Hey Brian! So sorry you are having to go through this! I had a stage III adenocarcinoma esophageal cancer. They have no idea what caused mine as I am a complete anomaly with no risk factors. I was 39 when I was diagnosed. I had been having random swallowing problems and they ended up thinking I had a rare swallowing disorder as my five EGD biopsies all came back negative for cancer. Anyway.... I went in for a surgical procedure to fix that and it was discovered I had an 8cm tumor at my GI junction that was doing a convincing job of mimicking the swallowing disorder. They put in a feeding tube and closed me back up.
I live in Oregon and decided to pursue treatment at MD Anderson in Houston. I highly recommend being treated in a major cancer center if you can. I have been told that the outcome of the surgery is very directly related to the surgeon's skill at performing the procedure.
When I arrived in Houston I had a couple weeks of them re-running all the CT and PET and EGD procedures again on their equipment to really type and stage the cancer. I had a port put in for chemo.
For anything later than stage I cancer, MD Anderson at least prefers to do six weeks of concurrent chemo and radiation. I received a once a week infusion of docetaxel and was given a slow drip infusion of 5-fu in a little fanny pack to carry around with me all week. That was fine except I couldn't shower if the port was accessed. The doctors will give you all sorts of medicines to cover any side-effects you may encounter. I took the anti-nausea medicines around the clock and had no problems with drug related nausea. The chemo dose they gave me was relatively low dose. They said it was in support of the radiation which was expected to do the brunt of the work.
I had Monday through Friday radiation treatments. They took only about ten to fifteen minutes and were quite peaceful actually.
I noticed no side effects until the end of the third week. My already difficult time of swallowing became gradually worse and worse as my esophagus became irritated due to the radiation. I had the feeding tube though which took the pressure off of having to eat orally, so I was able to not stress out about it. I also became increasingly more tired.
I didn't lose my hair, but it did thin some. My skin became very dry, but I didn't have any blistering. I had the IMRT radiation treatments which are more targeted than the regular radiation. They were concerned about accidentally damaging any other organs as I am tiny. If you have the option and your insurance covers it, opt for the IMRT.
My side effects peaked two weeks after treatments ended and then I started to be able to eat soft foods again. The chemo/radiation had killed off my tumor and only dead tumor tissue was left and shrinking when they did scans four weeks later. They restaged my cancer with CT and PET scans and then the surgeon scheduled my for surgery.
I had an Ivor-Lewis esophagectomy and resection done last May. The surgery is lengthy and quite involved. I think it was nine hours. I have two incisions. One from just below my rib cage to an inch about my belly button and one across my right shoulder blade. I lost half my stomach and a third of my esophagus. They rejoined the pieces to make me a "stomaphagus".
I woke up with an NG tube, two chest drains, an epidural pain pump and all sorts of monitors attached to me. They make you get up and walk the ward several times a day from as soon as they can get you up after the surgery. A breathing specialist comes and makes you do breathing exercises three times a day as well. I was in the hospital for six days. Usual time is eight to ten days til discharge.
I stayed in Houston for two more weeks before I felt like I was strong enough to come home.
Back home, I was patient in eating again. I followed the nutritionist's advice on what sorts of things to eat and at what rate to add things to my diet. I had some problems with bloating but they resolved in about two-three months. My stomach also gradually stretched. I had to eat a lot of small meals at first. Now I eat three meals. My dinner is a smaller lighter meal. Sometimes I have a snack in the evening, but not always. I have reactive hypoglycemia post surgery. I never had blood sugar problems before. That is not common though. People usually have dumping syndrome, but I get hypoglycemia instead. I eat very minimal sugar. None intentionally, but I don't avoid it entirely. I don't eat desserts/sweets. Unfortunately I can't eat fruit either. It doesn't agree with me post surgery. I was lactose intolerant.... Still am for the most part, but I can eat butter with no problem. I avoid gas causing foods like beans and cruciferous vegetables due to my previous bloating problems. Now that I have found what works for me I have no problems unless I deviate. I was told it is trial or error to find what works and what doesn't. There are no hard and fast rules except the sugar thing is a pretty common thing for everyone after GI surgery. I don't eat any meat other than seafood, so I can't say how that goes.
The feeding tube came out at six weeks post surgery. I was fully eating orally by five weeks. I gained all my weight back to normal by six months post surgery. The feeding tube had allowed me to maintain my low weight through treatments. I had lost about 20 lbs over the nine months it took them to diagnose me. I gained back 15 and have been steady at that weight since November.
Energy wise, I feel 85-90% of my old self. I get tired more easily. I am also very careful of my blood sugar which makes me not want to push my body too hard physically for fear of a blood sugar collapse. I feel good though over all! I am so happy to be feeling well! I made sure to take sort walks several times a day from the beginning. I also went to a physical therapist to help regain my stamina and strength. That helped a lot!
I sleep on a wedge pillow. I bought a nice one on amazon.com with a body pillow, so I can sleep on my side. I sleep quite well on it. I take nexium which works well for me. I have had no reflux.
I did have some nerve pain and numbness from the surgery. I still take a medicine for that. The pain has completely gone away, but I get tingling feelings if I try to stop taking the medicine entirely. Maybe eventually I can get off it.
It's all manageable. Everything was better than I had braced myself for it to be.
Your first step is a variety of tests so they can see just what they are working with stage wise and where exactly it is. The CT and PET are painless and more boring than anything else. They may do an EUS which is an EGD with ultrasound. They'll put you under for it like a regular EGD. They took a lot of biopsies and it bothered my esophagus. They will also probably give you a port. A quick procedure they will also put you under for. They did chest x rays and had me do cardiac and pulmonary tests to assess my baseline rates. Quick and easy. Two weeks later I was starting treatments.
I wish you the best of luck! Please feel free to ask me any questions you have. I am happy to help in anyway I can! Hopefully yours has been caught early!
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April 2014
Hi Brian, I'm sorry I haven't stayed in touch. I see it's been 9 months since you were on here. I hope you're doing ok or a family can let me know.0February 2015
Hey Brian! So sorry you are having to go through this! I had a stage III adenocarcinoma esophageal cancer. They have no idea what caused mine as I am a complete anomaly with no risk factors. I was 39 when I was diagnosed. I had been having random swallowing problems and they ended up thinking I had a rare swallowing disorder as my five EGD biopsies all came back negative for cancer. Anyway.... I went in for a surgical procedure to fix that and it was discovered I had an 8cm tumor at my GI junction that was doing a convincing job of mimicking the swallowing disorder. They put in a feeding tube and closed me back up.
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.
