In 2018, my husband was diagnosed with esophageal cancer. Through my articles, I share information about the treatment he received.
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 the aim of 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 immediately if you are 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, a 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 worsened.
In addition, because of a 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.
Read More From Patientslounge
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 from 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 were 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 supposed 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 chemotherapy session didn't hit him until two days later when he became very nauseous and stayed in bed.
The doctor prescribed medications to help with 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 strengthen the immune system and 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.
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
Mary Wickison (author) from USA on June 17, 2020:
A friend had mentioned the use of hemp oil, but I don't believe it is readily available here. From what I've read, regarding it here in Brazil, it is only poor quality and expensive. There is a push here to allow farmers to grow it for medicinal purposes. However, this is very recent and the market hasn't caught up.
We are managing the pain with tramadol drops and paracetamol and will move to morphine as the pain worsens.
Massaging his back lightly also helps with the pain. Also to minimize bedsores he is trying to alternate how he lays.
I mentioned the need for oral care and he is brushing his teeth more frequently. However he is getting a build up of what I believe are tonsil stones (although he has no tonsils) on the feeding tube and in his throat. This is only an annoyance for him, in the whole scheme of things though. I have read about gargling with salt water but he is worried about choking. I suggested a salt water rinse for the mouth but he is rather dismissive of this as an idea.
We are falling into a routine that seems to be working at the moment. I know things will progressively worsen but feel able to cope with it.
Thanks for your help.
Cecilia Santiago on June 11, 2020:
Sorry for my late reply. Hope the last 2 weeks have given you more positives than otherwise.
Wondering if you have had a chance to speak to your local doctor about the benefits of hemp oil for managing pain? I have only had the experience of using it with our dog who suffered a nasty spinal injury and it allowed him some sleep and comfort. Please ignore this if this suggestion is not appropriate.
So sorry to hear that the palliative team are so far. Purely from a swallowing and voice perspective, I can only imagine the struggles your husband may be going through. If you haven't already, maintaining good oral hygiene is vital in ensuring an onset of a chest infection is kept at bay as best as possible. The other issue you may be dealing with is an extremely dry mouth which can be very off-putting resulting in a bad overall feeling (on your husband's part).
I don't particularly want to be making suggestions or giving advise when it is not required. Just know that I would be happy to communicate with you for any help related to what I practise (at no cost) if you so needed it. I would always advise you run whatever suggestions received past your local doctor managing your husband's care.
Keep well and best wishes.
Mary Wickison (author) from USA on May 31, 2020:
We have been unable to go to the palliative care department which is about 70km away. The coronavirus has thrown many departments into chaos. We do have a health visitor who has brought me feeding bottles, syringes, and a wheel chair. Also the local doctors are sympathetic and will give me prescriptions without Ian needing to be present.
The pain medication may prove problematic as just last week I had to go to 5 pharmacies before I could have a prescription filled. Because of the difficulty in swallowing we are using drops that I insert into the feeding tube. The doctor checked and not many companies make their pain medication in liquid. Because the benefit of pain medications is reduced the longer the patient needs it, I don't want to begin with morphine until the pain is much worse.
What I didn't mention in this article, was four months after the initial surgery he had a diaphragmatic hernia and had emergency surgery. Following that surgery, he was unable to stand up straight as some vertebrae had collapsed. Sitting in a chair for any length of time became painful. One of his vocal chords became paralyzed towards the end of last year, and he can only speak in a whisper.
Even if the cancer hadn't spread, the quality of life would have been poor.
Thank you for your kind words.
Cecilia Santiago on May 30, 2020:
Thank you so much for penning all this down despite the journey you have been travelling over the past 18 months or more. I stumbled upon your article about making neem leaf tea as a pesticide and fell in love with how you write. I then started looking up other articles you have written.
I was very sad to read this article of yours. I am a speech-language and swallowing therapist. Although we are not often referred patients with esophageal cancer, we sometimes are the ones who make the referral to the gastroenterologist as the signs and symptoms are different to that of someone with pharyngeal cancer or swallowing difficulties originating in the pharyx. Your article shed light on the early signs and symptoms and as such will definitely help others concerned by the same.
Judging from your sequence of postings, Ian and you may still be receiving palliative care. I hope and pray this part of your journey is well supported. I will keep you both in prayer. Blessings to you and Ian.
Warm wishes, Cecilia.
Mary Wickison (author) from USA on March 27, 2020:
Sadly he isn't going to recover. An inoperable cancer has reappeared.
He was told he has 6 months to live if he doesn't have chemotherapy or maybe a year if he opts to undergo the treatment. He has declined the treatment.
It is now about pain management and palliative care.
Thank you for your kind words.
Rajan Singh Jolly on March 27, 2020:
I hope your husband is getting healthier by the day after all the ordeal. A wonderful life partner can certainly make it a bit easier going through all this. My prayers for your husband's complete recovery soon and best wishes.
Carol Morris on October 12, 2019:
I wish your husband a speedy recovery.
Yes, the artical was very helpful. My mother has cancer and is undergoing chemo, so this was very informative and helpful. Thanks and stay strong.
Mary Wickison (author) from USA on October 12, 2019:
There were further complications since writing the article. Four months after the surgery he had a hernia. This is one of the potential problems that could occur. He had to have emergency surgery and was in the hospital for another 2 weeks.
Recovery is a long slow process with regular checkups.
I hope the article was useful for you.
Carol Morris on October 12, 2019:
Thanks for writing this hub. I hope your husband is doing well.
Mary Wickison (author) from USA on June 11, 2019:
Thank you for your prayers and kind words Linda.
Ian has had a complication, four months after the operation.
The intestines began to twist and push upwards into the diaphragm. This created liquid in the body cavity. I came home from shopping and found him unable to stand or move without pain. He was sweating profusely. We spent the night in the local emergency care hospital and the following day he was admitted to the University Hospital where the original surgery took place.
This is not uncommon, the surgeon told me. This time it wasn't keyhole surgery but a long incision below the sternum past the navel.
Recovery will take some time.
Linda yes I do go out to the shops, and am outside most of the day. Being cooped up in the hospital for 2 weeks nearly drove us both crazy!
It's all about priorities. Some tasks that seemed important, can wait.
Linda Lum from Washington State, USA on June 10, 2019:
Mary, I thought I was "following" you on HP, but discovered just today that I was not. Therefore I had not read this story until now. I knew of Ian's diagnosis but did not have all of the details. The two of you have been through such an ordeal. I am glad that you both have a team that you feel confident in and that you have a support system.
I will continue to pray for you both. And Mary, I hope that you will be sure to take care of yourself as well. Ian needs you, but you can't be your best for him if you are exhausted or ill. Are you able to get away for a few hours? A time to go shopping, take a walk, or even a quiet time for meditation can do wonders for your spirit.
Thank you for sharing your journey. I'm certain this will be of help to many other people. And, I'm also glad that you allowed us to know--there are many people here on HP who care about you. I do.
Mary Wickison (author) from USA on May 30, 2019:
Thank you Kimberly, it's much appreciated. I hoped the article would shed some light on what it's like to go through it.
Kimberly Lake from California on May 30, 2019:
Thank you for sharing your experience. I am sure it will help someone who is going through a similar experience. I will send prayers and good thoughts to you and your husband.
Mary Wickison (author) from USA on May 22, 2019:
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.
Rochelle Ann De Zoysa from Moratuwa, Sri Lanka on May 22, 2019:
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!
Miebakagh Fiberesima from Port Harcourt, Rivers State, NIGERIA. on April 08, 2019:
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.
Miebakagh Fiberesima from Port Harcourt, Rivers State, NIGERIA. on April 08, 2019:
Hi, I am noting. please. And, thank you.
Mary Wickison (author) from USA on April 08, 2019:
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.
Dianna Mendez on April 08, 2019:
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.
Mary Wickison (author) from USA on April 02, 2019:
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.
Shauna L Bowling from Central Florida on April 02, 2019:
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?
Miebakagh Fiberesima from Port Harcourt, Rivers State, NIGERIA. on March 26, 2019:
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.
Mary Wickison (author) from USA on March 26, 2019:
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.
Miebakagh Fiberesima from Port Harcourt, Rivers State, NIGERIA. on March 25, 2019:
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.
Mary Wickison (author) from USA on March 25, 2019:
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.