My Husband's Experience With Esophageal Cancer and Esophagectomy

Updated on May 7, 2019
Blond Logic profile image

In 2018, my husband was diagnosed with esophageal cancer. Through my articles, I share information about the treatment he received.

Surgery for Esophageal Cancer
Surgery for Esophageal Cancer | Source

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 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 couldn't 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)
  • Smoking
  • 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 he 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 up 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 a 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.

CT Scan
CT Scan | Source

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, is physically active.

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

Isosource 1.5 Cal Unflavored/375/250 ml/Case of 24
Isosource 1.5 Cal Unflavored/375/250 ml/Case of 24

This is the same product my husband used for three months while he was undergoing radiation and chemotherapy. This was his only nourishment during that time. Even after the treatment sessions, the surgeon told us to continue drinking it as a supplement because it was high in calories and key nutrients.

 

Chemotherapy

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 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.

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

Impact Adv Recvry Van 6Oz (Sold by The Case 15/CS COMBIBLOC)
Impact Adv Recvry Van 6Oz (Sold by The Case 15/CS COMBIBLOC)

The chief surgeon suggested my husband drink this nutritional boost three times a day for two weeks before surgery and two weeks after. He the benefits are remarkable, and the results were documented in The Lancet Medical Journal. It's supposed to help boost his immunity to fight off potential infections and aid in his overall recovery.

 
Click thumbnail to view full-size

Esophagectomy

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.

Post surgery at home
Post surgery at home | Source

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.

Iso Source and Impact by Nestle
Iso Source and Impact by Nestle | Source

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.

Questions & Answers

    © 2019 Mary Wickison

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      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        24 hours ago from Brazil

        Hi Rochelle,

        I am sorry to hear about your father and glad your aunt's recovering. Cancer makes life stop its normal routine.

        My husband is still recovering but doing more outside. His weight is increasing slowly. Food does not taste the same to him but apparently this is a common side effect.

        Thank you for reading and your comment.

      • rdsparrowriter profile image

        Rochelle Ann De Zoysa 

        25 hours ago from Moratuwa, Sri Lanka

        Hi Mary, I hope and pray that your husband get well soon.. I can understand how it might be affecting the whole family.. I have an aunt who is recovering from cancer and my dad died of lung cancer. Thankfully my dad didn't suffer that long, otherwise for him it would have been a nightmare as he was very active. We diagnosed that he has cancer a week before he passed away. It was very sad to see him bedridden, although I was sad to see him suffer in pain, I thanked God for taking him to His side and relieving him from pain. I hope that your hubby would get healed. Take care and may God bless you both!

      • Miebakagh57 profile image

        Miebakagh Fiberesima 

        6 weeks ago from Port Harcourt, Rivers State, NIGERIA.

        Hi, Mary, before something serious happen, people should be in contact with their doctors. Just by paying the doctor a short visiting, I think you've got to jaw-jaw for a short while. He or she can tell you what to do or not do as regards your health. I hope I make it clear here. Many thanks.

      • Miebakagh57 profile image

        Miebakagh Fiberesima 

        6 weeks ago from Port Harcourt, Rivers State, NIGERIA.

        Hi, I am noting. please. And, thank you.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        6 weeks ago from Brazil

        Hi Dianna,

        His recovery is taking longer than we thought. I think part of it is his age, he's 68. Plus because he was so active before, he gets agitated that he can't get up do what he wants.

        I hope if people feel their is something wrong, they'll seek medical advice quickly.

        Thank you for your good wishes.

      • teaches12345 profile image

        Dianna Mendez 

        6 weeks ago

        Mary, I admire you and your husband for being such strong warriors through his experience. Your sharing will encourage those who are going through or may in the future have to deal with this cancer. So good to see how he has recovered and continuing to gain strength. Sending you hugs and prayers.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        7 weeks ago from Brazil

        Hi Shauna,

        As one of the local doctors explained it, although the cancer may be in one area, it can cause pain in another place. One night Ian was experiencing chest pains so we rushed back to the local hospital. They hooked him up to the heart monitor just to check everything was okay with his heart, it was. This was before we knew exactly what it was.

        I think not knowing is the worst part. Once we had a diagnosis, and a treatment plan in place you just have to trust in the process.

        The cancer was quite low down in the esophagus towards the stomach. In fact a portion of the stomach was removed. Then the remaining stomach was stretched up to fill the gap.

        The doctor said it could take 2 years to heal completely. Ian still has to rest but today was out on the farm with the brush cutter for a short time.

      • bravewarrior profile image

        Shauna L Bowling 

        7 weeks ago from Central Florida

        Mary, I'm so sorry to hear this. The two of you have been through a lot. How is Ian doing now? Is he eating and resting?

        I'm curious about the back pain he felt before he was actually diagnosed. How does esophagus cancer affect the back?

      • Miebakagh57 profile image

        Miebakagh Fiberesima 

        8 weeks ago from Port Harcourt, Rivers State, NIGERIA.

        Hi, Mary, "stubborn" "nagging", I giggle. What a nice couple you both are! The good news that his up and running is great. He has now learned a life lesson. Good for him as a human being. Have a great time on your farms.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        Hi Miebakagh,

        I agree with you he should have gone to see the doctor sooner. He calls himself independent, I call him stubborn! My suggestions (he would call it nagging) to go to the doctor were ignored.

        Daily working here on our farm has kept him physically fit and that helped him initially. However, his reluctance to have a feeding tube sooner meant he lost a lot of weight and became weaker.

        Eating fruits and vegetables are so important and we live in an area that is abundant, especially in fruits.

        This disease has forced him to make lifestyle changes.

      • Miebakagh57 profile image

        Miebakagh Fiberesima 

        8 weeks ago from Port Harcourt, Rivers State, NIGERIA.

        Hi, Mary, if I realized that a health issue is complex at first, I straight way went to see my doctor. This will avoid complications later. I think your husband was a little late. But I am glad that at 65 years he was still and very physically active. This is his saving grace.

        Eating fruits and vegetables every day I think guarantee that we stay in optimum health. This significantly control the the body mass index. I am glad that your husband came out of the surgery and healthy. Thanks for sharing.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        Hi Dora,

        I think the earlier the better. In my opinion, men especially tend not to go soon enough. I honestly believe if my husband had seen a doctor sooner, he would have had a speedier recovery.

        I don't think we could have had a more caring team of doctors and nurses.

        Thank you for your kind words.

      • MsDora profile image

        Dora Weithers 

        8 weeks ago from The Caribbean

        Thank you for sharing this experience. You show us the importance on consulting the doctor when one is not sure what's happening. Happy that the process went well for you. Best to your husband and also to you, going forward.

      • pstraubie48 profile image

        Patricia Scott 

        8 weeks ago from sunny Florida

        You are welcome

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        Hi Patricia,

        Some days are good and I think we've put the worse behind us. Then other days, he is fatigued and needs to lay down several times during the day.

        We've read this is normal but adjusting to life without an esophagus is taking its toll.

        Thank you for sending those angels our way.

      • pstraubie48 profile image

        Patricia Scott 

        8 weeks ago from sunny Florida

        Hoping he is doing much better. Cancer takes families on a journey no one would willingly take. The more we know and understand the better able to deal with it we can be. Angels are headed to you and your husband.ps

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        I think the biggest fear for people is not knowing what's going to happen. I wouldn't wish this on anyone but hope that anyone about to go through it will gain a little understanding from our experiences.

        There are so many different doctors involved it can be overwhelming. The loss of control over what is happening is hard for people of a certain age but you've got to have faith that what they are doing is for the best.

        Thanks for your comment, and your prayer.

      • RTalloni profile image

        RTalloni 

        8 weeks ago from the short journey

        You've done such a good job in sharing this formidable situation in an article. Thank you for working to give others a real look at the difficulties of this disease's effects and of how perseverance helped you both go through the stages you've faced with this disease. Before posting this comment I am going to take time to pray for you both.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        Bill I don't know anyone whose life hasn't been affected by cancer either within their family or circle of friends.

        I agree with you, I hate it. It seems to rip the rug out from under your feet and you don't know how everything will land.

        I am looking for the lesson in this experience. It sums up as, 'don't sweat the small stuff'.

      • billybuc profile image

        Bill Holland 

        8 weeks ago from Olympia, WA

        Dammit, Mary! I hate cancer....hate it! I'm so sorry you are your husband are going through this....thank you for sharing your story,and may peace be your constant companion.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        Hi Flourish,

        I think this episode has really made me realize I need to return to the UK. Negotiating bureaucracy and the medical system in a language that isn't your native tongue is difficult. Sometimes it takes a sharp jolt like this to make people take action.

        The Brazilians are so kind and go out of their way to help. Everyone from the taxi driver who reduced his rates for us to our neighbors who looked after our house and animals during the time we had to stay at the hospital. It made me realize we didn't just move into a house, we moved into a community.

        I am hoping this year will be a positive one.

        Thanks for your comment and good wishes.

      • FlourishAnyway profile image

        FlourishAnyway 

        8 weeks ago from USA

        I’m so sorry to hear about the diagnosis and struggles you and your husband have had to endure. It’s bad enough to have cancer but the thought of making that journey to get treatment is terrible. I certainly hope he continues to do well, and I hope you take care of yourself. It cannot be easy being a person’s sole caregiver in isolated circumstances.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        8 weeks ago from Brazil

        Hi Pamela,

        We are taking it one day at a time. He is slowly adding more food to his plate daily, and is able to do short bursts of activity here on our farm.

        It has been a dark time but hopefully we are over the worse.

        Esophageal cancer has touched many families, thanks for thinking of us.

      • Pamela99 profile image

        Pamela Oglesby 

        8 weeks ago from Sunny Florida

        Mary, I am so sorry to hear what you and your husband have been through with this awful cancer. My huband's brother has gone through much of the same thing. I hope things have improved recently and in the future also. God bless you both.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        2 months ago from Brazil

        Hi Glenis,

        From what I've read, it isn't that common for women to get it. I'm glad you had those extra years with her.

        The surgeons here seem young, some are in their late 20's and early 30's. They say the training here is intensive and part of their studies are done in London hospitals. Ian was treated in the Brazilian National Health Service and we were impressed by the level of care he received.

        Thank you for your comment and support.

      • profile image

        Glenis Rix 

        2 months ago

        Mary, my heart goes out to you both. My mother had inoperable cancer of the oesophegous and eventually had two stents inserted. She survived for several years. I wish you both well.

      • Blond Logic profile imageAUTHOR

        Mary Wickison 

        2 months ago from Brazil

        Hi Sally,

        We have another follow up appointment next week with the doctor. We will also receive the results of the biopsy that was taken from the lymph nodes during the surgery. It's difficult to make plans both long or short term, when you just don't know what the future holds.

        My uncle had gone through this some years ago, although for his, they opened the chest cavity. The type my husband had is less invasive. My cousin was very supportive having been through it with her father.

        Thank you for your kind words.

      • sallybea profile image

        Sally Gulbrandsen 

        2 months ago from Norfolk

        Having witnessed a relative of mine go through esophageal cancer I feel for you and yours Mary. I hope that things have improved for both of you.

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