took a change of clothes with us. Nausea intermittently. Exhaustion: slept 15-16 hours a day.

Again, it could have been worse. Had bad burns on his back the last couple weeks, couldn't turn over in bed, if he was sitting down he couldn't lean against the back of the chair or sofa. Burns healed in about 3 weeks without further problem.

Had a THE, a particular method of esophagectomy which required 2 much smaller incisions & does not require opening the chest or going through the rib cage. Usually 5-7 days in hospital, my husband Randy was in 2 weeks. Had multiple complications. Esophagectomy definitely affects your life. He no longer has a stomach since they used the stomach to create a new esophagus. Food goes directly to the intestines (which are meant to recieve partially digested food from the stomach) which can result in cramping and diarrhea. Randy has to eat very small amounts at a time, about 1 cup. He has had frequent problems with cramping pain and dumping syndrome (severe sudden diarrhea ~ 15-20 minutes after eating). The surgeon also had to train me to do esophageal dilations at home when he starts having trouble swallowing....usually every 2 weeks or so.

Although the original cancer was removed with the esophagus, June27th, 2011 he had chest pain ending up in the hospital for 5 days. Wasn't a heart attack, but fluid around the heart (pericardial effusion) which worsened to cardiac tamponade requiring a procedure to let the fluid drain from the pericardial sac (pericardial window). During that hospitalization they also discovered the cancer had metastasized to the liver. He was told it was terminal.

The oncologist feels that the best path now would be to have radio-embolization to the liver. This used microscopic glass spheres with chemo or radiation that are injected into the blood vessels that are supplying blood to the tumors in the liver. They block the blood flow to the tumors, which then cannot grow. Meanwhile the chemo/radiation is delivered directly to the tumors. Not a cure, but the closest thing to it that we can hope for. Primary insurance is Medicare, secondary is thru his GM retirement & UAW. Neither will give a pre-auth for the procedure, which is very expensive. So....decision time. The local hospital won't do the procedure unless we pay up front, in case insurance denies payment afterwards. We would possible lose our house. I'm trying to find clinical trials that Randy would possible qualify for , hoping htat it would be a cheaper route. Wish us luck!

After discharge from the hospital, was having so much pain that I called Hospice. They quickly got his pain under control. A week later we started seeing a local oncologist after Randy decided he didn't want to deal with the long trips back & forth to U of M again. The oncologist told us that the liver biopsy showed it was HER2 expressor, so he suggested treatment with chemo and Herceptin. He did stress that the cancer was now terminal, but he felt the chemo/Herceptin treatments would give him at least several more months of fiarly good quality life. We signed off of hospice & started on the treatments. Randy is responding very well; his CEA markers have gond from nearly 1000 in July 2010 to 67 in December 2010. He has lost more weight, does tire more easily than pre-cancer, has miserable days now & then, has "down" days with depression; but we had a great Thanksgiving, he's seen a new baby born into the family, alot of good times with family and friends that he would never have had if he hadn't decided to try the treatments. Oncologist is amazed at his response & feels that the addition of Herceptin has made all the difference.

Ever since liver mets was diagnosed in June 2011, doctors have talked aobut eventually doing radio-embolization of liver tumors. In Deember they said the3 time was right. Spent the next 6 weeks on hold, waiting for the OK from Medicare and secondary insurance. It never came. Someone from Interventional Radiology was running all the insuranc stuff, she finally called & said insurance wouldn't commit to covering it, the hospital refused to do the procedure without a hefty up-front out-of-pocket payment. no way could we afford $25,000 in one lump! Up to me to find a way to get it done!

One of our daughters-in-law started on-line donation site for us. Just out of the blue! How wonderful of her! It's not a huge amount of $, but it will definitely help.....& is sooooo appreciated!

After spending hours & hours over the holidays researching and calling other hospitals & cancer programs, suddenly Beaumont Hospital, only 1 1/2 away, pops up in my Google search. They've done over 500 liver embolizations, & have never had a problem with Medicare! Made appt for consultation on 1/7/12. By the time we left Beaumont, had date of 2/2/12 for radio-ablation instead of the embolization. Dr up there feels it is much more effective, actually heats & kills the tumor. Plans to treat 4 out of the 5 tumors. 5th tumor tentatively planning to embolize a week or 2 after the ablations....it's too close to blood vessels to ablate. Sounds very hopeful; again, not a cure, but they think it can buy maybe even a couple years. And if more tumors appear, they can go back & ablate them also. Hurrah! finally some good news!