Cancer of the Esophagus
Esophagus Cancer Symptoms and Treatments
In September 2018 my husband was diagnosed with cancer of the esophagus. 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 would encourage you, if you are at all concerned about the possibility that you may have this, go to the doctor straight away.
The initial symptom that my husband had was difficulty in swallowing. He felt as though there was something possibly stuck in his throat. In the beginning, it wasn't all the time. He thought it might be allergies, a sore throat causing phlegm or something that just hadn't gone down completely. He would eat, and food wouldn't pass into the stomach and it was brought back up. It wasn't only the swallowing, there was a lot of spitting of phlegm and mucus. This was clear but very thick. This didn't happen all the time and some days were better than others, although it was progressively getting worse.
In total, this went on for about 4 months. My husband only decided to seek treatment, when one day, he couldn't swallow water. By this time, he had also lost weight due to the problems with swallowing.
He also had problems sitting for too long because he was having pain in his back.
Diagnosing Cancer of the Esophagus
We went to our local 24-hour hospital and the doctor told us he would need an endoscopy as a matter of urgency. Locally this procedure isn't offered so we took a taxi to the state's capital, about 50 miles away, where he was able to have an endoscopy and they also took a biopsy.
With the images from the endoscopy, we returned to the walk-in clinic. The doctor said, “I'm concerned”, She told him to go home, pack a bag with personal hygiene products, and return in the afternoon. Her plan was to get him into a hospital ASAP.
That wasn't to be. He arrived home in a taxi the following day. The doctor had arranged an appointment with the digestive surgeon.
Ian was able to eat some food, and drink some liquid. The doctor had said not to have products that would cause phlegm. It was as though a large lump of mucus was sitting in the esophagus not letting anything pass. Often when he'd bring food up, it would be encased in a thick wad of mucus. Once the majority of that was cleared, he could get some food in.
The lack of food and growing cancer caused an awful taste in his mouth. It was foul smelling and made anything he tried to eat, taste bad. When it wasn't a thick phlegm it was a nasty tasting froth and foam. Where ever 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 to put a little soap powder or bleach in it, but he found the smell made him nauseous.
Esophagus Cancer Treatments
Before he saw the consultant, my husband Ian, had to have a cat scan, another endoscopy and blood tests.
Based on those results, the consultant surgeon told him he had cancer of the esophagus and said, the treatment had to start very soon. He said without the surgery, Ian didn't have 6 months to live. The doctor also told him he was in good health for someone his age, he was 67 at the time.
We live in Brazil and the course of treatment for esophagus cancer begins with radiation and chemotherapy to shrink the tumor and then this is followed by surgery.
If you don't think your life can be put on hold, it can. Everything began revolving around those appointments.
Esophagus Cancer Survival Rate
During the second week of October, we had an appointment with the radiation consultant. He said there was an 80% success rate. Our hopes were lifted because we had read on the British National Health Service website, the odds were nearer 12% survival rate after 5 years. When the radiation specialist looked at the results of the latest endoscopy, he said, it appeared not to have spread. The survival rate depends on the age and general health of the patient. Ian although 67, had been physically active.
The clinic also was not nearby we had to take a taxi every day for 5 weeks. The traveling, which was about an hour each way, was tiring for Ian.
Although the time it takes for a session of radiation therapy is very short (about 10 minutes), there was waiting time depending on when you arrived and how far your name was down the list. 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 he didn't want this. In the end, he had to have a feeding tube inserted as the cancerous growth, and the mucus caused by it, were preventing him from eating enough to sustain him. To be clear, he had to be robust enough not just to survive the surgery but also the chemotherapy that needed to precede it.
Nasal Feeding Tube
The insertion of the feeding tube wasn't straight forward because the opening had become so narrow. The first attempt wasn't successful so the procedure had to be done using an x-ray. For this, Ian was put to sleep.
This was the longest and most traumatic day we had. We left our house early in the morning when it was still dark, and arrived back about 8 pm.
I had never seen anyone malnourished before but this was playing a major role in his declining health. 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. He told us to only use what was on his prescription. Within 3 days, the difference in Ian's health improved. He went from being a zombie back to his old self. By this time his weight had fallen to 58kg (128lbs).
Food for Nasal Tube Feeding
The nasogastric tube (NG tube) that was inserted was narrow, a size 3. This is the size normally used for a toddler. If the tube were to be blocked, it would cause a big problem so everything needed to be kept hygienic. The syringes were put in filtered boiled water with a small amount of bleach. Every time before the liquid food was administered, I had to clean the tube with 20 ml of bottled water. Also after the feeding session, another 20 ml of bottled water.
The food the nutritionist told us to get was called Iso Source from Nestle (pictured above). This was the only nourishment Ian had for nearly 3 months. He was suppose to take 300 ml of Iso Source, 6 times a day. This equated to every 3 hours. The liquid had to be taken out of the refrigerator 30 minutes before to warm up slightly. This was injected slowly into the nasal feeding tube.
By this time Ian was in bed unless we were in the taxi going to the doctors.
Nestle Iso Source
This is the same product my husband used for three months. He was undergoing radiation and chemotherapy at the time before his surgery. This was his only nourishment during that time before he had his esophagus removed due to cancer.
We still have cases left and the surgeon told us to continue drinking it as a supplement because it was high in calories and nourishment.
Radiation and Chemotherapy for Esophageal Cancer
His chemotherapy began in his 3rd week of radiation therapy. On Mondays, he would have chemotherapy in the morning and radiation in the afternoon. The first session of chemotherapy didn't hit him until two days later when he was nauseous and stayed in bed. The doctor gave him prescriptions for medications for nausea, vomiting, constipation, and diarrhea. Ian refused the nausea medication saying he didn't need it. A couple of days later, he needed it but he said it gave him diarrhea.
When the following Monday arrived it was time for the second chemotherapy and radiation session and Ian didn't want to go but did in the end. During every taxi ride, Ian tried to sleep. He had a small pillow behind his head and a washcloth and a bag for the spitting up mucus. After we returned home, he said, he wouldn't be going back for any more treatments. He felt so ill from them.
Time Frame for Surgery
I was in contact with the doctors and told them of his decision. That was the middle of November. For the next month, he barely left the bedroom, urinating in a bucket at his bedside. He was only sitting up when it was time to have the liquid put in his feeding tube.
We had an appointment with the consultant surgeon in the middle of December and he told Ian he could try eating, but the feeding tube should stay in until after the surgery. He also said it's important that the surgery should be completed within two months of 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.
The doctor told us to get a pre and postoperative drink made by Nestle called Impact. It helps to strengthen the immune system and would increase the likelihood of his survival and recovery. He suggested taking 3 cartons a day, two weeks before and two weeks post surgery. This was not within our budget but we bought 52 cartons which would equate to 2 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.
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.
Nestle Impact Recovery
My husband's chief surgeon suggested we purchase this to have for two weeks before and two weeks post surgery. He said the benefits are remarkable, and the results were documented in The Lancet Medical Journal. It would help to build his immunity to fight off potential infection and aid in his recovery
We purchased small cartons and the consultant surgeon suggested drinking 3 per day.
Our next appointment was in the middle of January to confirm the surgery and speak to one of the surgeons. There would be three surgeons who would be operating. Ian was scheduled for the 21st of January for his surgery. 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 ICU I then stayed.
The esophagus was removed and the stomach stretched up and stitched near the base of the neck, where now there is a 4” 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.
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. There was a lot of fluid that needed to be expelled to reduce the chance of pneumonia. Lack of sleep and the pain, made the exercising difficult. It was a catch 22 because he would heal faster if he'd move 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 were leaving the hospital. In total, Ian was in the hospital for 12 days.
Causes of Esophagus Cancer
Although medical sites vary slightly, the causes of cancer of the esophagus:
According to the NHS are as follows:
- Persistent gastroesophageal relux disease shortened to GERD (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. ¹
Although the doctors and nurses are treating the patient, it will be left to the carer 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 carer.
¹nhs.uk. (2019). Oesophageal cancer. [online] Available at: https://www.nhs.uk/conditions/oesophageal-cancer/ [Accessed 23 Mar. 2019].
© 2019 Mary Wickison