Should I have a PEG feed for throat cancer?

If you’re reading this, there’s a chance that either you or someone you care for has cancer and has been told they may need to have a peg feed for throat cancer recovery. First of all, sorry to learn that. It’s a scary time for you. I know from experience what you are going through.

When my dad was diagnosed with throat cancer in 2016, he was told that he would need to keep his weight stable for the radiotherapy to be directed at the correct place in his neck. He was also told that if he was unable to eat or maintain his weight, it may be necessary for him to have an NG tube (nasogastric tube) inserted via his nose to his stomach to feed him.

At the time (prior to surgery), he was also offered a PEG feed (percutaneous endoscopic gastrostomy) which could feed him via a tube into his stomach. The PEG feed sounded extreme to him and use, and it wasn’t something he wanted. PEG feeding also carries a risk of infection.

However, by the time his radiotherapy was over he was in a bad way, and was admitted to hospital. Unfortunately for him, he was one of the 10% who was left unable to swallow even water due to the inflammation, and he was unable to tolerate an NG tube down his throat. It was at this point that he sad he would have opted for the PEG feed in hindsight.

Lack of information

The problem with making the decision over the PEG feed was a lack of information. No one is to blame for this. It’s just a case of their being a lack of experience with cancer survival of this type. To be blunt, 15 years ago he probably wouldn’t have got even as far as radiotherapy: the tumour in his neck would have killed him. Today, he has a 75% chance of complete remission of the cancer. But that means that there is still an unclear understanding of how people recovery from throat cancer and different people react in different ways to radiotherapy. It’s still early days in terms of cancer recovery.

So, Should I have a peg feed for throat cancer recovery?

It’s a hard one to answer, every case is different, but my dad says he wishes he had opted for the PEG feed. He said that the pain of them attempting to install the NG tube was excruciating (they tried multiple times over many days, and on two occasions he turned purple).

For cancer recovery you need good nutrition. You need protein. If you can’t swallow, and IV saline drip isn’t going to be enough to help your body repair it’s cells. If your throat is inflamed form the radiotherapy (which it probably will be) you’re not going to want them to force a tube down it.

My dad sad that i hindsight, he wishes he’d opted for the peg feed from the outset.

You dip around 7 to 14 days after the radiotherapy

Radiotherapy is arguably less stressful to the body than chemotherapy, but it’s not without side effects. Most patients of radiotherapy notice a slow decrease in their strength over the first couple of weeks. However, you’re much likely to feel at your worst between 7 to 14 days after the radiotherapy finishes.

So, when considering a PEG feed, try to remember that two weeks after your treatment you are going to feel at your weakest. Consider whether you are going to be strong enough to drink and eat, and whether you want the distress of having feeding tube inserted at that time.

Radiotherapy for throat cancer – Week 3

This weekend my dad came round for dinner.

Now into week three of the radiotherapy for throat cancer, the side effects of the treatment are beginning to show, but he’s still generally well and able to go about his daily life as normal, despite feeling tired most of the time.

 

Thick saliva and mucus

So far, his biggest issue is that the saliva and mucus in his throat has become noticeable thicker, so he’s constantly sipping fresh water to help. He’s also carrying out the physiotherapy given to him to keep his throat muscles strong.

 

Lack of sense of taste

Another side effect of the radiotherapy for throat cancer that he is experiencing is a loss of taste. In fact, he says there are some foods he can’t taste at all. However, he’s been told this will eventually return once the radiotherapy is completed and he has recovered.

 

Swelling in the cheeks

I noticed dad has a swelling in his upper neck towards his cheeks, which we’re calling is “hamster face”. There is also some slight brusing directly to the area where the treatment is being provided.

 

Overall, progress so far is very positive

Despite the side effects dad’s experiencing so far, it’s all very positive. They are annoying, and he’s tired, but these things are to be expected. However, he’s maintaining his weight and still able to do some activities.

Radiotherapy: the first day

So today my dad had his first dose of radiotherapy for his throat cancer. It’s the first of 30 sessions.

He said he didn’t feel anything. He simply lay on the bed of the linear accelerator (that’s the name of the machine which delivers the strong dose of radiation). He said the most difficult part was laying down for 15 minutes without falling asleep.

He arrived at the hospital for 9am and was home by midday…

Radiotherapy for throat cancer

As my dad progressed in his treatment, it became closed to the day when he would start 3 months of radiotherapy for throat cancer.

When we initially found out he would need radiotherapy, I immediately turned to the internet to find out more about it (I knew nothing previously). The first video I watched was one by McMillan which explained how the treatment was administered.

Since then, dad has been to the local cancer department of our local hospital and been ‘measured up’ for the machine and also been through a dry run.

 

Making the Radiotherapy mask

First of all, he was fitted for a mask. This involved making a plaster cast of his upper body, neck and head. He was placed onto a bed and strips of plaster were slowly added to his upper body until a cast was made. This was then removed from him and left to dry.

Over the next few days, the cast was transferred onto a plastic mould. This will eventually be used to clamp him onto the radiotherapy table to ensure he is kept as still as possible during the 20 minute bursts of treatment.

He’s described the mask as being “a little uncomfortable”.

 

Tattoo markings

To ensure that the radiotherapy machine can be aligned exactly the same place every day, his has been marked with some tattoos. This is important during radiotherapy for throat cancer as it ensures that the dosage is directed at the right place every time.

Read next: My dad has throat cancer

Throat Cancer – a blog of my dad’s fight of the Big C

In September 2016, my mum came to my work to give me and my sister the devastating news: your dad has throat cancer and he has to have major surgery to remove the tumour. Prognoses at this point was unknown, but there was talk of possible nerve damage and even removal of his voicebox. She was in tears and I felt numb. They say that people don’t hear anything after being told they have cancer and I don’t really recall anything for the minutes afterwards. It was just utter shock that a healthy man in his very early 50’s could suddenly be so ill.

 

How the throat cancer began

Just over a year ago my dad had developed a lump on the left side of his neck. It would later transpire that this once benign lump had developed into throat cancer. One of the first questions people as is “was he a smoker”. He was in his 30’s but quit 20 years before his diagnoses. What we would later be told by the specialist was that the main causes of throat cancer are smoking, drinking neat spirits and the HPV virus. In his case it was smoking.

The cancer was secondary and various scans including a P.E.T. (positron emission tomography) scan would need to be carried out to try and identify the primary cancer.

Dad was actually very pragmatic about it all when he found out, but mum wasn’t. The day after the diagnoses she sent me a message.

“My heart is breaking” she said. “I’m trying to hard in front of him but the minute he is out of sight I just break down with grief” followed next.

It was a difficult message to receive. You always look to your parents for support, so when they’re suddenly relying on you to say the right thing, it’s a strange experience. I tried to be positive and remind her that his is still young and that we must be positive or negativity will get us all, including him. If you’ve ever seen the scene in ‘The Neverending Story’ where Artax this horse dies in the Swamp of Sadness, you’ll know how this feels: trying to be positive whilst swimming around is a thick sea of negativity. If you’re not careful it’ll swallow you and everyone around you up.

 

The surgery to remove the tumour

post-throat-cancer-scarWithin weeks, the oncologist had my dad in the operating theatre and was removing the lump from his neck. The surgery involved opening the side of his next from below his ear, down the side of his neck, and across the front of his throat. It took about 3 hours. They removed a lump the size of an egg, his tonsils and a lymph gland. He was stapled back together with 37 staples and a drain was fitted. This was on a Tuesday and by Saturday he was back home. The care he received at Broomfield hospital was exemplary.

 

Recovering from the initial surgery

Unfortunately, after a week he was still in a lot of pain, mainly from where the tonsillectomy had taken place, and within 14 days he was back in hospital. He had developed and infection and needed another general anaesthetic to investigate the cause of the problem. Thankfully this was treated with a big dose of antibiotics and he was back home again less than 24 hours later.

As the next couple of weeks went on his scar from the surgery healed very well, and he looked better despite having lost quite a bit of weight. However, he still got tired very easily. It was clear to see he was losing weight.

 

Telling the children that Grandad had cancer

We’d told the kids that Grandad had a lump in his neck that needed to be removed, but we hadn’t told them why. My son and daughter – 11 and 9 respectively – aren’t stupid. They were soon going to realise that something wasn’t right once the radiotherapy commenced, especially if he had to have a feeding tube up his nose. They have a close relationship and spend a lot of time with him and now we had a complete diagnoses it was time to tell them the truth. Between us we made the decision to tell the children that Grandad had throat cancer.

We decided it was important to be as truthful as we could. Important so that there could never be any accusation that we’d hid anything from them. I sat them down with my wife and gave them the news as gently but as factually as possible. My son, the eldest, initially took the news badly but we were able to quickly explain to him the prognoses and that things appeared to be possible.

Most importantly we encouraged them to ask questions, not just to us but also to my dad. We needed the children to understand that they could speak to anyone they want to and ask questions to whoever they like. I think it reassured them.

It was now time for the next treatment – Radiotherapy

The biopsy confirmed that there was cancer in the lump and gland removed. Unfortunately, the source of the primary cancer still couldn’t be identified. It was therefore recommended that dad was given radiotherapy for throat cancer to his neck to eliminate the risk of the throat cancer coming back.

Dad might have to have a feeding tube inserted into his stomach or via his nose, and could either inject food into the tube himself or wear a backpack to control the feeding for him. He’s also need to have a special mask made of his fact to protect it during the radiotherapy treatment. It’s important he doesn’t lose weight during the radiotherapy as this can have a negative affect on how the treatment is delivered.

It’s clear that he and us are very early in this horrible nightmare and perhaps the worst it to come. I don’t know what the future holds, but I’m going to try and update as much as possible.

 

Keeping positive is going to be vital

One thing I do know is that being negative isn’t going to help anyone. It won’t help keep my dad encouraged, it won’t help the family. No, more than ever, it’s time for everyone to rally around and be there to help in whatever little way necessary.