Hi! I wanted to get back to you about your inquiry about people's experiences with esophageal cancer.
I was diagnosed in January of 2013 after nine months of misdiagnosis trying to figure out what was causing my swallowing problems. I had about five or six EGD's with biopsies all coming back negative for cancer. The doctors decided I had a rare swallowing disorder and I went in to the hospital to have that fixed laparoscopically in December of 2012. The doctor discovered the tumor when he opened me up. He put in a feeding tube and closed me up. I had already lost over 20 lbs that I did not have to lose as I wasn't overweight to begin with and they were worried about me losing more.
I live in Oregon and felt that the doctors in my area were not experienced enough with my cancer. I was also 39 at the time of my diagnosis with two young boys, so I really wanted the best treatment I could get, so I decided to go to MD Anderson in Houston for my treatments. I had friends in the area as I grew up there, so I had a place to stay. They ran me through a battery of tests, CT, PET, ENdoscopic ultrasound (EUS), as well as cardiac and pulmonary baseline screens. Then I met with my team of doctors, the oncologist, radiologist, and future surgeon to discuss their treatment plan for me.
I was stage III, no metastasis, 1 suspicious lymph node that they were unable to biopsy because of its position.
My treatment was to be six weeks of concurrent chemo and radiation. The radiation being the main treatment, chemo in support of the radiation work. I was approved for IMrT radiation which is a little more targeted than traditional radiation. My doctor felt strongly that it was better for me because I am quite small, and he didn't want to risk damaging my lungs or heart.
I got a power port implanted in my clavicle for chemo. And started my treatments the next week. I went in on a Monday and had an infusion of docetaxel and was hooked up to a five day slow infusion of 5-fu. They gave me a fanny pack that had the pump and my chemo drug. I carried it around with me. Then I was disconnected on Friday and enjoyed two days off before repeating. Monday through Friday I had a ten minute radiation treatment.
It was over all much easier than I had anticipated. My main symptom was fatigue. I had worsening swallowing problems, but I hadn't been able to eat anything solid for about five months before my diagnosis anyway, so the feeding tube was a necessity and a blessing. I became unable to swallow anything at all about the third week of treatment. The radiation caused my esophagus to swell up internally and anything got painfully stuck, so I stopped eating at all. I know water tasted funny to me, but as I never had to/couldn't eat I can't really comment much on that. It was nice though not to have to taste the medicines I took as I could put everything in my tube.
I kept a regular rotation of my anti-nausea meds so was not bothered by nausea. I was told it is easier to keep prevent it than get rid of it once you have it, so I took the medicines round the clock, as the zofran I was prescribed had no side effects. I also had phenergan which made me super sleepy, so I took that at night. I was also on Vicodin (hydrocodone), as I had a lot of radiating back pain from the position of my tumor. My medicines were necessary, but did the trick.
I was super tired by the end of my six weeks of treatment. My symptoms peaked about two weeks after treatments ended and gradually got better. I was actually able to eat solid foods for the first time in six months. I was given about six weeks to recover my strength and try to gain a little weight before surgery. A PET scan showed the chemo/radiation had killed off the tumor and it was shrinking, but surgery was still considered the best thing to do, as EC tends to recur most often in the esophagus.
So in May of last year, I had an Ivor-Lewis esophectomy. I had half my stomach and a third of my esophagus removed and the remaining parts reconnected to make a new "stomaphagus". The surgery was about nine hours. I have an incision from just under my rib cage down to my belly button and one across my right shoulder blade. I woke up with an NG tube for drainage, two chest drains, the incision sites, a catheter, and an epidural pain pump in my spine, as well as IV and heart monitors. They keep you totally doped up that it's all a haze, otherwise I would not have been able to tolerate the NG tube.... That is the one thing I have a lot of trouble with. They get you up and walking within an hour of waking up from surgery and doing breathing exercises to keep fluid from building up in your lungs. One by one tubes are removed as the drainage clears up. Usual hospital stay is 8-10 days... I was cleared to go on day six, but I chose to spend one more night as it was already afternoon. They send you for an X-ray and barium swallow to make sure all is good before you can leave.
Then you are cleared to first have clear liquids, then thicker liquids, gradually increasing texture and variety. You supplement with the feeding tube, which they put in at surgery time if you don't already have one. The goal being to be fully supporting your calorie needs orally by six weeks post surgery. I had my feeding tube taken out on week seven post surgery. I had been eating all my food from week five and a half.
It is a little bit of trial and error what particular foods work best for you. There are some things that you are told to avoid as they bother most people. Sugars are the big no-no as they cause dumping syndrome in most people. Our new systems break them down too fast and it causes diarrhea in most people. I ended up with reactive hypoglycemia instead which is a related problem, but doesn't cause diarrhea. I was very lactose intolerant at first, and now much less so. I still avoid dairy, but eat butter with no problem and can have very little amounts of dairy products with no ill effect. Gas producing foods also don't work for me. I bloat up painfully. But overall I am so happy with being able to eat again I don't mind the restrictions of my diet. I don't suffer from reflux, although I am on nexium which helps prevent that. It took about three-five months to really settle into what works for me and for my stomach to stretch out. I had to eat small amounts frequently, but now I eat three meals a day with an occasional afternoon or evening snack if necessary.
I sleep on a wedge pillow. I bought a nice one on amazon.com with a body pillow as I am a side sleeper and this enables me to sleep on the right angle but on my side comfortably. As I said I have not had any reflux. They gave me a horribly hard wedge pillow in the hospital, which was not an ideal solution for me.
It took awhile to regain my energy. That was the hardest adjustment for me. I have always been very active and getting tired so easily was difficult for me. I am about 85-90% back to normal. I still find myself more tired earlier than I used to, but I can do pretty much anything I want. It's my concerns about my blood sugar that really limit me, but I am finding what works for me with that too, but that was a trial and error thing too. It took me about six months to figure out what was going on and get it confirmed by an endocrinologist. Now I am getting the hang of keeping that in check.
Anyway, May 8th is my one year anniversary of my surgery and I count that as my anniversary of being NED too. I have had check ups every three months to monitor my recovery, including two PET scans, a CT scan, and two EGD's all of which show things to be going great! Now I am on four month check ups alternating PET and CT scans, and only one EGD a year. If all continues to look good, then I think they go to six months for a couple years, then yearly.
Anyway, it goes by quickly.... Your doctors will do everything they can to keep you comfortable. My doctors said cancer is hard enough without dealing with side effects..... They don't want you to be in pain or nauseous and will do whatever necessary to help you be as comfortable as possible. So don't be afraid or embarrassed to tell them any symptoms you are having. They will try new things or give you higher doses of medicines as needed.
How are you doing right now? Have you started treatments yet? What plan do your doctors have for you?
I wish you the best on your recovery! I am happy to answer any specific questions or concerns you have if I can. Treatment for EC has changed a lot in recent years and the surgery has gotten more successful than it was.... Less problems arise now. Make sure you feel really good about your surgeon though, as the surgeon's experience and skill at performing the surgery very strongly correlates to your not having complications or problems afterwards.
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April 2014
Hi! I wanted to get back to you about your inquiry about people's experiences with esophageal cancer.
I wanted to mention the Esophageal Cancer Education Foundation www.fightec.org. We have support groups that meet by conference call on a monthly basis. Patients calling in with quality of life questions and hearing how other patients have handled a specific issue. We also have a 24 hour hotline to help with quality of life questions as well. Check it out.
