My Husband's Experience With Esophageal Cancer and Esophagectomy
In September 2018, my husband, Ian, was diagnosed with esophageal cancer. I would like to share with you some of the things he went through with an aim at helping you understand what you or a loved one might expect if this happens in your family.
This article in no way should be considered medical advice, and I encourage you to go to the doctor straight away if you are at all concerned about the possibility that you may have this.
Symptoms of Esophageal Cancer
The initial symptom my husband had was difficulty swallowing. He felt as though there was something possibly stuck in his throat.
At first, he didn't experience this all the time. He thought it might just be allergies, a sore throat, build-up of phlegm, or something that just hadn't gone down completely. He would eat, but not all the food would pass into the stomach. Most of it would be brought up again.
It wasn't only the swallowing. There was a lot of spitting of clear but very thick phlegm and mucus. Again, this didn't happen all the time, and some days were better than others, although this progressively became worse.
In addition, because of growing pain in his back, he had problems sitting for long periods of time.
These symptoms persisted for about four months, slowly worsening. My husband only decided to seek treatment when, one day, he found that he could no longer swallow water. He also realized he had lost a good amount of weight due to the problems with swallowing.
Possible Causes of Esophageal Cancer
Although the causes vary slightly between medical sites, according to the NHS, these are the most common:
- Persistent gastroesophageal reflux disease (GERD in the US, or GORD in the UK)
Drinking too much alcohol over a long period of time
- Being overweight or obese
- Having an unhealthy diet that's low in fruit and vegetables.
Preliminary Tests and Worsening Symptoms
We went to our local 24-hour hospital, and the doctor told us Ian would need an endoscopy as a matter of urgency. Where we live in Brazil, this procedure isn't offered locally, so we had to take a taxi to the state's capital (about 50 miles away), where he was able to get an endoscopy as well as a biopsy.
With the images from the endoscopy, we returned to the walk-in clinic. The doctor told him she was very concerned and instructed him to go home, pack a bag with personal hygiene products, and return in the afternoon. Her plan was to admit him into the hospital ASAP, but that wasn't to be. He arrived home in a taxi the following day. The doctor had arranged an appointment with a digestive surgeon.
At home, Ian was able to eat some food and drink some liquids, but the doctor had said to avoid products that would cause him to produce more phlegm.
Often, when he brought food up, it would be encased in a thick wad of mucus. It was as though a large lump of mucus was sitting in the esophagus, not letting anything pass. Once the majority of that was cleared, he could get some food in.
The lack of food and growing cancer caused him to have an awful taste in his mouth. It smelled foul and made anything he tried to eat taste bad. When it wasn't a thick phlegm, it was nasty tasting froth and foam. Wherever he sat, he needed a bucket to spit in. This, too, began to stink, so we found that filling it partly with water helped. I tried putting a little soap powder or bleach in it, but he found the smell made him nauseous.
Diagnosis and Treatment Options
Before he saw the surgeon, Ian had to have a CT scan, another endoscopy, and some blood tests. Based on the results form these tests, the consultant surgeon told Ian he had esophageal cancer and said that treatment would have to start very soon. Although the doctor told him he was otherwise in good health for his age—he was 67 at the time—without the surgery, Ian would have about six months to live.
Radiation Therapy, Chemotherapy, and Esophagectomy
My husband's plan of treatment for esophageal cancer began with radiation therapy and chemotherapy to shrink the tumor followed by surgery.
If you don't think your life can be put on hold, it can. Everything began revolving around those appointments.
Radiation Therapy and the Toll It Takes
In the second week of October, we had an appointment with the radiation consultant. Looking at the latest endoscopy results, he noted that the cancer appeared not to have spread. He said there was an 80% success rate with radiation therapy. Our hopes were immediately lifted because we had read on the British National Health Service website that the odds were closer to a 12% survival rate after five years. The survival rate depends on the age and general health of the patient. Ian, although 67, had been physically active all his life.
This clinic was also far from where we lived, so we had to take a taxi an hour each way, every day for the five weeks of radiation therapy. All this traveling tired Ian out. The actual therapy session is very short—only about 10 minutes—but the waiting time can get pretty long, depending on what time you arrive at the clinic and how far you are down the waiting list.
Difficulty Eating and Malnutrition
The chemotherapy didn't start the same week, and Ian was getting weaker and weaker. At the clinic we saw emaciated people with nasogastric feeding tubes, Ian was adamant about not wanting this. In the end, he had to have a feeding tube inserted because the cancerous growth and the mucus build-up it caused, were preventing him from eating enough. To be clear, he had to be robust enough to survive not only the chemotherapy, but the surgery after it.
Inserting a Nasogastric Tube
The feeding tube insertion wasn't straightforward because of how narrow the opening had become. The first attempt wasn't successful, so the procedure had to be done with the help of an X-ray. For this, Ian was put to sleep. They had to use a size 3 tube—the size normally used for toddlers. This was the longest and most traumatic day we had. We left our house early in the morning, when it was still dark, and returned home at about 8 pm.
I had never seen anyone malnourished before—his weight had fallen to 58kg (128lbs). The doctor explained that the listlessness and constant fatigue was more a result of the lack of food than the effects of cancer. The doctor sent us home with two bottles of liquid food to be used with the nasal feeding tube, instructing us to only use what was on his prescription. Within three days, Ian's health improved. He went from being a zombie back to his old self.
How to Use a Nasogastric Tube
A blockage in the tube would cause a big problem, so everything needed to be kept hygienic. I had to clean the syringes used to administer the liquid food with filtered, boiled water with a small amount of bleach. For the tube itself, I had to flush it with 20 ml of bottled water before and after administering the liquid food.
Our Liquid Food of Choice
After the doctor's prescription ran out, our nutritionist told us to get Iso Source by Nestle (below). This was the only nourishment Ian had for nearly three months. He was suppose to take 300 ml of Iso Source, six times a day. This meant feeding every three hours. The liquid had to be taken out of the refrigerator 30 minutes before feeding to warm up slightly. This was injected slowly into the nasal feeding tube.
Nestle Iso Source Liquid Food
Ian's chemotherapy began in his third week of radiation therapy. Every Monday, he had chemotherapy in the morning and radiation therapy in the afternoon. The first session of chemotherapy didn't hit him until two days later, when he became very nauseous and stayed in bed. The doctor prescribed medications to help with the nausea, vomiting, constipation and/or diarrhea. Ian refused the nausea medication, but a couple of days later, he ended up needing it. However, he said it gave him diarrhea.
When the second chemotherapy and radiation session came around, Ian didn't want to go but had to, in the end. During every taxi ride, Ian tried to sleep. He had a small pillow behind his head, a washcloth, and a bag for the spitting up mucus. After returning home, he said he wouldn't be going back for any more treatments. He felt so ill from them.
Preparing for the Esophagectomy
Around the middle of November, I informed the doctors of Ian's decision to go ahead with the surgery. For the next month, he barely left the bedroom, urinating in a bucket at his bedside. He only sat up when it was time to have his liquid food injected into the feeding tube.
We had an appointment with the consultant surgeon in the middle of December. The surgeon told Ian he could try eating again but that the feeding tube should stay in until after the surgery. The radiation therapy and chemotherapy had reduced the size of the tumor enough to allow some food to pass—even with the tube in place.
He also said it was important that the surgery be completed within two months after the end of the chemotherapy and radiation. The clock was ticking as already a month had passed, and we were coming into the holiday season.
To prep for the surgery, the doctor told us to get a pre- and post-operative drink called Impact by Nestle (below) to to strengthen the immune system aid with recovery. He suggested drinking three cartons a day for the two weeks before and the two weeks after surgery. This was not within our budget, but we bought 52 cartons, which would equate to two cartons per day pre- and post-surgery.
When we left the office, Ian felt positive. He was given the okay to eat and had a tentative date in January for the operation. Our first stop was a gas station, where he bought a Snickers bar and potato chips.
Nestle Impact Recovery
Our next appointment was in the middle of January to confirm the surgery and speak to one of the surgeons. There were three surgeons who would be operating. Ian's surgery was scheduled for the 21st of January. He was admitted the day before, when I was told he would need a companion. In Brazil, if a patient is older than 60, they need a companion with them around the clock. After he came out of the ICU, I then stayed.
The esophagus was removed and the stomach stretched up and stitched near the base of the neck, where there is now a 4-inch scar. He also had a row of incisions in the abdomen—one at the base of the sternum and some on his back. In total, there were 12 incisions. Two of those were for the drains that were on the sides of his back. There was a lot of fluid that needed to be expelled to reduce the chance of pneumonia. These drains caused him a lot of pain. The pain was keeping him from sleeping, which, in turn, slowed the healing.
The physical therapist came twice a day to try and get him to walk up the corridor and do breathing exercises. The lack of sleep and the pain made exercising very difficult. It was a catch 22—he would heal faster if he got up and moved around, but doing so created more pain.
When the first drain came out, it greatly reduced the pain he was having and allowed him some comfort for resting. The final drain came out the day we left the hospital.
In total, Ian was in the hospital for 12 days.
The Importance of a Good Support System
Although the doctors and nurses treat the patient, it's left to the caregiver to do the rest. If this is something you are planning on shouldering on your own, I would strongly suggest you have a support system. Although I had no one here, I was able to speak to my sisters and cousin. The patient will experience mood swings during this time, and the burden of responsibility for virtually everything will shift to you the caregiver.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2019 Mary Wickison