Head and neck cancer stories: Food for tube feeding thought

Hand holding a red and white ribbon to symbolize head and neck cancer awareness. The words "Head and neck cancer awareness: food for (tube feeding) thought

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If you or a loved one has been diagnosed with head and neck cancer, you may be scouring the internet for head and neck cancer stories – something to ease your anxiety, set your mind at ease, and let you in on what to expect.

You may have been told that somewhere along your cancer journey you might need a feeding tube and you’re already wondering, can I use food for tube feeding?

You aren’t alone. As you will read further down, other people with head and neck cancer think those exact thoughts and do what you are doing now, searching for support.

As a tube feeding dietitian, and advocate of blended tube feeding, I’m here to guide you along your tube feeding journey. 

Particularly, I will share how food for tube feeding has impacted patients along their journies through treatment and survivorship with head and neck cancer. 

In my experience, people find comfort in hearing from others who have been where they are. If that’s you, hang around.

Head and neck cancer awareness

Spreading awareness for head and neck cancer not only educates and informs, but also helps to support those living with head and neck cancer. 

Head and neck cancer is not just one type of cancer but a group of several cancers.

Head and neck cancers refer to cancers that begin inside the mouth, the nose, and the throat. They usually start in the squamous cells lining these surfaces’ mucosal layers (1, 2).

Anatomy of the nose, mouth and throat
Anatomy of the mouth and tongue medical vector illustration on white background eps 10

Even though you may feel isolated, you are not alone. About 4% of all cancers are head and neck cancers, accounting for the sixth most cancers worldwide (2, 3, 4).

Outside of discussion forums or social media, there are many formal organizations where you can find reliable information about your cancer to help you figure out what to expect and guide questions for your healthcare team. 

If you want more information on specific head and neck cancers and treatments, you can visit one of these websites:

As you may expect, due to the location of these cancers, they can have a significant impact on your eating and nutrition. 

Head and neck cancer nutrition

Even before you get a diagnosis, you may have experienced changes in your ability to swallow and chew; therefore, you may start your journey already malnourished (4). 

Being malnourished can make going through treatments (chemotherapy, radiation, combination treatments) and surgery that much more challenging for your body.

And it can be challenging to get what you need when you feel pain or discomfort with eating and swallowing. This can be true throughout your cancer journey. It’s a vicious cycle.

At some point, with head and neck cancer, you may face a time when eating becomes difficult for you and there may be a time during your treatment when you can’t eat anything or aren’t ‘allowed’ to eat

Sometimes, you may have to rely on other ways to get your nutrition and stay strong enough to get through your treatments and recovery (4).

This may mean getting a feeding tube. Your team will consider where your cancer is, and how long they think you’ll need the tube to help guide what type of tube to offer you.

For more information on feeding tube types, formula, and blended food, head to my tube feeding 101 article.

Getting a feeding tube can be a big fear for you. But, it can be a positive thing too.

Tube feeding can be a temporary lifeline to get you to the next stage of your treatment. It can relieve some stress related to trying to get everything in through your mouth when you are having trouble with pain, or learning to swallow again after surgery. 

If you get a feeding tube, you will likely see a dietitian. If you don’t, ask to see one. 

A registered dietitian can guide you through all your nutrition challenges during your head and neck cancer journey.

Experiences from a head and neck cancer dietitian

I’m a head and neck cancer dietitian. I’ve worked for close to 20 years in the head and neck surgery unit in a big city hospital and most of my patients have a feeding tube at some point during their treatment.

I’ve helped hundreds (maybe thousands) of people with their nutrition after surgery to support their recovery and stay strong for their cancer treatments.

I help people:

  • Come up with tube feeding plans to suit their needs and lifestyle
  • Start on their tube feeds
  • Incorporate blended food into their tube feeding plan
  • Troubleshoot feeding issues along the way
  • Learn how to give their tube feeds
  • Set up for tube feeding success at home
  • Get off tube feeds after recovery

…and everything in between

I’ve seen the deep impact that head and neck cancer and tube feeding can make in your life. 

When you can’t eat, and you’ve also been facing a cancer diagnosis and difficult treatments, you’re life is turned upside down.

A vital part of your everyday life – eating (by mouth) has been taken from you. Grieving this loss is normal.

I listen to how you want tube feeding to fit into your life and help you achieve that! 

This could mean adjusting your formula or blended food, tweaking your feeding/eating schedule, helping you get funding for your supplies and equipment, and so much more.

I have seen the benefit that even adding a little bit of food back into your tube can provide and I’m certainly supportive if that’s something you want to try.

You may experience fewer GI troubles (nausea, vomiting, reflux, diarrhea) but you may also feel more in control of your nutrition and have a better quality of life overall (5).

But you don’t just have to take it from me. 

I’m going to share some personal head and neck cancer stories below from patients and their families and their experiences with food for tube feeding. 

Food for tube feeding: real head and neck cancer stories

You may have heard about blending your food for tube feeding and been deterred by thinking it was too much work, or too expensive, or maybe your team told you it couldn’t be done.

It may not be right for everyone, but I hope to share some personal stories to encourage you if you’ve thought about trying a blended diet (but felt too overwhelmed to try).

I’ve seen firsthand how beneficial it can be, not only for nutrition but also for social and cultural reasons as well. 

If you’re interested in more about the benefits and if it’s right for you, check out another of my blog articles here.

I reached out to my community to share their experiences with tube feeds and using blended food for tube feeding during their treatment and recovery for head and neck cancer. 

I’m grateful they felt they could share their stories and I hope you can relate and find inspiration for your journey.

“Tube feeding is not as scary as you think”

Chrissy’s husband was diagnosed with stage 4 nasopharyngeal cancer. He also had paralyzed vocal cords which were contributing to swallowing difficulties and aspiration pneumonia. 

Although she remembers being scared, they felt there “was no choice” but to get a feeding tube. Looking back, she says “If he didn’t have his tube, he would be dead”. 

Once there was a plan, things moved forward quickly –  “He got a port, feeding tube, and first chemo all in 1 week, it was off to the races”.

Chrissy says she knew that with cancer, “diet matters”.  The ingredients on standard tube feeds don’t agree with what she felt he needed for his recovery.

So she looked up options for tube feeding with more food ingredients and what she felt to be better for him, but the options were too expensive. So she bought a blender and made her blended tube feeds from the start.

Their dietitian was supportive but warned – ‘it’s a lot of work’. Chrissy acknowledges that it was lots of learning to get the consistency right and how to unclog the tube but then says “Everything got a lot less scary, had lots of laughs”. 

She started with a simple recipe. She precooked ingredients, like beef, they had raised themselves and made food for 2 days at a time.

She and her husband soon found it fit into their lifestyle – “He got so comfortable ‘tubing’ that he did it in ski resort parking lots, camping, etc”. 

This is a common progression. Like anything new, you feel overwhelmed with getting started. But once you have a manageable place to start, and give it a try, you feel empowered and wish you did it sooner. 

For families that want to explore blending, Chrissy hopes that they know “it is possible” and “it’s not as scary as you think”

Her husband is now cancer-free and thriving, and feels being able to make her husband’s food is part of “his healing success”. 

“You can blend just about anything”

Kim was diagnosed with metastatic squamous cell cancer of the base of her tongue in September 2023.

She was “one to do a lot of research” and said, “A feeding tube was probably going to be in my best interest”, even though she “hated the thought of getting it”.

Unfortunately, Kim says she got “zero instruction” on how to use the tube, which is something I hear way too often. My hope for everyone is to have access to reliable, helpful information to guide their choices.

As far as formula was concerned, Kim decided that conventional formulas were not what she wanted to use. The ingredient list did not align with her food values or what she felt her body needed to get through the difficult treatment she would face.

And besides, she tried a couple of premade formulas that “seemed to have better ingredients” but they all made her “feel nauseous almost right away”.

She turned to the internet and Facebook groups to find out more about blending because while her dietitian wasn’t against it, they didn’t seem to know much about it either.

When faced with making food, Kim was fortunate to have a close friend who offered to make food for her. She was “a Godsend” at the height of treatment when Kim didn’t feel up to making her food.

And if you can manage, Kim suggests cooking and freezing food when you are feeling well so you don’t have to face cooking when you’re not well.

You can blend just about anything” is Kim’s mantra.

As she recovered, she was able to get her feeding tube removed but she still has some swallowing issues and still relies on blended food quite a bit.

You have the power

Head and neck cancer and tube feeding can certainly be overwhelming at first, especially when haven’t gotten the proper information to set you up for success.

You are not alone and there is a supportive community and dietitians like me out here hoping you find us so that you get the information and support you need to thrive on your head and neck cancer journey.

I hope that these head and neck cancer stories gave you some comfort and support in challenging times.

If you are intrigued by the idea of adding food to your tube feeding, but you’re not sure where to start, consider grabbing my free guide to getting started with blended tube feeding (without spending all day in the kitchen).

Your body (and mind) will thank you for adding even a little bit of real food to your tube feeding.

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